tag:blogger.com,1999:blog-46003232934865534392024-03-14T04:46:12.829-04:00PerspicacityRobert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-4600323293486553439.post-74030048742264493842014-09-30T07:27:00.000-04:002014-09-30T07:27:25.342-04:00The next step<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; font-size: large;"><i>Go to the edge of the cliff and jump off. Build your wings
on the way down.</i><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; font-size: large;">--Ray Bradbury<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></o:p></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; font-size: large;">D.A. Freccia: <i>You're a pretty smart fella.</i><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; font-size: large;">Joe Moore: <i>Ah, not that smart.</i><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; font-size: large;">D.A. Freccia: <i>[If] you're not that smart, how'd you figure
it out?</i><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; font-size: large;">Joe Moore: <i>I tried to imagine a fella smarter than myself.
Then I tried to think, "What would he do?"</i><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; font-size: large;">--Gene Hackman, <i>Heist</i> (2001)<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></o:p></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif; font-size: large;"><i>It’s smarter to be lucky than it’s lucky to be smart.</i><o:p></o:p></span></div>
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<!--StartFragment-->
<span style="font-family: Verdana, sans-serif;"><span style="font-size: large;">--Charlemagne “War is a Science” <i>Pippin</i> (1972)</span><!--EndFragment--></span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<br />
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">I don’t think I’m jumping off a cliff – and I know I don’t
have any wings, at least not yet – but I am taking a leap into something new,
different, and exciting, and I want to share the news with all of you today. Beginning
December 3, 2014, I will be leaving my current position in the breast cancer
program at the Kimmel Cancer Center at Johns Hopkins and beginning a new full-time
position as Medical Director of the <a href="http://instituteforquality.org/" target="_blank">Institute for Quality</a> of the American Society of Clinical Oncology (<a href="http://www.asco.org/" target="_blank">ASCO</a>) in
Alexandria, VA. I will help lead and support a number of key programs that make
up ASCO’s quality portfolio, including the Quality Oncology Practice Initiative
(QOPI), the QOPI Certification Program, and the revolutionary and ambitious
<a href="http://www.asco.org/quality-guidelines/cancerlinq" target="_blank">CancerLinQ</a> project, among
other ASCO quality initiatives. The ASCO Board of Directors and CEO Dr. Allen
Lichter recently made the decision to bring on board to the ASCO staff a
physician to provide medical oversight for this key area. I am deeply honored
to be the inaugural person selected for this position.</span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">ASCO’s vision for the future of oncology, well articulated
in the 2012 document “<a href="http://www.asco.org/sites/default/files/shapingfuture-lowres.pdf" target="_blank">Shaping the Future of Oncology: Envisioning Cancer Care in 2030</a>” is
one that really resonates with me. ASCO believes that all patients with cancer
should have access to high quality care and that the information learned from
every patient should accelerate the progress against cancer. ASCO has
identified health information technology, particularly the ability to collect
and analyze vast amounts of big data, as a key driver to achieve this vision. I
couldn’t agree more. For the past 23 years that I have practiced clinical oncology,
patients and families have come to me for my expertise in what is often the
most overwhelming crisis of their lives. They may be full of fear and anxiety,
but they are all hopeful for cure, while expecting compassion
and respect. As a clinician, I know that the only thing that really matters is
the needs of that patient in the exam room across from me, and my primary
responsibility is to help them navigate the shortcomings of our byzantine and
often-insensitive healthcare system, to deliver to them the right diagnosis and
the right treatment, based on the best possible evidence and shaped by their
own preferences and values. To do that, I need access to data, information, and
knowledge of a complexity and quantity that was unthinkable when I graduated
from medical school in the 1980s. To get this access, oncologists need tools
that can’t be discerned in the Google searches and social media streams of
today, as critical as the Internet is to medicine – let alone the medical
libraries and Index Medicus of the last century! ASCO’s rich portfolio of
quality programs, which started with QOPI, an oncologist-led, practice-based quality
assessment and improvement program that launched in 2002, through today’s eQOPI
and the growing library of practice guidelines, to tomorrow’s CancerLinQ rapid
learning system, will continue to be foundational in providing oncologists with
some of these needed resources.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">I’m joining ASCO now as a full time employee because I’m
passionate and optimistic about the future of our field, and I want to devote
the rest of my career to enabling this change. I’ve not been blessed with
unique or extraordinary vision, but I think I can see what it is going to take.
We need to create a world where medical practice consistently reflects unfettered
access to meaningful data; where clinical care and discovery co-exist and
enrich each other; where oncologists discover new knowledge not only from the
3% of patients who bravely enroll on clinical trials but from the routine care
experiences of all; where the documentation of such care experiences is freed
from proprietary electronic systems – currently shoehorned into the rough and
inflexible mandates of the meaningful use requirements (as necessary a first
step as they were) – <span style="mso-spacerun: yes;"> </span>and shared freely
by all; where delivery is not constantly undermined by the specter of the
perverse incentives of quantity-based reimbursement particularly “buy and bill;”
where the amazing advances in panomics are allowed to flourish and inform today’s
care processes and not exist only as vague promises of “precision medicine;”
and where patient-centered care is something we all are proud to deliver, not
just to satisfy next month’s Press-Ganey surveys, but because it represents the
fundamental passion and dedication of our profession as physicians.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">Will I be able to do all of these things as an ASCO Medical
Director? Lordy, I’m going to need a lot of help! I’ve experienced oncology in both
private practice and academics, so I know all too well the challenges of
transformation and how disappointment oft rules. But I think I’m smart enough
to associate myself with some very smart people, and I’ve been lucky enough </span><a href="http://rsm2800.blogspot.com/2012/08/inflection-points.html" style="font-family: Verdana, sans-serif;" target="_blank">in my career</a><span style="font-family: Verdana, sans-serif;"> –
blessed in fact – that I’ve been able to enjoy a wonderful, fulfilling practice
environment and the collegiality and camaraderie of superb colleagues
everywhere I have been. So I think this “leap” – from the familiarity of a
single institution to a visionary, mission-driven organization like ASCO and
this work blending quality, clinical medicine, and information science – is not
just the next step for my professional development but something that feels
positive, natural, and just right. I’ll build the wings later.</span></div>
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<o:p></o:p></div>
Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com1tag:blogger.com,1999:blog-4600323293486553439.post-70873952252708477992014-02-01T23:54:00.003-05:002014-02-06T00:39:17.872-05:00My Hematology/Oncology Grand Rounds at Memorial Sloan-Kettering Cancer Center 2/4/14<span style="font-family: Trebuchet MS, sans-serif;">I was honored to be asked by ASCO President Dr. Cliff Hudis (<a href="https://twitter.com/cliffordhudis" target="_blank">@cliffordhudis</a> on Twitter) to give Grand Rounds at <a href="http://www.mskcc.org/" target="_blank">Memorial Sloan-Kettering Cancer Center</a> in New York on the topic of social media, on Tuesday Feb 4 at 8:00 am EST. The title of my talk is "<i>Connectivity, Collaboration, and Disruption: Social Media and the Oncologist</i>." As I did with the last few talks I've given, I created a special hashtag "#msk_hcsm14" which I will use to create a live Twitter stream that I hope more than a few people will follow and respond to during the actual presentation. Also, using Tweetdeck, I pre-scheduled a series of tweets with the hashtag to be posted during the presentation, containing many of my references and few additional links to extend the talk. While I don't really think anyone will be fooled into thinking that I am live-tweeting in the middle of my presentation - not that I and others haven't thought about it - I find this a fun and educational technique to try to jumpstart online dialogue. And after the session is over, I will create a <a href="http://storify.com/" target="_blank">Storify</a> of the collected tweets to share with the audience.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">I know a few MSKCC doctors on Twitter, but I don't know how active they might be during the presentation. I don't think the level of interactivity you see at large meetings like #ASCO13 or #MedX is very common at smaller sessions like this, but there is always a first time!</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<span style="font-family: Trebuchet MS, sans-serif;">So if anyone is reading this, feel free to join in the online Twitter conversation starting about 7:45 am on Tuesday 2/4/14. Be sure to save this hashtag and spread the word. Thanks.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>
<br />
<div style="text-align: center;">
<b><span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;">#msk_hcsm14</span></b><br />
<b><span style="font-family: Trebuchet MS, sans-serif; font-size: x-large;"><br /></span></b>
<div style="text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i>Addendum 2/6/14:</i></span></div>
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<span style="font-family: Verdana, sans-serif;"><i><br /></i></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i>I have posted my slides for my talk to <a href="http://www.slideshare.net/rsm2800/mskcc-rs-millerfinal" target="_blank">SlideShare</a>.</i></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i><br /></i></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i>The Storify for the hashtag #msk_hcsm14 is <a href="http://storify.com/rsm2800/why-does-social-media-matter-in-oncology" target="_blank">here</a>.</i></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i><br /></i></span></div>
<div style="text-align: left;">
<span style="font-family: Verdana, sans-serif;"><i>Spread the word and keep the convo going!</i></span></div>
</div>
Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com1tag:blogger.com,1999:blog-4600323293486553439.post-53562834736898221742014-01-02T23:40:00.003-05:002014-01-02T23:43:09.972-05:00The importance of philanthropy for funding cancer research in 2014+<span style="font-family: Verdana, sans-serif;">I probably received no fewer than 25 emails last week asking me to consider donating to a variety of charitable organizations before the stroke of midnight 12/31/13. “There’s still time for that end-of-the-year deduction.” **sigh** Every one of them, no doubt, is worthy, and most were from organizations I had some contact with in the past, either as a member, an alumnus, a prior donor, or some other connection. (The most amusing to me are the requests for donations from the colleges where my kids are currently students, frequently a request that comes by phone. I tell the earnest young men and women who are calling to “verify my address” that I already make regular donations, called tuition payments.)</span><br />
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<span style="font-family: Verdana, sans-serif;">It’s easy to tune out requests that come in waves at the end of the year, or if you are like me, you may have already made some decisions about where you might be willing to give. <b>But did you know one of the worthiest causes you can donate to is cancer research, specifically to the hospitals and medical centers where you or your loved ones may already be receiving their care?</b> Many people are surprised to find out that much research is funded not only by the Federal government and the pharmaceutical industry, but by donations large and small from grateful patients and family members. While most have heard that Federal dollars for biomedical research have have been drying up in recent years, you should realize how bleak the situation truly is. The American Society of Clinical Oncology (ASCO) <a href="http://www.asco.org/advocacy/its-time-re-ignite-our-nations-commitment-cancer-research" target="_blank">has pointed out</a> that the research budget from the National Institutes of Health is almost 25% lower today than 10 years ago when adjusted for inflation. This <a href="http://www.asco.org/sites/www.asco.org/files/cancer_research_threatened-ref-12_5_13_page_1_0.jpg" target="_blank">infographic</a> explains the issue pretty well.</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<span style="font-family: Verdana, sans-serif;">What can you do? I would of course support the idea that as citizens we should work through our elected representatives to send them the message that we can ill afford to continue to mortgage our future in this way, although realistically few of us may be motivated to do that. But you can also make a difference at the local level by donating directly to centers that are doing research and benefiting people in your own community. You don’t have to have millions or thousands or even hundreds. You might be surprised at how welcome and deeply appreciated even a seemingly modest donation to a local doctor or research program would be. Those of us who work in an academic medical center like Johns Hopkins are thrilled when we hear about people who want to help our work by supporting a small (or large) part of it financially. And here’s another thought - instead of remembering your oncologist or his/her office with a Christmas gift or donation of fruit or candy, consider making a donation to the research program that he or she is a part of. While I am always flattered and grateful when a patient buys me a tie or other thoughtful personal item, an even better gift is research support. It may not sound as personal or glamorous, but it is something that will long be remembered.</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<span style="font-family: Verdana, sans-serif;">When I moved from private practice in Sacramento to Johns Hopkins in 2009, quite of few of my California patients wrote me moving personal notes, every one of which I kept. Others bought me small gifts or similar items, again things that I really appreciated and still have. But the one gift I will never forget was from the couple (the husband was one of my patients, and I took care of one of his wife’s family members as well) that donated money in my honor to Johns Hopkins, before I even started working here. </span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<span style="font-family: Verdana, sans-serif;">So let make a very direct “pitch," and I'll be clear I am speaking as an individual, not as a faculty member of Johns Hopkins University (my employer) or as Editor-in-Chief of ASCO’s <a href="http://cancer.net/" target="_blank">Cancer.Net</a> (where I volunteer). I would ask you to consider giving to support research by donating to two worthy causes - the Kimmel Cancer Center at Johns Hopkins and ASCO’s Conquer Cancer Foundation, which in addition to supporting Cancer.Net’s patient education and advocacy efforts, has long supported the careers of gifted physician-scientists by funding their research.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<i><span style="font-family: Verdana, sans-serif;">You can learn about opportunities to donate to the Kimmel Cancer Center </span><a href="http://www.hopkinsmedicine.org/kimmel_cancer_center/our_center/charitable_giving/" style="font-family: Verdana, sans-serif;" target="_blank">here</a><span style="font-family: Verdana, sans-serif;"> (consider <a href="http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/breast_cancer_program/philanthropy.html" target="_blank">designating</a> that your gift be used for breast cancer research) or to the Conquer Cancer Foundation </span><a href="http://www.conquercancerfoundation.org/our-methodology" style="font-family: Verdana, sans-serif;" target="_blank">here</a><span style="font-family: Verdana, sans-serif;">. Thank you so much for your consideration.