San Antonio Breast Cancer Symposium 2013

This week I was happy to be able to attend my first-ever San Antonio Breast Cancer Symposium, 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.

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 here. 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.

There was plenty of media coverage from mainstream news sources, as well as specialty media like MedPageToday and the ASCO Post. Don't miss the press releases from the Symposium web site or these helpful audio interviews with some of the speakers.

And finally, I am grateful to Dr. Deanna Attai, breast surgeon and #BCSM Tweetchat co-moderator, for asking Dr. Julie Gralow and me to write blog posts for the BCSM Community site about some of the research findings presented. Rather than wasting electrons by duplicating my post here, I am linking to it here on the BCSM Community blog page. Dr. Gralow's post can be found here. Feel free to comment below on my post or anything else you wanted to share about the Symposium and findings.

My 12/4/13 talk at Johns Hopkins - "Social Media for Professional Education and Patient Engagement"

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 Johns 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.

I created a Storify with all of the tweets from today associated with the #cohsrig13 hashtag here. 

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.

Engage With Grace 2013

Last year for Thanksgiving, 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 Engage With Grace and the One Slide Project, and consider having this conversation with your family as you finish your Thanksgiving feast. 

Engage With Grace

Answer and share the 5 questions here.

Podcast: Practical Guidance in the Use of Social Media in Oncology

This week we posted a podcast for ASCO's Journal of Oncology Practice on the topic of social media in oncology practice. This was based on an article 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 (@drdonsdizon), a medical oncologist at the Massachusetts General Hospital Cancer Center specializing in women's cancers and female sexual health, Dr. Mike Thompson (@mtmdphd), 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.

You can listen to the podcast here on the JOP website, or this link will bring you to the iTunes store (you can also just search "Journal of Oncology Practice" on iTunes and find it that way). Also, please take a moment to read the full JOP article.

The conversation was wide ranging and covered many important points, including:

• 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)
• What are the special considerations for social media in the field of oncology in particular, compared with other medical specialties
• What issues are raised when patients try to engage with their physicians using social media
• 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
• What role social media plays as a member benefit and a communication/engagement tool for a professional society like ASCO
• 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

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.

An Epic narrative

My professional life at Johns Hopkins has been largely consumed in recent months by preparations for the implementation of the Epic electronic health record (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.

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).

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). 

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. 

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 (here's 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 mandatory 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 historically 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 Triple Aim: 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.

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.

Free Online Nutrition Webinar for Cancer Patients from Johns Hopkins

Johns Hopkins nutritionist Mary-Eve Brown, RD, will host a nutrition webinar "What’s Food Got To Do With It: Eating Healthy During & After Cancer Treatment" Tuesday March 12, 2013 from 7:00-8:00 pm EDT. This presentation is open to all cancer patients, 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 here.  

4 Common Myths About Cancer Doctors

I read this simple but effective blog post today from MD Anderson's very nice Cancerwise 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:

1. "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.
2. "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.
3. "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.
4. "We don't like you to get a second opinion." Never a problem.

Thanks to Dr. Jasani and the MD Anderson folks for sharing.

ASCO & the Conquer Cancer Foundation Enable Free Full Text for ASCO Journals

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 here 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 Journal of Clinical Oncology (JCO) and Journal of Oncology Practice (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.)

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 PubMed or their individual web sites above.

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.

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.

Spread the word!

Social tool or social isolation?

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 Social Media and the Digital Physician 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 Taking Twitter to the Next Level: A Hands-on Workshop. (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 Top Twitter Myths and Tips. That led to a little discussion among our group about the (perceived) time commitment required for social media. Here's my reply:

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)…

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.

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.

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.

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:  http://futuredocsblog.com/top-twitter-myths-tips. Or follow the blog of someone like Dr. Bryan Vartabedian at www.33charts.com for a real visionary. Or, ahem, follow me on Twitter (@rsm2800) or read my blog.

[puts soapbox away and resumes normal life]

So as I was thinking about social media communities and health care professional engagement, I came across this provocative opinion piece in this morning's Washington Post, "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. 

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 Twitter hashtag #hcsm) 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.

Unanswered questions

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:

Which ER positive, node negative patients really need chemo in addition to hormonal therapy?  

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? 

What's the final word on CYP2D6 and tamoxifen? 

How do I help patients lose the weight they gained during adjuvant chemo or hormonal therapy? 

Who should get an MRI or US in addition to mammogram?

What's the best sequence of hormonal therapy for postmenopausal women with metastatic breast cancer?

Is there harm in delaying the start of adjuvant chemotherapy following definitive local therapy more than 4-6 weeks?

Should you give adjuvant trastuzumab to women with HER2 positive cancers less than 1 cm?

Is more than five years of an aromatase inhibitor better than 5 years in the adjuvant setting? 

Is a negative margin following lumpectomy defined as 2 mm, 1 mm, or just no tumor at ink?

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?

What's the role for local therapy of the primary tumor in the asymptomatic patient with metastatic disease?

What's the best systemic management for metaplastic carcinoma? 

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 some 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 good information for that one), we can be more selective about which patients we expose to drugs like taxanes.

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. 

Health IT predictions for 2013

If you don't read the web site of iHealthBeat or follow their Twitter feed at @iHealthBeat you really should. It's a daily news digest from the California HealthCare Foundation covering the impact of technology on healthcare. Their report from yesterday 1/3/13 is a really interesting read - "11 Experts on Health IT Progress, Frustrations and Hopes for 2013." 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:

1. What was the most significant health IT development over the past year?
2. What was the biggest disappointment or missed opportunity in the health IT space in 2012?
3. 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?

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).

A few themes emerge:

• The importance of patient empowerment and engagement, particularly as incorporated into Meaningful Use Stage 2 requirements
• The proliferation of and opportunities presented by mobile health technology
• Controversies over the delayed implementation of ICD-10
• Issues of privacy and security
• The uncertain impact of Accountable Care Organizations
• The ability of EHR's to facilitate potentially fraudulent upcoding for services (comments on both sides of this issue)

There seems little doubt that in 2013 technology will continue to be a key theme of healthcare delivery and policymaking at every level.