This past weekend, along with over 400 other health care providers, social scientists, technology entrepreneurs, and “e-patients,” I attended the fascinating and provocative Medicine 2.0 conference at Stanford, or more accurately the “Fourth World Congress on Social Media and Web 2.0 in Health, Medicine and Biomedical Research.” The Medicine 2.0 series is the brainchild of Gunther Eysenbach, MD, MPH, professor of health policy at University of Toronto and Senior Scientist at the Centre for Global eHealth Innovation in Toronto. He is a prominent researcher in the field of eHealth and the effects of the Internet on medicine, and he is founder and editor-in-chief of the influential (and open access) Journal of Medical Internet Research. This was the first Medicine 2.0 held on U.S. soil, and it was ably chaired by the enthusiastic and passionate Dr. Larry Chu, an anesthesiologist at Stanford who also has an interest in educational informatics and epidemiology. The venue was the beautiful, state-of-the-art Stanford medical education building, the Li Ka Shing Center for Learning and Knowledge. As I walked around the medical campus enjoying all of the gleaming new buildings and delightful 80-degree temps, I seemed to have trouble recalling much about the locale from my days there as an oncology fellow in 1989-1991. (Perhaps the fact that I was a first year fellow and had a newborn at the time had something to do with my recollections being mostly of inside corridors).

This meeting definitely had an “unconference” feel to it, with a paucity of bulleted PowerPoint slides and even fewer neckties, not to mention quite a few spiky-haired twenty-something Silicon Valley types (I think they call them Millenials) in attendance. Not exactly the same ambience as the ASCO Annual Meeting. The attendees encompassed a wide diversity of professional backgrounds and training, although most had a particular interest in social media and Web 2.0 technology. It was great to see the broad international audience, with Canada, the UK, Spain, Israel, New Zealand, and Australia, among others, all well represented, hardly surprising since Medicine 2.0 2008 and 2009 was held in Toronto and 2010 in Maastricht. The conference badges themselves were works of art, featuring our pictures, Twitter handles, and personal QR codes. The idea was that you could take a picture of the QR code with your smartphone (using an app like Red Laser), and it would open up to your individual profile page on the conference website, perfect for networking. I kid you not, here is a YouTube video about the badges.

This was a three-day event, and the full program pdf is here. Day 1 was the “Stanford Summit” and was organized like a series of TED talks, covering such topics as Communities of Practice and Participatory Medicine, Facebook for Scientists, Culture of Science on the Internet, and the Science of Sharing, and Innovations in Medical Education for Tomorrow’s Learners. Again, the feel was very un-conference-like, with a white leather couch on the stage and each speaker illuminated center stage while using a hands-free mic. Not the construct of most of the meetings I attend. These talks were interspersed with live demos of emerging technologies, such as iPad apps for patient education and a slew of different of devices like smart glucometers and high-tech pedometers that connect to your iPhone via Bluetooth. Days 2 and 3 had a more traditional format with abstract presentations and some panel discussions. Of course, social media was in use everywhere, with Twitter being the most obvious example. Using the conference “hashtag” of #med2, over the three days of the conference, 680 users sent 5802 tweets – not bad considering there were fewer than 500 registrants. Contrast that with our analysis from the 2010 ASCO Annual Meeting (4465 tweets/684 users/32700 registrants) - #fail.

Some things I found interesting

• A group of e-patients (here’s one definition) were prominent participants at the conference, and the organizers even found funding for 23 e-patient scholarships to offset the somewhat character-building costs of registration and travel. One highlight for me was the Stanford ePatient Forum, hosted by my Twitter pal from Richmond Nick Dawson (@nickdawson). About 10 patients, including another Twitter friend, the wonderful and compassionate Jody Schoger (@jodyms), bravely shared their personal health stories and how they became more empowered in their health care decision-making. Sadly, it seems that for many of them, their engagement was prompted by negative experiences with physicians and the health care system. I wish we had more time for interaction, as it would have been great to dialogue with them from my perspective as an oncologist.

• Abstract 674 by Lisa Gualtieri and Pamela Ressler from Tufts was on the subject of patient blogs and the experience of illness. They reported on a convenience sample of 41 self-selected respondents (with plans to look at a much larger cohort of 500 patient bloggers in the next iteration) and found, not surprisingly, that patient bloggers often had a high level of comorbidities and serious illness. Most were white, female, and highly educated. While many started their blogs for the therapeutic value of telling the story of their illness – and it seemed not to matter if they received any blog comments – as time went on they found even greater meaning in the comfort and solace their writing had for others with their condition. Not surprisingly, only a small percentage openly shared their blogs with their providers.