</span></i>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com2tag:blogger.com,1999:blog-4600323293486553439.post-69456145613850793722014-01-01T23:00:00.000-05:002014-01-01T23:00:57.752-05:00My Three Words for 2014<span style="font-family: Verdana, sans-serif;">It’s fashionable for anyone with a blog to post their New Years’ resolutions, but I have never been very original or consistent. (Looks like my last attempt was in <a href="http://connection.asco.org/Commentary/Article/id/2764/New-Years-Resolutions.aspx" target="_blank">2011</a> - that's lame.) So instead, I will follow the lead of <a href="http://www.chrisbrogan.com/my-3-words-2014/" target="_blank">Chris Brogan</a> and <a href="http://33charts.com/2014/01/my-3-words-for-2014.html" target="_blank">Bryan Vartabedian</a> and choose three words that I hope will be my guideposts for 2014:</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<span style="font-family: Verdana, sans-serif;"><b>Focus</b>. I will try to be less distractible and multi-task less this year. I will try to start every week by creating a short, <i>realistic</i> list of what I want to accomplish. Certain things will always pull me away from tasks, with patient care being the most important. But in my other jobs - EHR design/implementation at Hopkins, Cancer.Net editorship, JOP podcasts, social media research and evangelism - I will focus more on the task at hand, even if it’s only 20 minutes of uninterrupted thinking. And speaking of 20 minutes, I will try to spend 20 minutes every single day in the month of January writing (<a href="http://www.copyblogger.com/just-write/" target="_blank">here's</a> the source of that one). Not sure if that means that my blog will be any more successful, but a 20 minute goal is manageable.</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<span style="font-family: Verdana, sans-serif;"><b>Innovate</b>. I’ve never thought of myself as visionary or creative, since I’m more the slow, steady, and thorough type, but I will try to devote energy and personal resources to creating innovative ideas for the things that are important to me, including patient-centered care, consumer-health informatics and patient-reported outcomes, and the intersection of digital health and cancer care. I would like to look back at the end of 2014 and say these are the 5, 10, 20, whatever truly original ideas I came up with and what I did with them.</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<span style="font-family: Verdana, sans-serif;"><b>Recharge</b>. I will try to spend a fixed amount of time every week unplugging from what I have to do and do what I want to do (notice I didn’t specify the amount of time - I’m still trying to figure that out). I will recharge by exercise, listening to music, and reading for pure pleasure.</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<span style="font-family: Verdana, sans-serif;">Wish me luck…</span>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com2tag:blogger.com,1999:blog-4600323293486553439.post-54563148570900370212013-12-15T22:10:00.001-05:002013-12-17T20:04:06.618-05:00San Antonio Breast Cancer Symposium 2013<span style="font-family: Verdana, sans-serif;">This week I was happy to be able to attend my first-ever <a href="http://sabcs.org/index2.asp" target="_blank">San Antonio Breast Cancer Symposium</a>, which is probably the largest and most successful scientific conference devoted exclusively to breast cancer research and treatment. The meeting was exciting, intellectually stimulating, and full of great insights into both the basic and translational aspects of the disease and practical management. While I won't give in to hyperbole and say that there were "practice-changing" findings around every corner (a phrase I did hear a few times while there), a number of important research studies were discussed that I know will influence the care I give to breast cancer patients as soon as I return to my practice tomorrow.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">As expected, the backchannel of the Twitter stream (using the #SABCS13 hashtag) was very active, despite some annoying WiFi woes in the convention center, with over 5700 tweets and 16+ million impressions. Thanks to the folks at symplur.com, full analytics and a transcript of the tweets can be downloaded <a href="http://www.symplur.com/healthcare-hashtags/sabcs13/" target="_blank">here</a>. If you weren't following along live during the meeting, reading the Twitter stream can provide some interesting glimpses into the science that was presented and immediate reactions and commentary.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">There was plenty of media coverage from mainstream news sources, as well as specialty media like <a href="http://medpagetoday.com/" target="_blank">MedPageToday</a> and the <a href="http://ascopost.com/" target="_blank">ASCO Post</a>. Don't miss the <a href="http://sabcs.org/PressReleases/index.asp" target="_blank">press releases</a> from the Symposium web site or these helpful <a href="http://www.audio-digest.org/sabcs13" target="_blank">audio interviews </a>with some of the speakers.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">And finally, I am grateful to <a href="https://twitter.com/drattai" target="_blank">Dr. Deanna Attai</a>, breast surgeon and #BCSM Tweetchat co-moderator, for asking <a href="https://twitter.com/jrgralow" target="_blank">Dr. Julie Gralow</a> and me to write blog posts for the <a href="http://www.bcsmcommunity.org/" target="_blank">BCSM Community</a> site about some of the research findings presented. Rather than wasting electrons by duplicating my post here, I am linking to it <a href="http://www.bcsmcommunity.org/san-antonio-breast-cancer-symposium-highlights-by-dr-robert-miller/" target="_blank">here</a> on the BCSM Community blog page. Dr. Gralow's post can be found <a href="http://www.bcsmcommunity.org/san-antonio-breast-cancer-symposium-highlights-by-dr-julie-gralow/" target="_blank">here</a>. Feel free to comment below on my post or anything else you wanted to share about the Symposium and findings.</span>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-7468906848867127722013-12-04T23:23:00.000-05:002013-12-04T23:23:09.241-05:00My 12/4/13 talk at Johns Hopkins - "Social Media for Professional Education and Patient Engagement"<span style="font-family: Verdana, sans-serif;">Today I was honored to be able to give a talk at Johns Hopkins on the topic of healthcare-related social media. This was a joint seminar of the Cancer Outcomes and Health Services Research Interest Group and the J</span><span style="background-color: white; line-height: 24px;"><span style="font-family: Verdana, sans-serif;">ohns Hopkins Welch Center for Prevention, Epidemiology, and Clinical Research. I set up a Twitter feed in advance using the hashtag #cohsrig13 and prescheduled a series of tweets to go out with links to references for some of my slides. The audience was engaged and enthusiastic, and several of them live-tweeted my talk - which I strongly encouraged of course.</span></span><br />
<span style="background-color: white; line-height: 24px;"><span style="font-family: Verdana, sans-serif;"><br /></span></span>
<span style="background-color: white;"><span style="font-family: Verdana, sans-serif;"><span style="line-height: 24px;">I created a Storify with all of the tweets from today associated with the #cohsrig13 hashtag <a href="http://storify.com/rsm2800/social-media-for-professional-education-and-patien" target="_blank">here</a>. </span></span></span><br />
<span style="background-color: white;"><span style="font-family: Verdana, sans-serif;"><span style="line-height: 24px;"><br /></span></span></span>
<span style="background-color: white;"><span style="font-family: Verdana, sans-serif;"><span style="line-height: 24px;">I've prescheduled tweets when I've given talks before, and I think it's a potentially effective way to share references realtime and encourage interaction. I've never done a Storify before this but it's incredibly simple and seems to be useful for archiving this type of event. Let me know what you think.</span></span></span>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-773944494444028072013-11-28T13:50:00.000-05:002013-11-28T13:50:48.408-05:00Engage With Grace 2013<span style="font-family: Verdana, sans-serif;"><a href="http://rsm2800.blogspot.com/2012/11/thanks-to-matthew-holt-boltyboy-on.html" target="_blank">Last year for Thanksgiving</a>, I joined many other bloggers in sharing Engage With Grace, which encourages families as they join together for Thanksgiving to consider having the all-important conversation about their wishes for advanced care and end-of-life care. I'm trying to do my part for 2013 as well. A tougher, but more important, conversation can't be had. Please take a moment to read about <a href="http://www.engagewithgrace.org/" target="_blank">Engage With Grace</a> and the <a href="http://www.engagewithgrace.org/content/theoneslide.jpg" target="_blank">One Slide Project</a>, and consider having this conversation with your family as you finish your Thanksgiving feast. </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUZQdtc56_mc0v1O6qyKj1W2Yy7Qg4-tv8dya9uTEPPTtP_6lr3urca2oz0-dECa_F8u9XJsLjcnPovvZS_2da-nRCIJZk92dFqPJCS2NSipk9lBo2Npw9zHh6jQg1ep1zCuPjdAihQuU/s400/theoneslide.jpg" style="margin-left: auto; margin-right: auto;" width="400" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Engage With Grace</td></tr>
</tbody></table>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Answer and share the 5 questions <a href="http://www.engagewithgrace.org/Questions.aspx" target="_blank">here</a>.</span>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-57397290090474471782013-03-28T23:02:00.002-04:002013-03-28T23:02:12.715-04:00Podcast: Practical Guidance in the Use of Social Media in Oncology <span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This week we posted a <a href="http://jop.ascopubs.org/site/podcasts/index.xhtml" target="_blank">podcast</a> for ASCO's <i>Journal of Oncology Practice</i> on the topic of social media in oncology practice. This was based on an <a href="http://jop.ascopubs.org/content/8/5/e114.abstract" target="_blank">article</a> that was published September 2012 in JOP, co-authored by several members of the Integrated Media and Technology Committee from ASCO. I currently chair that committee and was honored to be included as an author. Three of the article's contributors joined me for a stimulating 45-minute conversation about the power (and perils) of using social media from the viewpoint of an oncology professional, incorporating as well how a professional society like ASCO employs these tools. My guests were Dr. Don Dizon (<a href="https://twitter.com/drdonsdizon" target="_blank">@drdonsdizon</a>), a medical oncologist at the Massachusetts General Hospital Cancer Center specializing in women's cancers and female sexual health, Dr. Mike Thompson (<a href="https://twitter.com/mtmdphd" target="_blank">@mtmdphd</a>), a medical oncologist in community practice in Wisconsin with an interest in hematologic malignancies and clinical trials, and Claire Johnston, Social Media Manager for ASCO.</span><div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">You can listen to the podcast <a href="http://jop.ascopubs.org/site/podcasts/index.xhtml" target="_blank">here</a> on the JOP website, or this <a href="https://itunes.apple.com/us/podcast/journal-oncology-practice/id403232505" target="_blank">link</a> will bring you to the iTunes store (you can also just search "<i>Journal of Oncology Practice</i>" on iTunes and find it that way). Also, please take a moment to read the full JOP <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3439237/" target="_blank">article</a>.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The conversation was wide ranging and covered many important points, including:</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<ul>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Why social media has become such an important form of communication in health care these days and the different ways physicians might use social media (patient care, health messaging for a lay audience, and professional networking/knowledge-sharing)</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">What are the special considerations for social media in the field of oncology in particular, compared with other medical specialties</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">What issues are raised when patients try to engage with their physicians using social media</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">What basic themes and principles we learned by examining the social media policies from about 35 other organizations ranging from the AMA to different hospitals and medical centers</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">What role social media plays as a member benefit and a communication/engagement tool for a professional society like ASCO</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">What special precautions must be kept in mind if you are using social media to spread the word about a clinical trial and improve recruitment</span></li>
</ul>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Hope you take the time to download the podcast and listen to it at the gym or driving to work! Your feedback is always welcome, either here or on the iTunes page.</span></div>
</div>
Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-10657419960888324622013-03-19T23:39:00.000-04:002013-03-19T23:39:35.964-04:00An Epic narrative<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">My professional life at Johns Hopkins has been largely consumed in recent months by preparations for the implementation of the <a href="http://www.hopkinsmedicine.org/epic" target="_blank">Epic electronic health record</a> (EHR) system. Our so-called "Ambulatory First" go live for all outpatient Hopkins clinics in the Baltimore-DC area begins 4/4/13 with the scheduling and registration system and then swings into full gear with the clinical roll-out of the EpicCare EHR at Green Spring (where I practice) on 5/16 and in East Baltimore at Johns Hopkins Hospital clinics on 6/27. If you've ever been part of a major EHR go-live at a hospital, clinic, or office, you know what a monumental undertaking this is and why "consumed" doesn't really do the experience justice. For Hopkins, we are transitioning from many years of doing things a certain way using a huge variety of legacy and/or best-of-breed electronic systems for data capture and analysis, including some homegrown ones and in some cases paper records, to a single, enterprise-wide, vendor system. It will impact every aspect of our clinical operation and touch everyone who works here, not just those in patient care. While I'm confident we will emerge in a much better place, I am not looking at the coming months with much joy.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Hopkins is doing this for all of the right reasons, many of which are listed at the link above. The most important reason is, of course, the patients, so that we can improve the safety, quality, and efficiency of the care we deliver. A single EHR will enable us to collaborate better with other physicians and engage patients by giving them greater access to their records and treatment team. In some ways I am most looking forward to the implementation of the patient portal myChart, since I think it will revolutionize access. As a patient of a Hopkins physician myself, I received an email today touting the benefits of the portal and encouraging me to sign up (yep, got that one covered).