Sunday, January 20, 2013

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.

Thursday, January 10, 2013

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. 

Friday, January 4, 2013

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.