</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Sounds great, right? Well, not always. The reality is that many physicians are not very fond of EHRs, for a lot of complex reasons. To put it bluntly, many truly can't stand using them for patient care and rarely find much good to say about them. And it's not that physicians are inherently technophobic - quite the opposite, as virtually every physician I know owns a smartphone and tablet - but as a profession we are deeply skeptical of anything that slows us down and changes our workflow. A major EHR implementation like this has a huge impact on productivity for weeks if not months. And it's not just about the change process. The reality is that most EHRs, including this one, leave a lot to be desired in terms of usability (how easy it is to navigate and get through your work) and interoperability (how well these systems share data with each other). Physicians have to spend more and more time entering data at the point of care through menus, drop-down lists, and checkboxes, and - as many point out - less and less time interacting with and looking at the patient in the exam room instead of the computer. And in spite of the multimillion dollar investment this requires for a large health care system like Johns Hopkins, these systems still don't talk well with other non-Epic systems (true for other vendors as well). </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Certainly, there is another side of the story. For the first time ever, Hopkins physicians, nurses, pharmacists, and other allied health professionals will be able to access clinical information about a patient from any one of our clinics and hospitals, something that was virtually impossible to do before this. The reduction in duplicate labs and imaging tests should be immediate, as so often in the past, labs were repeated simply because we didn't have access to prior results. Electronic prescribing will be uniformly implemented, and medication reconciliation will finally become part of our everyday clinic workflows. And while it won't happen right away, Epic's data mining capabilities will allow us to track many aspects of care with ease, analyze trends across populations of patients with similar clinical characteristics, and hopefully soon link these routine clinical data with personalized genomic markers being identified in our labs. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I hope to write some future posts on this blog about different aspects of EHRs, like the Federal meaningful use incentive program and whether it is still "meaningful," why many doctors are disappointed with their existing systems (<a href="http://www.americanehr.com/blog/2013/03/himss13-ehr-satisfaction-diminishing/" target="_blank">here's</a> a teaser), why cost-savings and efficiencies EHRs were supposed to bring have, to date, not yet materialized, and why, in my opinion, greater penetration and implementation of EHRs is <i>mandatory</i> for the dysfunctional U.S. health care system to truly make our care patient-centered, something it obviously is not much of the time right now. Here's the take-home message for today: No industry in the U.S. in the 21st century is as dependent on paper-based record-keeping as health care </span><span style="font-family: Verdana, sans-serif;">historically</span><span style="font-family: Verdana, sans-serif;"> </span><span style="font-family: Verdana, sans-serif;">has been. Even the most strident critic of EHRs would have to acknowledge that there is no justification for continuing to use antiquated, analog workflows based on the classic paper hospital or office chart, a place where data go to die, locked in a single vessel that cannot be viewed by more than one user at a time and not manipulated, analyzed, or transmitted (sorry, your 1980s fax machine doesn't count). U.S. health care has no choice but to adopt a fully digital infrastructure to achieve the goals of what some call the </span><a href="http://www.ihi.org/offerings/Initiatives/TripleAim/Pages/default.aspx" style="font-family: Verdana, sans-serif;" target="_blank">Triple Aim</a><span style="font-family: Verdana, sans-serif;">: higher quality and greater patient satisfaction, better population health, and lower cost. Clinicians must lead from within, by being fully engaged in system selection, design, and implementation, and not defer to the "IT team" or administrative managers. At a higher level, the physician voice must be heard by vendors and policymakers. I disagree with those that claim our input is useless. I acknowledge that it's difficult to move along a monolithic, billion dollar vendor when you're a single voice but it's not hopeless. Frontline clinicians are the only ones who really know what it takes to take care of patients. We should be the ones who are in the front leading change in health IT. Sniping from the sidelines, griping anonymously in comment sections on NY Times articles, or tagging tweets with #EHRbacklash may feel good momentarily but isn't going to help our patients or make our lives easier.</span><br />
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<span style="font-family: Verdana, sans-serif;">To be clear, I'm not talking about my colleagues at Hopkins who have generally been open to this implementation, even though they have been understandably apprehensive about the impact on clinic throughput and efficiency. I know they will rise to the occasion and do the right thing since that's our culture. But bashing health IT and meaningful use has become fashionable in the blogosphere and popular press these days, and it is becoming relentless. So here's my call to action: Physician colleagues, step up and engage. I understand your reservations, but I think our patients deserve better. They deserve our professionalism and resolve to make an impact on the current state, not skepticism and griping. They need us to take ownership of this transformation, so it happens with us and by us...not to us.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-85642397755091201792013-03-09T20:09:00.001-05:002013-03-09T20:09:09.373-05:00Free Online Nutrition Webinar for Cancer Patients from Johns Hopkins<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Johns Hopkins nutritionist Mary-Eve Brown, RD, will host a nutrition webinar "What’s Food Got To Do With It: </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Eating Healthy During & After Cancer Treatment" Tuesday <span class="Apple-style-span" style="color: blue; font-size: large;"><b>March 12, 2013</b></span> from 7:00-8:00 pm EDT. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This presentation is open to all cancer patients, </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">survivors, caregivers, and medical providers. A live Q&A will follow after the presentation. There is no cost! More information including an information flyer and links to the registration page can be found <a href="http://www.hopkinsmedicine.org/avon_foundation_breast_center/patient_information/videos/survivorship_seminars.html" target="_blank">here</a>. </span>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-65273758615511956072013-03-05T00:05:00.002-05:002013-03-05T00:05:43.375-05:004 Common Myths About Cancer Doctors<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I read this simple but effective <a href="http://www2.mdanderson.org/cancerwise/2013/03/common-myths-about-cancer-doctors.html" target="_blank">blog post today</a> from MD Anderson's very nice <a href="http://www2.mdanderson.org/cancerwise" target="_blank">Cancerwise</a> blog, which I follow regularly. In it, Dr. Nikesh Jasani, who is a medical oncologist and Assistant Professor in the Department of General Oncology at MD Anderson, talks about four misconceptions that patients sometimes have about their oncologists:</span><br />
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<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"We don't want to be bothered with small stuff." I try to tell my patients that I would much rather hear about symptoms that they think are trivial or that make them nervous than find out they spent a long time discussing with family and worrying whether they should bother me in the first place.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"We don't collaborate." We could always do a better job with this one, but I make an effort to keep the other members of the treatment team in the loop, particularly with test results.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"We don't care about our patients' time." I hate running late and delaying the next patient. But when I'm in the exam room with you, I will do my best to give you as much time as you need to cover your questions. It evens out.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"We don't like you to get a second opinion." Never a problem.</span></li>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Thanks to Dr. Jasani and the MD Anderson folks for sharing.</span></div>
Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-57460765078676953092013-02-11T20:36:00.001-05:002013-02-11T20:48:07.230-05:00ASCO & the Conquer Cancer Foundation Enable Free Full Text for ASCO Journals<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This is welcome and really exciting news from a clinician and patient empowerment perspective. The American Society of Clinical Oncology (ASCO) and ASCO's Conquer Cancer Foundation have announced the PatientACCESS initiative enabling free full text access to ASCO's two primary journals. You can read the details <a href="http://www.cancer.net/publications-and-resources/patientaccess" target="_blank">here</a> on Cancer.Net. Through an agreement between ASCO, the American Association for Cancer Research (AACR), four other publishers, and the Copyright Clearance Center, patients and their caregivers can now get full access to research articles published in ASCO's <i><a href="http://jco.ascopubs.org/" target="_blank">Journal of Clinical Oncology</a></i> (JCO) and <i><a href="http://jop.ascopubs.org/" target="_blank">Journal of Oncology Practice</a></i> (JOP). Previously, access to abstracts was free for all, but full text access at the time of publication was available only to dues-paying ASCO members and those with institutional subscriptions, such as libraries, hospitals, and medical schools. Non-subscribers wanting access would either have to either pay a per-article fee, which could be pretty hefty, or wait 12 months when open access was available to all. Now, by clicking the "PatientACCESS" link at the bottom of the abstract page, you will be taken to the RightsLink website, and after agreeing to the Terms and Conditions, you will receive a copy of the article as a PDF delivered via email. (Also, it's important to note that some JCO content, such as ASCO Special Articles, Editorials, Comments and Controversies papers, the Art of Oncology series, and Correspondence has always been free; that's not changing.)</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The JCO is ASCO's flagship journal where cancer research findings are published, and it's one of the most widely read and cited cancer journals in the world. The JOP is a newer journal, and it focuses on the mechanics of oncology practice, including such topics as health care delivery, quality of care, and business practices. Both journals are indexed in the National Library of Medicine through Medline and can be accessed via <a href="http://www.ncbi.nlm.nih.gov/pubmed" target="_blank">PubMed</a> or their individual web sites above.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">For the JCO in particular, it's nice for patients to now have full access to the same articles their doctors are reading. While an abstract can convey the main points, the full detail of the study, including background, methods, results, and discussion, is now available. If you read about a study only by reviewing the abstract, you can miss some of the nuances and clinical implications - true for clinicians and patients alike.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A number of people have rightfully criticized the "paywall" that keeps this research from being freely available to all. The argument is that, since much biomedical research is paid for using taxpayers' dollars, they have every right to see the results as soon as they come out. There was lively discussion about this on the #hcsm Tweetchat last night. That argument makes a lot of sense, although it's not always that simple. JCO and JOP, for example, are self-published by ASCO, and they are a benefit of membership. Membership dues, in addition to advertising, support their publication. Even if the print version was discontinued (and despite this being the digital era, many subscribers do not want to part with their paper issues just yet), there is obviously a cost to produce a scientific journal that has to be borne by someone. This economic reality isn't going away anytime soon, but it is great news that at least for patients, caregivers, and advocates, they can get full, free direct access to these JCO and JOP research articles, which might very well have immediate relevance to their health.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Spread the word!</span>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com2tag:blogger.com,1999:blog-4600323293486553439.post-69247447563700058292013-01-20T14:34:00.000-05:002013-01-20T14:34:12.037-05:00Social tool or social isolation?<br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">While most of my colleagues at Hopkins are aware of my social media activities, and I did give a shortened version of my 2012 UC Irvine Grand Rounds talk <i><a href="http://rsm2800.blogspot.com/2012/10/help-me-show-group-of-physicians-power.html" target="_blank">Social Media and the Digital Physician</a></i> at a Hopkins breast cancer conference in November, I usually keep a low profile about what I do on Twitter and this blog. Two to three members of the Hopkins breast cancer group are active on Twitter or have blogs, although most of my group doesn't really participate except perhaps for occasional lurking as far as I know. So I thought it was interesting to share on our breast cancer listserv a tweet I wrote last week about the Albert Einstein College of Medicine's presentation <i><a href="http://www.slideshare.net/EinsteinYeshiva/twitter-2-final-for-s-share-1-16-13-430p" target="_blank">Taking Twitter to the Next Level: A Hands-on Workshop</a>.</i> (Props to my Twitter friends Paul Moniz and David Flores for a great slide deck.) I also linked to Vineet Aurora's (@FutureDocs on Twitter) blog and her <i><a href="http://futuredocsblog.com/top-twitter-myths-tips" target="_blank">Top Twitter Myths and Tips</a></i>. That led to a little discussion among our group about the (perceived) time commitment required for social media. Here's my reply:</span><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">OK, I’ll bite (and if everyone else on this listserv find this tedious, I’m sorry and I promise not to make this a soapbox)…<br /><br />First of all the time issue, I agree if you spend a lot of time on social media at the expense of things that you should be doing like time with family or exercising, that’s not good. On the other hand, like Antonio said, I think we all waste a lot of time aimlessly online, web-surfing to things peripherally related to professional or personal interests – at least that’s what I would do 10 years ago. With Twitter, you follow a group of people and/or organizations, generally those that share some of your interests or in whom you find something appealing, useful, interesting, quirky, etc., that then bring content to you via their tweets. Not talking about this replacing purposeful use of the Internet like looking up a specific clinical/scientific question, doing research, etc. which of course I still do as much as ever. But when I want to stay up to date or let myself become exposed to ideas, news stories, articles in journals I don’t regularly read, policy statements, etc. Twitter is a great way to do it. When do I do it? In the morning at 6:00 a.m. before my wife is up and the paper gets here, when I’m eating lunch for 20 minutes at my desk, scattered times during the work day, and right before I go to bed. The great things about Twitter is it’s always on, and you can read it for 1 minute or 30 at a time. And I post on Twitter sporadically during the day. When I am reading something online be it a JOP/JCO article, someone else’s blog post, a news story – be it medicine, science, informatics, a personal interest like certain types of music – I click the Tweet button on my iPhone and share it.<br /><br />Now creating something more than Twitter does take time. Like I said in my talk, I do a monthly podcast interview for Journal of Oncology Practice for ASCO where I interview authors of articles. That’s social media but it’s more organized and formal within my volunteer work at ASCO, so that’s not for most people. And having started my own blog this year, that takes a lot of time to do it well. I’m still feeling my way, and realize there is no way I am going to be able to write blog posts every day or two, but so far I have come up with a tiny bit of a following in the past 6 months by posting a few times a month and getting lots of people to read my blog and share the posts.<br /><br />Re the question of whether social media is a transient distraction aimed only at youth, that train has left the station – it ain’t. It’s a worldwide cultural phenomenon that has touched every industry, nation, social class, etc. Do you all as clinicians, scientists, or other healthcare professionals need to do this to remain relevant for your jobs and for your personal lives? Maybe not yet, but I am of the belief that is changing fast. While we are somewhat protected as being members of the Johns Hopkins community in that our institution has a vibrant social media presence for us, I would submit that by not at least sampling it as an individual, you are missing out on a lot. I also believe you are missing a lot of opportunities for networking and professional growth. That part has been amazing.<br /><br />In addition to the slides I linked to below, also take a look at this link for a quick view of Twitter by another academic physician: <a href="http://futuredocsblog.com/top-twitter-myths-tips">http://futuredocsblog.com/top-twitter-myths-tips</a>. Or follow the blog of someone like Dr. Bryan Vartabedian at <a href="http://www.33charts.com/">www.33charts.com</a> for a real visionary. Or, ahem, follow me on Twitter (@rsm2800) or read my <a href="http://rsm2800.blogspot.com/" target="_blank">blog</a>.<br /><br />[puts soapbox away and resumes normal life]</span></blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So as I was thinking about social media communities and health care professional engagement, I came across this provocative opinion piece in <a href="http://www.washingtonpost.com/opinions/why-do-we-still-know-so-little-about-adam-lanza-because-he-lived-in-the-cloud/2013/01/18/34b722ee-5f51-11e2-a389-ee565c81c565_story.html" target="_blank">this morning's Washington Post</a>, "Why do we still know so little about Adam Lanza? Because he lived in the cloud." It looks like it's freely available, so it's worth a read if you are able to endure another story related to the horror of the Connecticut shootings. The central thesis of the piece is that one of the reasons we seem to have learned so little about the shooter is that his interactions were essentially all virtual - because they could be. The author goes on to cite experts on both sides of this issue, those that claim that the availablility of virtual communities and social networks promotes social isolation in the real world and those that claim just the opposite. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This article is interesting but purely speculative, since the police report on the Newtown massacre hasn't been released yet, and to date there is little confirmation of any of this. I'm not suggesting by juxtaposing my earlier comments about the importance of Twitter to healthcare professionals and patients that there is any connection with psychopathic shooters at all. But I do think this - we need a lot more research to understand how social networks and connections work in healthcare and medicine. While I admit I am an enthusiast and see the potential promise for improved health outcomes, professional connection leading to collaboration, and a breaking down of barriers between physicians, researcher, and patients, like any cultural phenomenon there is a dark side that needs to be illuminated, studied, channelled into something better (if it can), or parts of it walled off if it can't. I know that in addition to the concern about the time commitment and misperception of purpose (i.e., Twitter is only for 20-somethings talking about what they had for breakfast) these are reasons why some of my colleagues assiduously eschew social media for now. I am just concerned that the honeymoon between healthcare-related social media (aka the <a href="https://twitter.com/search?q=%23hcsm&src=savs" target="_blank">Twitter hashtag #hcsm</a>) and early adopters like me might be winding down. The existence and promise of a phenomenon is not sufficient to justify its continued promulgation in something as important as patient care and research. I do believe that we will ultimately conclude that #hcsm is a tool and communication channel worth using in healthcare, medicine, and science. But we better get to work examining and proving hypotheses about it before another Washington Post columnist starts some darkly-tinged speculation on what we having been doing so far with it.</span><br />
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Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com1tag:blogger.com,1999:blog-4600323293486553439.post-5266660839951776012013-01-10T00:02:00.001-05:002013-01-10T00:09:21.134-05:00Unanswered questions<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I've been reflecting on the fact that for so many of the common clinical situations I face every week as a breast cancer oncologist, I don't have the answers. Despite great advances in understanding the biology of breast cancer and refining of the diagnostics and therapeutics, there are so many questions that come up in everyday practice that leave me in and my colleagues in the dark:</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Which ER positive, node negative patients really need chemo in addition to hormonal therapy?</b></span> </blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>How do you predict in advance which patients are going to develop dose-limiting toxicity from breast cancer treatment, like intractable joint symptoms from AI's or neuropathy from Taxol?</b></span> </blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>What's the final word on CYP2D6 and tamoxifen?</b></span> </blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>How do I help patients lose the weight they gained during adjuvant chemo or hormonal therapy?</b></span> </blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Who should get an MRI or US in addition to mammogram?</b></span></blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>What's the best sequence of hormonal therapy for postmenopausal women with metastatic breast cancer?</b></span></blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Is there harm in delaying the start of adjuvant chemotherapy following definitive local therapy more than 4-6 weeks?</b></span></blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Should you give adjuvant trastuzumab to women with HER2 positive cancers less than 1 cm?</b></span></blockquote>
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<b><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Is more than five years of an aromatase inhibitor better than 5 years in the adjuvant setting?</span> </b></blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Is a negative margin following lumpectomy defined as 2 mm, 1 mm, or just no tumor at ink?</b></span></blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Should you do an Oncotype for every healthy patient with an ER positive, node negative tumor between 5 and 10 mm in size or just some?</b></span></blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>What's the role for local therapy of the primary tumor in the asymptomatic patient with metastatic disease?</b></span></blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>What's the best systemic management for metaplastic carcinoma?</b> </span></blockquote>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This list could be endless. These are extremely common scenarios every oncologist who treats breast cancer sees over and over, and we don't know the "right" answer to any one of them. We have <i>some</i> ideas for most of them, and we certainly have plenty of clues as to how to try to figure out many. For some, it's easy to envision that clinical trials may eventually provide an answer, such as the optimal duration of AI's or the management of small HER2 positive tumors, but it will take years. Some of these may become less relevant as technology advances. For example, as we develop more sophisticated imaging, the current dilemmas about false positives with MRI will likely fade. As we develop better predictive markers than Oncotype and Mammaprint (or at least when we learn how to use those two optimally), adjuvant chemotherapy decisions will become much less ambiguous. As we start to understand predictors of toxicity such as which SNPs predispose patients to neuropathy (and we already have some <a href="http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=102&abstractID=78499" target="_blank">good information</a> for that one), we can be more selective about which patients we expose to drugs like taxanes.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">But until then, every week in my clinic, I have to tell my patients that I don't really have answers to these questions. And as distressing as it can be for me as a healthcare professional to constantly repeat the "We don't know" refrain, it is far more than that for the patient and family who are on the receiving end of my non-answer. It is annoying, disconcerting, frightening, frustrating, and maddening, at many levels. And probably quite a few more emotions than that. </span><br />
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Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com3tag:blogger.com,1999:blog-4600323293486553439.post-44665471914804322222013-01-04T21:58:00.001-05:002013-01-04T21:58:47.429-05:00Health IT predictions for 2013<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If you don't read the web site of <a href="http://www.ihealthbeat.org/" target="_blank">iHealthBeat</a> or follow their Twitter feed at <a href="https://twitter.com/ihealthbeat" target="_blank">@iHealthBeat</a> you really should. It's a daily news digest </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">from</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> the <a href="http://www.chcf.org/" target="_blank">California HealthCare Foundation</a> covering</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> the impact of technology on healthcare. Their report from yesterday 1/3/13 is a really interesting read - </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"<a href="http://www.ihealthbeat.org/features/2013/11-experts-on-health-it-progress-frustrations-and-hopes-for-2013.aspx" target="_blank">11 Experts on Health IT Progress, Frustrations and Hopes for 2013</a>." It starts with a brief digest of some of the important health IT stories from 2012, and then goes on to cover the responses from a panel of 11 diverse thought leaders on three questions:</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<ol>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">What was the most significant health IT development over the past year?</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">What was the biggest disappointment or missed opportunity in the health IT space in 2012?</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Looking forward to 2013, what are the biggest remaining barriers to widespread adoption and meaningful use of health IT? And, what can be done to help address those challenges?</span></li>
</ol>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /><div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The panel ranges from e-Patient Dave to John Sharp (research informaticist at the Cleveland Clinic) to Janet Marchibroda (chair of the Bipartisan Policy Center's Health IT Initiative).</span></div>
<div>
<br /></div>
<div>
A few themes emerge:</div>
<div>
<ul>
<li>The importance of patient empowerment and engagement, particularly as incorporated into Meaningful Use Stage 2 requirements</li>
<li>The proliferation of and opportunities presented by mobile health technology</li>
<li>Controversies over the delayed implementation of ICD-10</li>
<li>Issues of privacy and security</li>
<li>The uncertain impact of Accountable Care Organizations</li>
<li>The ability of EHR's to facilitate potentially fraudulent upcoding for services (comments on both sides of this issue)</li>
</ul>
<div>
<br /></div>
<div>
There seems little doubt that in 2013 technology will continue to be a key theme of healthcare delivery and policymaking at every level.</div>
</div>
</span><br />
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<!--EndFragment-->Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-67087093162864215812012-12-26T09:05:00.001-05:002015-01-02T11:01:22.026-05:00My (informal) social media policy<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I use social media - mostly Twitter and this blog - to share content (journal articles, news stories, blogs, tweets, pictures, videos, etc.) that I find interesting and worthy of dissemination. For Twitter, I often make the decision as to its worthiness at the moment I am reading it, so it is usually unfiltered and spontaneous. However:</span><br />
<ul>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Sharing it does not mean I endorse it, agree with it, or necessarily believe it represents a balanced or carefully researched viewpoint.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">RT in Twitter does not mean I endorse the tweet or the link contained in the tweet. It just means I think it is something my followers should see.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"Favoriting" a tweet does not mean I approve it; usually it just means I intend to read it later. Sometimes I RT or marked a tweet as a favorite only for note-taking purposes.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If I share it, I usually will have read the linked article completely enough to understand the main points and general concepts the author(s) intend to convey. However, there are exceptions - I may RT something that looks particularly interesting or provocative without reading it in detail, but usually only if I am familiar with the source.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Since tweets are only 140 characters, it is often difficult to convey nuance or detail, and read out of context are by definition prone to misinterpretation.</span></li>
</ul>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">My audience is both a professional audience (other physicians or healthcare/IT specialists) and a lay audience (patients). Whenever I tweet or write a blog post, I do not intentionally create the content exclusively for one audience or the other. I recognize there is a lot of overlap in interests, and I believe that is a good thing.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Sometimes I will link to articles that require a personal or institutional subscription to view the full text, or as some call it, articles that are behind a "paywall." I do regret that all of my readers will then not have full access to what I am sharing, but that is the reality of publication today. I'm not going to wade into that discussion here, but I will say that I recognize current business models mean that many journals can't stay afloat financially without advertising directed at paid subscribers. Sorry folks. </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I will not share any patient-specific information, and certainly not anything that would run afoul of HIPAA. Patient privacy is a sacred trust for physicians, and protecting that is my highest priority.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Moreover, while I may share some perspectives and experiences surrounding patients I have encountered, I will do so in a general way, and individual patients should not be able to identify themselves. I realize that it is still possible to reveal enough information in a scenario or vignette to violate privacy without including a patient-specific identifier, so I won't do that.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If I do share a vignette or patient story, it will be a conglomeration of multiple patients or it will be otherwise fictionalized so that an individual won't be able to identify him- or herself. The exception would be if I chose to share a specific patient story with the explicit permission of that patient.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Tweets or blog posts do not represent medical advice. Any interactions I may have with individuals on this blog or Twitter are of a general nature about the health condition but not <i>your</i> health condition. These interactions do not constitute a doctor-patient relationship. You should always consult with your personal physician for questions about your health.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">My blog posts and tweets are my opinion only and not that of any other person or organization. They do not represent the opinion of the Johns Hopkins University School of Medicine (my employer) or the American Society of Clinical Oncology (where I volunteer). I am not speaking on behalf of Hopkins or ASCO. I do attempt to honor the social media policies of both organizations, however.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">While some have advocated that physicians and other professionals have completely separate social media accounts for their personal and professional uses, I don't totally agree with that (who has the time). I have one blog (this one) and one main Twitter account (@rsm2800). I do use LinkedIn for professional contacts and Facebook on occasion for keeping in touch with friends. However, on LinkedIn I generally only accept connections from people with whom I have a prior or existing business relationship, and I only accept friend requests on Facebook from personal friends.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b><i>I am honored to have my patients read my blog or follow me on Twitter, but I do not practice medicine using social media. If you are a patient and you need to contact me about a specific health concern, please DO NOT do so on those channels since I cannot guarantee your privacy or assure you a timely enough response. (At the time of your visit, we will discuss the best way of reaching me or my office - a phone call is always the safest and most direct.) Also for reasons of privacy - yours and mine - I do not accept LinkedIn connection requests or Facebook friend requests from existing or past patients. </i></b></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I enjoy being visible on social media and interacting with Twitter followers and readers of this blog, but that doesn't mean I am available 24/7. I have a demanding job and like everyone else I need to tune out at times, not think about work, not read email etc. Some of those times I may still be on social media, so you may see me there even if I am not in the clinic, answering email, etc. If I have any email unavailability longer than an overnight or a weekend, I will use my Out of Office message so you can know when that is. For my Hopkins patients, there is always an oncologist on call 24/7, who can be reached by calling my office number day or night, so if I am not around, someone else covering for me will be.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">And finally…</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Remember that the strength of social media is its immediacy and accessibility, and the content shared is often spontaneous and unpolished. The ideas may be further developed by sharing and interaction (RT's, blog comments, etc.), and that means that the tone and conclusions may evolve. Pediatrician and social media expert Dr. Bryan Vartabedian calls this "<a href="http://33charts.com/2012/11/public-doctors-public-thinking.html" target="_blank">public thinking</a>," and I would agree with his premise that physicians are starting to have an obligation to connect and spread ideas in this very transparent and public space. But by definition, that makes social media a much different communication channel for me as a physician than traditional ones - interacting one on one with a patient in the exam room, publishing in the scientific literature, or speaking at a conference. So while I will always endeavor to make the content I share publicly on social media accurate, timely, and relevant, readers of this blog and my Twitter stream must appreciate the differences between the traditional and social channels. And it is important to do both well!</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">+++++++++++++++++++++++++++++++++++++++++++++++++</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>[UPDATE 1/2/2015]</b></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b><br /></b></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>On 12/3/2014 I became a full-time employee of the American Society of Clinical Oncology (ASCO), meaning that my previous employment at Johns Hopkins has ended. My position at ASCO is Senior Director, Quality and Guidelines and Medical Director, CancerLinQ. From time to time, I will continue to update this blog, Perspicacity. I remain active on Twitter at @rsm2800. The views I express on any and all of my social media </b></span><span style="font-family: Verdana, sans-serif;"><b>channels are personal views and do not necessarily represent the views of ASCO. I am not speaking on behalf of ASCO. As noted above, "retweeting" or "favoriting" on Twitter does not mean I endorse the content of the tweet. "Following" another user on Twitter does not mean I agree with the positions or policies of that person or organization. And tweets/blog posts never represent medical advice.</b></span></div>
Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com2tag:blogger.com,1999:blog-4600323293486553439.post-44954495791364931842012-12-20T14:03:00.000-05:002012-12-20T14:03:26.242-05:00Electronic Health Records Infographic<span style="font-family: Verdana, sans-serif;">The blogs that I read regularly are full of posts from physicians bemoaning the shortcomings of electronic health records, from poor usability to exorbitant costs to the impact on face-to-face (or at least eye-to-eye) contact with patients. As someone heavily involved in the design and implementation of the Epic system at Johns Hopkins, I know most of these comments represent an accurate depiction of a technology that is a long way from achieving its stated goals of increasing interoperability, enhancing patient safety, and ultimately improving patient outcomes. But this great infographic from the <a href="http://www.healthit.gov/newsroom/about-onc" target="_blank">Office of the National Coordinator for Health Information Technology (ONC)</a> reminds us that despite all of their faults, EHR's are able to connect patients and doctors much more effectively than paper records ever could, and there is no turning back if medicine wants to thrive in the 21st century.</span><br />
<br />
<iframe frameborder="0" height="1970" scrolling="no" src="http://www.healthit.gov/embed/" style="border: 0; height: 1970px; overflow: hidden; width: 500px;" width="500"></iframe>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-51903637039624664742012-11-21T15:30:00.001-05:002012-11-21T15:32:47.082-05:00Engage With Grace<p><strong>Thanks to Matthew Holt (@boltyboy on Twitter), founder and publisher of The Health Care Blog, for allowing this to be shared. A more important conversation cannot be had with family and loved ones this Thanksgiving. --Bob Miller</strong></em></p><br><div class="byline">
By <span class="byline author">Alexandra Drane</span><img alt="" class="alignright size-full wp-image-54861" height="146" src="http://thehealthcareblog.com/files/2012/11/Screen-Shot-2012-11-21-at-9.17.20-AM.png" style="margin: 15px;" title="Screen Shot 2012-11-21 at 9.17.20 AM" width="214" /></div>
<div class="byline">
<em><p>Once again we're hosting the annual <a href="http://www.engagewithgrace.org/">Engage with Grace</a> blogrally. Engage with Grace aims to get people talking about their wishes for end of life and advanced care. If you want to host this on your blog please do and feel free to get the html for this post here --<strong>Matthew Holt</strong></em><p></div>
One of our favorite things we ever heard <a href="http://www.youtube.com/watch?v=D1R-jKKp3NA">Steve Jobs say</a> is… ‘If you live each day as if it was your last, someday you'll most certainly be right.’ We love it for three reasons: 1) It reminds all of us that living with intention is one of the most important things we can do. 2) It reminds all of us that one day will be our last. 3) It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.
<p>Most of us do pretty well with the living with intention part – but the dying thing? Not so much. And maybe that doesn't bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people….</p>
<p>Then one day it does – happen to someone else. But it’s someone that we love. And everything about our perspective on end of life changes.</p>
<p>If you haven’t personally had the experience of seeing or helping a loved one navigate the incredible complexities of terminal illness, then just ask someone who has. Chances are nearly 3 out of 4 of those stories will be bad ones – involving actions and decisions that were at odds with that person’s values. And the worst part about it? Most of this mess is unintentional – no one is deliberately trying to make anyone else suffer – it’s just that few of us are taking the time to figure out our own preferences for what we’d like when our time is near, making sure those preferences are known, and appointing someone to advocate on our behalf.</p>
<p>Goodness, you might be wondering, just what are we getting at and why are we keeping you from stretching out on the couch preparing your belly for onslaught?</p>
<p>Thanksgiving is a time for gathering, for communing, and for thinking hard together with friends and family about the things that matter. Here’s the crazy thing - in the wake of one of the most intense political seasons in recent history, one of the safest topics to debate around the table this year might just be that one last taboo: end of life planning. And you know what? It’s also one of the most important.</p>
<p>Here’s one debate nobody wants to have – deciding on behalf of a loved one how to handle tough decisions at the end of their life. And there is no greater gift you can give your loved ones than saving them from that agony. So let’s take that off the table right now, this weekend. Know what you want at the end of your life; know the preferences of your loved ones. Print out this <a href="http://engagewithgrace.org/Questions.aspx">one slide</a> with just these five questions on it.</p>
<p>Have the conversation with your family. Now. Not a year from now, not when you or a loved one are diagnosed with something, not at the bedside of a mother or a father or a sibling or a life-long partner…but NOW. Have it this Thanksgiving when you are gathered together as a family, with your loved ones. Why? Because now is when it matters. This is the conversation to have when you don’t need to have it. And, believe it or not, when it’s a hypothetical conversation – you might even find it fascinating. We find sharing almost everything else about ourselves fascinating – why not this, too? And then, one day, when the real stuff happens? You’ll be ready.</p>
<p>Doing end of life better is important for all of us. And the good news is that for all the squeamishness we think people have around this issue, the tide is changing, and more and more people are realizing that as a country dedicated to living with great intention – we need to apply that same sense of purpose and honor to how we die.</p>
<p>One day, Rosa Parks refused to move her seat on a bus in Montgomery County, Alabama. Others had before. Why was this day different? Because her story tapped into a million other stories that together sparked a revolution that changed the course of history.</p>
<p>Each of us has a story – it has a beginning, a middle, and an end. We work so hard to design a beautiful life – spend the time to design a beautiful end, too. Know the answers to just these five questions for yourself, and for your loved ones. Commit to advocating for each other. Then pass it on. Let’s start a revolution.</p>
<p>Engage with Grace.</p>
<em>Alexandra Drane is the Founder of Engage with Grace</em>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-44773977205952859342012-11-20T00:38:00.000-05:002012-11-20T06:15:58.892-05:00ASCO guidelines for breast cancer follow-up: Solid science & rational skepticism<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The <a href="http://www.asco.org/" target="_blank">American Society of Clinical Oncology</a> (ASCO), the primary professional society representing doctors who care for people with cancer, periodically publishes <a href="http://www.asco.org/ASCOv2/Practice+%26+Guidelines/Guidelines" target="_blank">guidelines</a> for common clinical situations encountered by oncologists. The ASCO guidelines are a summary of best practices based on the latest and most thorough analysis of the scientific evidence currently available. ASCO creates its guidelines using a very rigorous and time-consuming workflow by first identifying and analyzing relevant research findings, crafting them into a format that is practical and accessible for patient care, and then submitting them for multiple layers of editorial review. By comparison, guidelines from the <a href="http://www.nccn.org/" target="_blank">National Comprehensive Cancer Network</a> (NCCN), an alliance of 21 different leading cancer centers, including my own institution Johns Hopkins, are created by panels of disease experts based on their consensus opinion. Both processes have a lot of value and are widely used, and to some extent they complement each other. The NCCN guidelines are much more numerous than ASCO's, and they not only address the treatment of different cancers by primary site but also cancer detection, prevention, risk reduction, and supportive care. NCCN also provides a <a href="http://www.nccn.org/patients/default.asp" target="_blank">version</a> of their guidelines for patients. The ASCO guidelines are fewer in number than NCCN and deal with more selective situations, and in part this is due to the different methods used for their creation.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Why are there guidelines for the management of cancer in the first place? The most important reason is that it's a way of standardizing clinical care for common tumors, and since the guidelines are created by recognized experts from respected organizations like ASCO and NCCN, there is usually little controversy that they represent best practices based on the most current knowledge. Here's a good description from an <a href="http://jop.ascopubs.org/content/8/6/354.extract" target="_blank">article</a> by Drs. Irwin and Peppercorn in the November 2012 <i>Journal of Oncology Practice</i> entitled "Promise and Perils of Guidelines in Quality Cancer Care:"</span><br />
<blockquote class="tr_bq">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #403838; font-family: Helvetica, 'Lucida Sans Unicode', Verdana, Arial, 'Lucida Grande', Tahoma, sans-serif; font-size: 13px; line-height: 19px;"><b>Such guidelines are currently used to encourage high-quality, evidence-based management that will increase the use of proven interventions while curtailing use of those that lack evidence or are known to be ineffective.</b></span></span></blockquote>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As the authors point out, some evidence exists that adherence to guidelines improves patient outcomes, although that is harder to prove than you might expect. No doubt, guidelines can serve as a deterrent to inappropriate and/or costly, unnecessary care, and they potentially offer physicians protection against medicolegal risks. The authors also cite some theoretical risks of standardized treatment guidelines, which you can read in the full text of the article.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">ASCO recently updated their guidelines for the follow-up care of patients with breast cancer who have completed their primary therapy, whether that is surgery, radiation, chemotherapy, or hormonal treatment, or some combination of these. Basically, the population addressed is the very large number of women (and a few men) who have completed the active phase of treatment and who have no evidence of disease, "NED" in oncologist-speak. Generally these are patients who are treated with "curative intent," meaning that their therapy was delivered with the reasonable expectation that it would result in complete eradication of the cancer. Unfortunately, we know that does not always happen, and recurrence after primary treatment, sometimes many years later, is an unfortunate and feared event. Given how prevalent breast cancer is and how the majority of patients do end up going through one of these life-altering treatments, it is critically important to have some guidance as to the most appropriate follow-up care. These guidelines address such things as how often a patient who has completed all treatment should be seen by her doctors, what lab tests and imaging studies are recommended, and what advice patients should be given. ASCO first created these guidelines in 1997 and updated them in 1999 and 2006; this is the 2012 update. Here are the relevant links:</span><br />
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<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The abstract of the <a href="http://jco.ascopubs.org/content/early/2012/11/05/JCO.2012.45.9859.abstract" target="_blank">early release article</a> from the <i>Journal of Clinical Oncology</i> published online 11/5/12 (shout out to the 3 Johns Hopkins co-authors, Dr. Antonio Wolff, Dr. Tom Smith, and Elissa Bantug, herself a young breast cancer survivor who coordinates our breast cancer survivorship <a href="http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/breast_cancer_program/survivorship.html" target="_blank">program</a>)</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The <a href="http://jco.ascopubs.org/content/early/2012/11/05/JCO.2012.45.9859.full.pdf+html" target="_blank">full text</a> of the JCO article </span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A <a href="http://www.asco.org/ASCOv2/Department%20Content/Cancer%20Policy%20and%20Clinical%20Affairs/Downloads/Guideline%20Tools%20and%20Resources/Breast%20Surveillance/Breast%20Surveillance%2010.29.12.pdf" target="_blank">summary slide set</a></span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A <a href="http://www.asco.org/ASCOv2/Department%20Content/Cancer%20Policy%20and%20Clinical%20Affairs/Downloads/Guideline%20Tools%20and%20Resources/Breast%20Surveillance/Breast%20Surveillance%20Flow%20Sheet%209.21.12.xls" target="_blank">surveillance flowsheet</a> in Excel format (also available as a <a href="http://www.asco.org/ASCOv2/Department%20Content/Cancer%20Policy%20and%20Clinical%20Affairs/Downloads/Guideline%20Tools%20and%20Resources/Breast%20Surveillance/Breast%20Surveillance%20Flow%20Sheet%209.21.12.pdf" target="_blank">PDF</a>)</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><a href="http://www.cancer.net/publications-and-resources/what-know-ascos-guidelines/what-know-ascos-guideline-follow-care-breast-cancer" target="_blank">Links</a> to Cancer.Net's patient guide on the topic</span></li>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Let me try to summarize the most important recommendations. The key point is that this 2012 guideline is identical to the 2006 version, which is to say that the ASCO panel, after looking at all of the published literature between 2006 and 2012, did not identify any research findings that warranted a change in their recommendations from 2006. The foundation of follow-up for patients with early stage breast cancer treated with curative intent should be periodic clinical evaluations (i.e., doctors' visits) and mammography. The frequency of recommended follow-up visits decreases as time goes on, from every 3-6 months for the first three years, to once or twice a year for years 4-5, and annually thereafter. The follow-up care should be provided by practitioners experienced in the surveillance of breast cancer (i.e., knowledgeable about the manifestations of cancer recurrence and late effects of the treatment) and comfortable with the physical exam of the breasts, especially the irradiated breast. Note that it doesn't say this has to be an oncologist necessarily, although hand-offs between oncologists and PCP's are discussed, and the practitioner is not required to be a physician, as mid-level providers working with physicians are often quite expert in this role. The guideline gives some recommendations about the frequency of mammograms which you can read at the links above. The importance of educating patients in the signs and symptoms of cancer recurrence is mentioned, as is the importance of regular gynecology follow-up.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As was the case for the identical 2006 version, the part that this 2012 guideline addresses that I think will generate the most interest is what is NOT recommended, which is basically all blood tests (including CBCs, chemistry panels, and tumor markers such as CA 27.29) and all imaging except breast imaging. So specifically all chest xrays, bone scans, CT scans, PET scans, and ultrasounds are not advised. To be clear, the recommendation against performing this type of testing applies to the patient that is in surveillance mode, who is coming in for a regular follow-up visit and who by definition does not have any specific symptoms. ASCO is <i>not</i> suggesting that doctors should forgo this type of testing as a way of evaluating a specific concern like a new symptom (say, back pain) or physical finding (such as an enlarged liver detected by the physician). Good medical practice would dictate just the opposite.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This is not a surprise, and the research supporting this has been around since the mid 1990s. And let me say as a breast cancer oncologist, I support this and have generally been practicing this way for many years. Those studies from the past basically showed that an intensive surveillance strategy of regular imaging studies and labs, when compared with a more conservative approach of periodic physical exams and mammograms alone, did not show any real advantages. The vast majority of recurrences were identified not by imaging tests, but by a symptom the woman herself notes or a physical finding the physician identifies on physical exam. Survival rates were the same between the patients followed more aggressively and those followed more conservatively, and quality of life was not any better. Yes, intensive surveillance and testing did identify more recurrences earlier, usually by no more than a few months, but it did not translate into higher cure rates or even fewer complications. Since metastatic breast cancer is incurable, all the early testing did was identify metastases a few months or so before they declared themselves either by a symptom or a physical finding.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">And to take this a step further, this idea of not doing surveillance testing on patients with early stage breast cancer in the follow-up phase made it onto <a href="http://www.asco.org/ASCOv2/Practice+%26+Guidelines/Quality+Care/Access+to+Cancer+Care/Cost+of+Cancer+Care" target="_blank">ASCO's Top Five</a> list for the American Board of Internal Medicine Foundation's <i><a href="http://www.abimfoundation.org/Initiatives/Choosing-Wisely.aspx" target="_blank">Choosing Wisely</a></i> campaign - five commonly used practices that can and should be questioned since they are costly and lack medical justification. I cover this in a <a href="http://rsm2800.blogspot.com/2012/08/choosing-wisely-campaign-what-do.html" target="_blank">blog post</a> from a couple of months ago.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">But if there ever is an issue that I find problematic in my clinical practice, and one that raises delicate issues of patient empowerment and autonomy, physician authority and adherence to evidence-based medicine, and doctor-patient communication, it is this one. This issue about <i>not</i> performing certain tests is one that causes understandable tension with many of my patients, since at face value it seems illogical and inappropriate. Why wouldn't you want to detect cancer earlier? How could it be that would not improve outcome? And even if there was some uncertainty about that, why should ordering a simple blood test be an issue since the harm is perceived as minimal and potential gain great? Let me run through a few aspects of this issue that contribute to making it so challenging:</span></div>
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<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Oncologists used to do this for breast cancer patients</b>. Yes, that is very true. When I was doing my fellowship in the late 80s I think some of the regular testing was starting to wind down, but I do recall that getting annual bone scans and liver ultrasounds - and certainly "routine labs" like chem panels - was accepted without much question.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Oncologists do this these days for patients with other cancers.</b> Yes, very true as well. For example, there is very good evidence that monitoring patients with colon cancer who have had primary surgery +/- chemo with CEA blood tests and periodic liver CT scans, improves outcomes by identifying liver metastases early, thereby permitting potentially </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">curative resection of the liver lesions.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Some oncologists do this these days for breast cancer patients</b>. Also very true. I see a fair number of patients who receive their care outside of Johns Hopkins, and it is not at all rare when I review their records that I can tell their doctors are ordering CA 27.29 blood tests every few months for monitoring. In fact, a rising tumor marker in the absence of any other positive findings is a common reason for referral to an academic medical center like Hopkins. When I try to diplomatically explain that this was a test that we probably wouldn't have ordered here, the patient is often confused and conflicted, particularly since that fact is irrelevant as far as they are concerned if it suggests that there is a potential problem (which I totally get).</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>The downstream consequences of false positives and enhanced anxiety are not trivial</b>. What is not always easy to appreciate is how a relatively lousy screening test like the CA 27.29, with less than optimal specificity and sensitivity, may open up a whole range of problematic issues - over-interpretation of trivial xray findings, misattribution of physical symptoms better explained in another way to "the cancer," and the endless cycle of repeating scan after scan to follow up on an equivocal abnormality. </span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Even though patients may intellectually understand #4, many still want these tests done for whatever assurance they can provide, and they are willing to risk the false positives.</b> Again, I am quite sympathetic to this viewpoint which many of my patients articulate to me. But I see how it can go either way - the test can be "negative" which is reassuring for everyone, including me as the oncologist who usually is the one who ordered it, or it can be abnormal or equivocal, leading to more testing. And when the patient now finds herself on the receiving end of the latter, it's much harder to deal with that scenario than it is in the abstract.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Patients just want some reassurance that they are ok. The doctor asking you questions and doing regular physical exams, in this modern era of sophisticated imaging and labs, isn't very reassuring.</b> At the completion of adjuvant chemo and radiation, virtually every patient asks me, "How do you know it worked?" In other words, how do you know I am ok? How will I be monitored to know that I remain ok? It's so disconcerting when I have to say that we only really know if chemo <i>didn't</i> work, and we have no way of proving that it accomplished what we wanted it to do. It's very understandable that patients want some objective evidence that they are cancer-free. That's why they are naturally inclined to expect that some type of testing - not the word of the oncologist, even when the trust factor is very high - will offer them that reassurance.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>A negative test means that based on the performance characteristics of that test there is no evidence of cancer at that time</b>. So a relatively insensitive test (e.g., a chest xray) offers a small degree of reassurance that everything is ok, at least in the lungs, but it is only as good as its ability to discriminate a lesion large enough for it to detect. So a chest xray is likely to miss a 4 mm lung nodule, something that is much easier to see on a CT scan but at the price of a much higher exposure to radiation. But even a CT or a PET scan or whatever the latest imaging test to come will be has a shelf life - a negative PET scan in January does little to reassure anyone in October.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>It is increasingly being recognized that radiation from diagnostic imaging is not good for you, and it probably <a href="http://www.cancer.net/all-about-cancer/cancernet-feature-articles/cancer-screening-and-prevention/ct-scans-and-cancer-risk" target="_blank">increases your risk of cancer</a> a small amount.</b> While this is true, it does seem a little incongruous when an oncologist uses this line in someone that has just gone through 20 weeks of chemo and 6 weeks of radiation which themselves can, ahem, cause cancer. I'm not trivializing the risk, but I understand some patients find this "justification" for not ordering a screening test a bit of an odd juxtaposition.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>It is possible that a physician ordering a blood test or especially a more expensive study like a PET scan may have a financial stake in the matter, which could theoretically cloud his/her judgment.</b> Doctors who are part owners of facilities that do PET scans or labs that run chemistry panels may benefit financially from these tests, to a greater extent than an employed physician like me, who gets $0 for any test I order. But let me say that having spent the first 17 years of my career in a private practice with an in-office lab, it is hard to believe that even subconsciously that would have influenced my decision to order a chem panel, and of course, if I really followed the guidelines, I would be going <i>against</i> my own financial interest. However, when this potential conflict of interest exists, it does raise the question as to why there are such variances of practice.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Where do cost and the ethical principle of justice fit in here?</b> Talk about a thorny issue! When I advise a patient not to undergo a PET scan for the primary purpose of reassuring them that they are ok post-treatment, I am not doing it primarily to save dollars. In fact, that is the furthest thing from my mind in the exam room. In essentially no cases right now (and this will change with ACO's - accountable care organizations) is an insurance company telling me not to do it. At least if they deny coverage, it is transparent and the patient knows right away. But where do you draw the line? It's incredibly easy for me to order a lab test because a patient or family insists, even if I am not convinced it is medically justified. While I have a responsibility to act in good faith, for a cancer patient I can almost always "justify" a lab test for the payer. But should I? If I order a test on every patient who insists on having it done, costs paid by someone will escalate. And if thousands of my colleagues do this all over the country, it will easily be hundreds of millions of healthcare dollars spent. Should those limited dollars be spent on testing that does not improve patient outcomes, like PET scans that identify an incurable lung metastasis 4 months before it declares itself, even though it would not affect treatment decisions one bit? Or should they be spent on something better, like co-pay assistance so people don't go bankrupt paying for potentially curative treatments like Herceptin?</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>Am I really sure of the data?</b> I started this by saying that the ASCO guidelines represented best practice. But evidence-based medicine is hardly static. It changes all the time. While no study to my knowledge has ever shown that periodic measurement of serum markers like CA 27.29 or the Circulating Tumor Cell assay used in some places affect outcome, I am pretty sure these specific issues have not all been addressed in randomized controlled trials in systematic fashion. I noted that none of the <a href="http://jco.ascopubs.org/content/suppl/2012/11/05/JCO.2012.45.9859.DC1/ASCO_Guidelines_Data_Supplement_JCO.2012.45.9859.pdf" target="_blank">14 manuscripts</a> the ASCO panel looked at to update these guidelines between 2006 and 2012 specifically address these tests as a primary variable. Is it possible that some combination of lab or imaging tests may someday reveal better quality of life or even greater longevity for more heavily screened patients, especially as our treatments improve? Hardly implausible.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><b>And finally, doesn't this focus on guidelines impair the trust between the doctor and patient by making the care less individualized? Doesn't the physician's judgment enter in at some point? Do guidelines always have to be followed?</b> My answers are - yes it certainly can and does; absolutely; and absolutely not. No physician should be worshipping at the altar of "guidelines" without a thoughtful examination of their strengths, their flaws, and the needs of the patient in front of you. Medicine and certainly oncology will never be a cookbook science, and the imprecision and variability of some of these issues is as maddening to doctors and patients alike as it is inevitable.</span></li>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">My bottom line - I think the ASCO guidelines being discussed here are rational, reasonable, solid, and as good a blueprint as we can hope for in 2012 for this specific clinical issue. They are also as flawed and incomplete as virtually everything else in clinical medicine. I have used them as a starting point for discussion and education with my patients. Usually that goes well, but it is a process not without its tensions at times. I have tried not to draw a line in the sand, but I can think of a few occasions where there was an impasse that we could not bridge. There are few absolutes here. It's not always as straightforward as simply doing whatever test or procedure the patient wants. That's not patient-centered care. Just as I've failed if my reasoning is dogmatic and opaque to my patient, I've also failed if I do something that my training and judgment tells me is incorrect or improper. I hope and pray I can continue to grow in wisdom to make the best decisions. I need input not just from expert ASCO panelists that create these guidelines, but from the real people - my own patients - who are living with breast cancer and trying to make some sense of the madness. And if any of you have read this far, I would love to hear your comments on this blog post. Your insights are always welcome and instructive.</span></div>
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Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com5tag:blogger.com,1999:blog-4600323293486553439.post-73741172818166734292012-10-25T23:48:00.000-04:002012-10-25T23:48:25.567-04:00USA Today article on #bcsm weekly tweetchat<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Kudos and thanks to Liz Szabo (@LizSzabo on Twitter) from USA Today for her 10/23/12 <a href="http://www.usatoday.com/story/news/nation/2012/10/23/breast-cancer-group-support/1637633/" target="_blank">article</a> "Breast cancer survivor group is a social movement" about the weekly breast cancer social media (hashtag #bcsm on Twitter) tweetchat and online support group. Co-founded by two breast cancer survivors/bloggers Jody Schoger (@jodyms) and Alicia Staley (@stales) a little over a year ago, the group has blossomed into a vibrant community of support for breast cancer patients and their families, caregivers, friends, and many other interested folks. If you're unfamiliar with the lingo, a tweetchat is a virtual meet-up on Twitter at a specified time, often repeated weekly or at some other interval, around a predetermined hashtag, which is a type of metadata. The conversation is often organized around questions or topics posted by the moderator, although tweetchats are by definition unstructured and free-flowing. <a href="http://chronicle.com/blogs/profhacker/how-and-why-to-participate-in-a-tweetchat/42380" target="_blank">Here's</a> a more detailed explanation. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The USA Today story emphasizes the power of the community that has arisen out of this online gathering. While it seems improbable that meaningful interaction could really occur over the exchange of 140-character tweets, that is exactly what happens, and the online conversation is deeply-nuanced and powerful. I have been honored to be a guest expert on #bcsm, and I frequently join in the conversation, which occurs most Monday evenings at 9:00 pm Eastern time.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I appreciate Liz Szabo allowing me to be quoted for the article and more importantly for publicizing the existence of the group and the good that it is doing. This is another example of how social media provide opportunities for connection and community that transcends geographical, institutional, and socioeconomic boundaries.</span>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com1tag:blogger.com,1999:blog-4600323293486553439.post-38566396647171049872012-10-12T23:14:00.000-04:002012-10-12T23:14:50.338-04:00Help me show a group of physicians the power of social media<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I'm going to be giving Grand Rounds for the Department of Medicine at University of California, Irvine School of Medicine on Tuesday, October 16, 2012 at noon PDT, as I mentioned in an <a href="http://rsm2800.blogspot.com/2012/08/crowdsourcing-title-for-my-grand-rounds.html" target="_blank">earlier blog post</a>. The title of my talk is "Social Media and the Digital Physician - #UCIMedGrandRounds." Since it would probably be a wee bit too challenging to try to livetweet my talk while actually giving my talk (I'm good, but not THAT good), I decided to pre-schedule a series of tweets using HootSuite with the #UCIMedGrandRounds" hashtag, to be posted during the talk, roughly correlated to the topics I am covering at the time. I fully plagiarized this idea from @colleen_young, who pulled this off in spectacular fashion I am told at the 2012 #Med2 conference in Boston - props to you!</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So I am hoping that my Twitter community will join in the fun next Tuesday 10/16 at noon Pacific time. Please follow the #UCIMedGrandRounds hashtag that day, and "wave" to the audience by introducing yourselves to them via Twitter. I'll send out a few reminders at the start of the talk. While I don't know how social media savvy my physician audience will be, since it's an academic medical center I suspect that penetration of Twitter may be fairly minimal. I am hoping we can generate a little buzz by showing them the power of connection and interaction that we find in social media. Maybe we will get a few converts! Thanks.</span>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com1tag:blogger.com,1999:blog-4600323293486553439.post-54581725809027152192012-10-08T22:48:00.000-04:002013-09-24T18:26:25.199-04:00Breast cancer links page<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This blog post will be a work in progress, and I'll probably keep updating it. I was motivated to do this to try to put together a list of online references for my own breast cancer patients. I do regret I haven't really done this in quite a few years. I frequently refer patients to the Hopkins Breast Center web site or Cancer.Net, but obviously there are many other choices. I will generally only list institutional, non-profit, or governmental sites, and usually only those with which I am reasonably familiar. While there is much good content on commercial sites and social media sites, it is not my intent to focus on those here.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Curation of online content - in my humble opinion - is an important role for the 21st century physician. In a perfect world, I would spend part of every visit, or at least every new patient visit, pointing my patients to online references that complement what we covered during the visit and help them further understand their diagnosis, prognosis, and treatment options. The truth is, it is very challenging to find the time to do that. That is not likely to change until we have our EHR fully implemented </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">at Hopkins </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">next spring, with the patient portal in place and automated after-visit summary generated with each visit. I am optimistic that the technology will facilitate this type of educational offering.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I welcome recommendations of other web sites that my readers have found helpful. As mentioned, I intend to focus largely on reputable institutional sites, but I will read every suggestion. Please leave me a comment below or suggest a site to me on Twitter (@rsm2800).</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">And now the obligatory disclaimer stuff...</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The links that I list below are from organizations that are reputable and have a history of producing high quality , credible patient-education information. If I approve a blog comment mentioning other sites/resources, I am sharing it but not necessarily endorsing it. Obviously, all of these sites are from third parties, and I do not control their content. And as I say in the disclaimer on my home page, this blog is not medical advice. Always consult your physician for specific medical questions about your condition.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">General Breast Cancer Information</span></h2>
<a href="http://www.cancer.net/cancer-types/breast-cancer" target="_blank">Cancer.Net - Cancer Types>>Breast Cancer</a><br />
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<a href="http://www.nccn.org/patients/guidelines/breast/index.html" target="_blank">NCCN Guidelines for Patients - Breast Cancer</a><br />
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<a href="http://www.cancer.gov/cancertopics/types/breast" target="_blank">National Cancer Institute - Breast Cancer Home Page</a><br />
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<a href="http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/index" target="_blank">American Cancer Society - Breast Cancer Overview</a><br />
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<a href="http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/breast_cancer_program/index.html" target="_blank">Johns Hopkins Kimmel Cancer Center - Breast Cancer Program Home Page</a><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Drug Information</span></h2>
<a href="http://www.bccancer.bc.ca/HPI/DrugDatabase/DrugIndexPt/default.htm" target="_blank">Drug Index - British Columbia Cancer Agency</a><br />
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<a href="http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/index" target="_blank">American Cancer Society - Guide to Cancer Drugs</a><br />
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<a href="http://www.cancer.gov/cancertopics/druginfo/alphalist" target="_blank">National Cancer Institute - Cancer Drug Information</a><br />
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<a href="http://www.webmd.com/drugs/index-drugs.aspx" target="_blank">WebMD - Drug and Medication List</a><br />
<br />
<h2>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Clinical Trials</span></h2>
<a href="http://www.cancer.gov/clinicaltrials/search" target="_blank">National Cancer Institute - Clinical Trials Search</a><br />
<br />
<a href="http://clinicaltrials.gov/">ClinicalTrials.gov</a><br />
<br />
<a href="http://www.cancer.org/treatment/treatmentsandsideeffects/clinicaltrials/app/clinical-trials-matching-service" target="_blank">American Cancer Society Clinical Trials Matching Service</a><br />
<br />
<a href="http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/clinical_trials.html" target="_blank">Johns Hopkins Kimmel Cancer Center Breast Cancer Program - Clinical Trials Page</a><br />
<br />
<h2>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Breast Cancer/General Oncology News</span></h2>
<a href="http://www.breastcancer.org/research-news" target="_blank">Breastcancer.org Research News</a><br />
<br />
<a href="http://www.medpagetoday.com/HematologyOncology" target="_blank">MedPage Today - Oncology/Hematology Information Center</a><br />
<br />
<a href="http://www.oncolink.org/news/" target="_blank">Oncolink - Cancer News</a><br />
<br />
<h2>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Coping/Supportive Care</span></h2>
<a href="http://www.cancer.gov/cancertopics/coping" target="_blank">National Cancer Institute - Coping with Cancer: Supportive and Palliative Care</a><br />
<br />
<a href="http://www.cancer.net/coping" target="_blank">Cancer.Net - Coping</a><br />
<br />
<a href="http://www.cancercare.org/patients_and_survivors" target="_blank">Cancercare.org - For Patients and Survivors</a><br />
<br />
<a href="http://www.oncolink.org/coping" target="_blank">Oncolink - Cancer Support and Coping with Cancer</a><br />
<br />
<h2>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Survivorship</span></h2>
<a href="http://www.cancer.net/survivorship" target="_blank">Cancer.Net - Survivorship Page</a><br />
<br />
<a href="http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/Cancer-Transitions" target="_blank">LIVESTRONG - Cancer Transitions</a><br />
<br />
<a href="http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/survivor_care" target="_blank">Johns Hopkins Kimmel Cancer Center - Breast Cancer Survivorship Care</a>Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com1tag:blogger.com,1999:blog-4600323293486553439.post-91617910790353928762012-09-30T02:24:00.000-04:002012-09-30T09:57:48.824-04:00Whose opinion matters in medical decision-making?<br />
<blockquote class="tr_bq">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>Caring for patients involves the formation of multiple opinions. Traditionally, the patient's physician generates the first opinion, with other clinicians offering second opinions. However, an opinion at least as important must also be recognized in this traditional rubric—that of the patient and family members. Just as the conscientious health care practitioner is constantly reformulating his or her opinion based on many factors, so too is the patient.</b></span></blockquote>
<blockquote class="tr_bq">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> --<i>Recognizing an Opinion: Findings From the IOM Evidence Communication Innovation Collaborative</i> <a href="http://jama.jamanetwork.com/article.aspx?articleid=1363268" target="_blank">JAMA. 2012;():1-2. doi:10.1001/jama.2012.13369</a></span></blockquote>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">How important is the opinion of the patient and/or family in medical decision-making? And how can these opinions and preferences be better integrated into clinical care? A <a href="http://www.iom.edu/Global/Perspectives/2012/Evidence.aspx" target="_blank">discussion paper</a> published this month from the Institute of Medicine (IOM) entitled <i>Communicating with Patients on Health Care Evidence</i> attempts to tackle these questions and other issues related to improving the quality of medical decisions. The impressive list of authors, who are all thought leaders in areas as diverse as academic medicine, public policy, and consumer empowerment, were participants in the "Evidence Communication Innovation Collaborative of the IOM Roundtable on Value & Science-Driven Health Care." (Now, there's a title.) Props to the IOM for releasing the full text of the paper as a freely available <a href="http://www.iom.edu/~/media/Files/Perspectives-Files/2012/Discussion-Papers/VSRT-Evidence.pdf" target="_blank">PDF</a> and to JAMA for posting the <a href="http://jama.jamanetwork.com/article.aspx?articleid=1363268" target="_blank">Viewpoint summary article</a> from Novelli et al also with free access to full text. </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A few key takeaways from the report:</span><br />
<br />
<ul>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">8 in 10 people want their provider to listen to them.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">8 in 10 people want to hear the full truth about their diagnosis.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">7 in 10 people want to understand the risks of treatments.</span></li>
</ul>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">BUT:</span></div>
<div>
<ul>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">8 in 10 people want their health care provider to listen to them, but just 6 in 10 say it actually happens.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Less than half of people say their provider asks about their goals and concerns for their health and health care.</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">9 in 10 people want their providers to work together as a team, but just 4 in 10 say it actually happens.</span></li>
</ul>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The report defines the three components of informed medical decisions as medical evidence, clinician expertise, and the patient's goals and concerns. In Figure 4, survey data are shown demonstrating that patients place nearly equal weight on each of these, with a slight edge to medical evidence as the leading component. Interestingly, women were somewhat more likely than men to say that their personal goals and concerns were "very important" (64% vs. 50%).</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In addition, the following language was deemed in patient interviews and focus groups to "resonate best" in regards to medical evidence:</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div>
<blockquote class="tr_bq">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b>Making sure you get the best possible care starts with you and your doctor making the best decision for you. Your doctor can help you understand what types of care work best for your condition, based on medical evidence. Because there are always new treatments, doctors use this evidence to keep up with which work best. Your doctor's experience helps him or her evaluate and apply the evidence to your situation. The doctor also needs to listen to you so he or she understands your values, preferences, and goals. This is important because every patient is different, and when there are options, it is important for the doctor to know what is important to you.</b></span></blockquote>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In the conclusion, the authors call for the following actions:</span></div>
<div>
<ol>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Cultural changes - providers should recognize existing gaps and adopt decision aids when available and other tools, including mobile technologies, to facilitate the presentation of knowledge and care coordination</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Incentive alignment and infrastructure support - patient-centered medical homes and EHR's that promote "meaningful choice" are singled out</span></li>
<li><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Quality standards and accountability - including a suggestion for professional licensing/accreditation bodies to incorporate criteria encompassing patient-centered medical decision-making</span></li>
</ol>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So is there anything new here? And what are the lessons for oncologists in particular? As a busy clinician in a breast cancer practice at an academic medical center who every day tries to guide patients through difficult decisions - whether or not to receive adjuvant chemotherapy for an ER positive cancer, whether to enter a Phase I trial when conventional options are exhausted for refractory disease, whether to be hospitalized for IV hydration or pursue a purely palliative approach at home with hospice - my first reaction, and admittedly not my best reaction, is to go into Defensive Mode. <i>Of course</i>, I always consider patient preferences. <i>Of course</i>, I always give people the full truth about diagnosis and prognosis. <i>Of course</i>, I explain risks adequately. And so on. But based on this paper and numerous other examples, it doesn't take much self-reflection to acknowledge that my colleagues and I probably aren't hitting the mark nearly as often as we would like to give ourselves credit. The one concept from this paper that resonated the most with me was the emphasis on the idea that patients want to know all of their options for a given decision, not just the ones that I as the provider favor. Using the example of trying to decide whether to administer adjuvant chemotherapy for an ER positive, node negative breast cancer (let's make it more complicated and say the Recurrence Score is 22, and there's no trial avaiable), what options might I present to a patient, who is otherwise fit for chemotherapy and willing to receive it? Well of course I tell them that tamoxifen or an AI alone may very well be sufficient treatment. And then after trying to put the use of adjuvant chemotherapy into an historical perspective, I discuss with them the option of a standard regimen like TC x 4. I do usually tell them that no systemic treatment is also an option, although not one I advise. And within the limits of our knowledge and predictive ability, I try to estimate the risk of recurrence and the potential benefit of the intervention in numerical terms, trying to emphasize absolute benefits instead of relative. (I confess, I have been known to start the conversation by saying that an AI will "cut the risk of recurrence by half." I'm not immune to sound bites.) But along this vein, do I give them the option of TAC x 6, even if in my opinion the potential benefit is not high enough to justify the greater toxicity of a 3rd generation regimen? Not often. Do I mention regimens that I just don't use, like CMF or M->F, knowing that there are a few places that still do use them, and there is some evidence to support their use? No, I don't. Or do I regularly discuss a possible role for adjuvant bisphosphonates, recognizing they are not FDA approved for this indication, and I am personally not convinced that we have enough data, even in postmenopausal women, to demonstrate a net benefit? No, not usually, unless asked.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Why don't I do these things? I suppose I partially justify it by saying that I simply can't recommend and discuss as a viable option a treatment that I don't feel passes my own evidence test - not necessarily my own experience. And, being realistic here, time constraints do play a role. In a perfect world, a new consultation would last 2 hours, 3 hours, or however long was needed to convey all of this information, or would extend over multiple visits. But if I did that with everyone, my new patient slots would dry up, and it would take weeks and weeks to get an appointment with me, which means the next patient needing consultation would be kept waiting in frustration. Furthermore, no matter how skillful a presentation of options is in a clinical encounter, a recitation of treatment choices rendered without context or hierarchy is frequently meaningless and confusing to even highly sophisticated patients. So does this mea culpa make me a non-patient-centered oncologist, and guilty of the failings described in the IOM report? Like most of us I would hope, I have an infinite capacity for self-criticism and second guessing, so I suppose the answer is that, yes, at times I indeed need to be more mindful of the alternative approaches and considerations illustrated in this piece. But I offer this reflection to illustrate how complex and nuanced the physician perspective is in the spectrum of informed decision-making. </span></div>
</div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Lest my comments be interpreted as critical of IOM or suggesting this discussion paper is some ivory tower assessment devoid of the realities of practice in the modern era, far from it. I salute the IOM for focusing on this issue with the right combination of balanced analysis and practical suggestions. I will try to reflect on the recommendations they put forth in all of my patient encounters this week and put the principles of patient engagement front and center. I challenge all of my clinician colleagues reading this blog to do the same. And to our patients in the difficult situation of being on the receiving end of these discussions, I salute you and recognize you are the ones thrust into this situation unwillingly and often with little time to prepare for such weighty decision-making. Help us your caregivers help you. Tell us what you need and when we have failed to include you.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
</span></div>
Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com1tag:blogger.com,1999:blog-4600323293486553439.post-59160999040867679802012-09-26T00:25:00.001-04:002012-09-26T00:25:36.358-04:00I'm on BlogTalkRadio 9/26/12 5PM EDT with Dr. Richard JustI'm honored to be asked to appear on Internet radio with San Diego area oncologist and social media triple threat Dr. Richard Just, Wednesday 9/26/12 5:00 pm EDT for a 30 minute chat ranging from social media for oncologists to breast cancer. You can listen in live <a href="http://www.blogtalkradio.com/justoncology/2012/09/26/this-week-in-oncology-with-robert-s-miller-md" target="_blank">here</a>. And be sure to check out Dr. Just's lively Twitter stream with the handle <a href="https://twitter.com/chemosabe1" target="_blank">@chemosabe1</a> (wish I'd thought of that one) and blog <a href="http://JustOncology.com/">JustOncology.com</a>.Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0tag:blogger.com,1999:blog-4600323293486553439.post-55647848483638356442012-09-22T18:45:00.002-04:002012-09-22T18:47:36.081-04:00The Virtual Choir<blockquote class="tr_bq">
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><i><b>[This weekend, while trying to work on my Department of Medicine Ground Rounds talk at UC Irvine for next month ("<a href="http://rsm2800.blogspot.com/2012/08/crowdsourcing-title-for-my-grand-rounds.html" target="_blank">#UCIMedGrandRounds – Social Media and the Digital Physician</a><span class="Apple-style-span" style="font-size: 15px;">"),</span> I've been listening to some soothing Eric Whitacre pieces with hopes that it would inspire me to get most of my slides done. Not sure that is working yet, but it inspired me to share a blog I did for <a href="http://connection.asco.org/Commentary/Article/id/3184/The-Virtual-Choir.aspx" target="_blank">ASCO Connection</a> earlier this year about artistic vision, collaboration, and illness.]</b></i></span></blockquote>
<br />
<br />
In a previous life I used to be a church musician. I started piano in the 1st grade, and since I attended a pretty traditional parochial elementary school, it was natural to gravitate in this direction. Over the years I’ve been involved in church and school choirs as a pianist, organist, singer, arranger, composer, and conductor, and I did this in high school, college, med school, and beyond, as recently as about four years ago. Lest you confuse me with someone with real talent, let me say I was never classically trained and I would probably embarrass myself pretty badly today if I tried to perform anything complicated. But I’ve long maintained my love for classical choral music, both sacred and secular, and I’ve always greatly enjoyed listening to choral works on my iPod.<br />
<br />
A few years ago, while browsing the iTunes store, I discovered a composer and conductor named Eric Whitacre, who has had a somewhat meteoric rise to fame and international acclaim in this genre. He has an interesting personal story. He grew up in rural Nevada in the ‘70s-‘80s and attended UNLV, not exactly known as a powerhouse for classical music. As he tells it, even though he could sing, he couldn’t read music when he started college. On a whim, he joined a college choir and almost immediately had a transformative experience with the music and the blending of voices that led to a BA in music, then a Masters at the Juilliard School, and over the next 20 years lavish praise, fame, and multiple awards as a prolific composer and conductor of choral and symphonic music. I’m sure it doesn’t hurt that, now at 42, he is described as “boyishly handsome” and is an articulate and passionate speaker. His music is known for its dense harmonies, dissonance, and unusual rhythms. I find it very beautiful and challenging. But what I really found fascinating was an experiment he started in 2009 with something called the Virtual Choir. It’s probably easier to watch this <a href="http://www.ted.com/talks/eric_whitacre_a_virtual_choir_2_000_voices_strong.html" target="_blank">11-minute “TED Talks” video</a>, which went insanely viral last year, than read my summary, but I will try to be brief. It seems that a young girl sent him a fan video on YouTube of her singing the soprano part to one of his pieces called <i>Sleep</i>. He was struck by the tribute, and he recognized the purity and sweetness of her artistry. He then had an inspiration about how to harness the creativity of multiple other would-be performers who might be singing to their video cameras and uploading to YouTube, hoping to create something beautiful that would make them famous. So what he did was to put out a call, using social media, encouraging singers all over the world to video themselves singing one of the parts of his work <i>Lux Arumque</i>. He ended up receiving almost 200 hundred videos from a dozen countries. Then with a collaborator, he assembled his Virtual Choir into a <a href="http://www.youtube.com/watch?v=D7o7BrlbaDs" target="_blank">single video</a>, with himself conducting these virtual voices, and the results are, well, astounding. He went on to produce <a href="http://www.youtube.com/watch?v=6WhWDCw3Mng" target="_blank">Virtual Choir 2.0</a>, with over 2,000 separate singers from dozens of countries, and then just this week released the video of <a href="http://www.youtube.com/watch?v=V3rRaL-Czxw" target="_blank">Virtual Choir 3.0</a>, with 3,746 singers from 73 countries performing his work <i>Water Night</i>. I know you are busy people, but take 30 minutes out of your evening to view all three of these videos. Even if you are not a fanboy like me, the artistry is remarkable, and the music sublime and exhilarating.<br />
<br />
So what in the world does this have to do with medicine, oncology, or <i>ASCO Connection</i>? As I followed this story, it struck me how there are some parallels with health care and the experience of illness. In the Virtual Choirs, Whitacre and thousands of others with the common interest of choral music were coming together to share an artistic vision and create a larger work. While each singer was recording an individual vocal track in the privacy of his or her own bedroom, there was an undeniable social connection. The need to connect with other people who share our interests and experiences is one of the strongest forces of our humanity. And I see this every day in the practice of oncology. Yes, this is the era of personalized medicine, but so many of our patients have a fundamental need to connect with other patients and families that are going through the same thing they are, a need that we as health professionals can’t possibly fill. People need to learn from each other in a social and collaborative fashion, and the wonders of the Internet and the explosion of so many social media channels today have enabled this to a degree never before possible. <a href="http://www.pewinternet.org/Reports/2010/30--Cancer-20/Report/Section-3.aspx" target="_blank">Much research</a> has confirmed this, and while patients will usually come to their physicians for the authoritative voice we have, they still need to process this knowledge through the filter of other people. As oncologists, we would be foolish to deny this reality, and I would maintain that a much greater good could come from our efforts to facilitate it, if not harness it for a larger purpose.<br />
<br />
But for us as physicians, it’s more than simply allowing patients to share their war stories and their tips on dealing with treatment, with some type of blind but vaguely disapproving eye. I think this social urge is a greatly underutilized resource for discovery. Think of the whole concept of patient-reported outcomes. As physicians, we know or should know that we generally <a href="http://jco.ascopubs.org/content/29/8/954.full" target="_blank">do a lousy job</a> in assessing the patient experience of illness. In our field this very pointedly is the patient experience of treatment toxicity, fear of the disease process, and loss of control. The data are so much better when we let patients tell their stories directly. And think how easy it would be to enable this with all of the simple and widely accessible technologies available today, like YouTube and cell phone texting. As investigators, we could create our own Virtual Choir of our patients, individually and collectively, contributing content that we can amass and analyze for trends and causality. Think how simply elegant an experimental design could be. Say we wanted to know the temporal trend of patient-rated bone pain following a Neulasta injection. Sure, we think we know this from existing clinical trial data, but mostly it’s what we’ve asked our patients to tell us. What if we told every breast cancer patient getting dose-dense AC starting on day 2 of each cycle to text an integer value from 1-10 corresponding to their level of bone pain to 11435? And what if the data were displayed real time on a website that refreshed every ten seconds with all other participants’ results, so that people feeling lousy in their homes that night could see other peoples' scores and know they weren’t alone? I would predict that this collaborative content creation would enhance study compliance like no $25 Starbucks gift card ever could. And if instead of a Virtual Choir of 2,000 or 4,000, we had tens of thousands of patients doing the same thing? Talk about <a href="http://www.whitehouse.gov/sites/default/files/microsites/ostp/big_data_press_release_final_2.pdf" target="_blank">Big Data</a>! Yes, our current broken clinical trial system can’t support something like this. But I believe we can figure out a better way to harness the power of social media, collaborative data creation, and the patient voice to overcome these barriers and transcend our current maddening limitations.<br />
<br />
Whitacre had a vision of musical creation that transcended a single concert hall or venue, and the results were breathtaking. In our field, I believe we are no less creative and passionate. What are the provocative questions we can answer by being as visionary and bold?<br />
<br />
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<style>
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table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
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mso-style-qformat:yes;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
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mso-bidi-theme-font:minor-bidi;}
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Robert S. Miller, MDhttp://www.blogger.com/profile/03156523340638407529noreply@blogger.com0