• There was a lot of focus on patient self-management, particularly for kids and teens with chronic diseases like asthma and diabetes. For example, one group of investigators (Abstract 681) developed a tool called PLAY as a PC and mobile app. It combined a portable spirometer with social networking/game play functionality, which sent spirometry results wirelessly to providers and returned personalized health messages via text. Another very cool example was an iPhone app for diabetes self-management called Bant, developed by the creative Centre for Global eHealth Innovation in Toronto. The app connected wirelessly with a glucometer and allowed users not only to track their blood sugars but also to share results with other patients. A new term I learned is “gamification,” which is using gaming techniques typically involving rewards (e.g., iTunes gift certificates) for accomplishing health-related goals like increasing the number of daily fingersticks, thereby driving patient behavior. Other examples are smoking cessation apps that reward users for milestones.

• Lee Aase, director of the Mayo Clinic Center for Social Media,  and certainly a pioneer in this area, gave a slideshow showing how Mayo went from a traditional model of having all content on a patient information web site to a fully integrated suite of social media applications including blogs, podcasts, Facebook, YouTube videos, and a Twitter feed. And the cost for all of these channels was essentially zero since most are free to use. Compared to the cost of traditional marketing, that is quite a return on investment. But more importantly he showed how Mayo was able to leverage things like their YouTube videos of faculty speaking about a specific tumor type or blood condition to attract out-of-state patients to come to the institution for care.

• It was good to see the NIH and NCI represented there. Lakshmi Grama, Senior Digital Content Strategist at NCI, showed how NCI’s patient education efforts evolved from the 1-800-4-CANCER number to the cancer.gov web site and now into the Facebook era (Abstract 747). Did you realize NCI had a Facebook page? I hadn’t considered all of the challenges they face in maintaining it, such as dealing with privacy issues and learning how to handle patients who write in wanting to share miracle cures. Another recurring question type relates to funding, with some patients or families posting to complain that NCI doesn’t fund their particular cancer type adequately. Based on the examples shown, they do a very nice job crafting diplomatic and even-handed replies on behalf of NCI.

• Stanford faculty anchored the keynote speeches each day, with appearances by Abraham Verghese, Phil Pizzo, BJ Fogg, and Jennifer Aaker, a social psychologist and professor in the Graduate School of Business. She gave a surprisingly moving talk about using social media to accomplish difficult goals – in one case registering 20,000 South Asians for the NMDP to support two Indian students with AML – using creative engagement and storytelling.

• Susannah Fox, of the Pew Internet and American Life Project, gave the closing keynote about “peer to peer healthcare,” something truly enabled by Internet technology. Under the best scenario, it can complement, not replace, care delivered by providers, while enhancing patient satisfaction and, hopefully, improve health outcomes. One piece of advice she gave that did resonate with me – “Optimize for the small screen.” In other words, with a majority of Americans accessing health information via smartphones and tablets rather than desktop machines, a good reminder for the creators of consumer health content is to slim down the graphics and page load times. I’m proud that ASCO is doing their part, with the Cancer.Net mobile app for the iPhone as one example.

• Two abstracts covered physician attitudes toward social media. In Abstract 567, Pat Rich of the Canadian Medical Association reported on a survey of Canadian physicians, showing that few used social media for professional purposes (1% for Facebook, 11% for Twitter), while 80% expressed concerns about professional and legal risks. In Abstract 764 (Disclosure: I am a co-author), a group led by Brian McGowan, Phd, from Pfizer (@cmeadvocate on Twitter), reported on the “meaningful use” of social media by physicians for their own professional education and knowledge sharing (as opposed to use for patient care or public health messaging). An email survey of 186 U.S. oncologists and 299 U.S. primary care physicians was conducted to assess attitudes, current usage, and intentions to use. As in Canada, social media use is pretty low, and there are adamant non-adopters (e.g., 33% said they would never use Twitter). Compared to PCP’s, oncologists were generally more skeptical about social media use, preferring more traditional social media tools like podcasts (Neil Love’s influence?), whereas PCP’s were somewhat more likely to use Facebook or blogs. Both type of physicians definitely preferred email and restricted online communities like Sermo. Part of the reason for low usage likely relates to the fact that social learning is just not the way most physicians were taught throughout our training, where knowledge traditionally is something created by credible authorities and organized hierarchically, not something where the source credibility is derived from the “messenger,” e.g., whom you follow on Twitter. It will be interesting to see how much this changes as the current Facebook generation of medical students and residents becomes faculty and practitioners.

Reflections and next steps

Conferences like this, out of my usual comfort zone, are always interesting and raise a lot of provocative questions, particularly when you spend an intensive amount of time with people truly passionate about a topic, with words like “engagement,” “empowerment,” and “community” constantly swirling about. For myself, born several decades before Facebook, I became interested in social media as a tool for enhancing professional education and consumer health information about three years ago, related to my ASCO volunteer activity with the IT Committee, when we first started exploring the use of Facebook and Twitter as part of the ASCO portfolio. Since then, I have become a big fan of Twitter for personal enrichment and sharing, and I have dabbled a little bit in podcasting and blogging here at ASCO Connection – that is, when I am not feeling intimidated by the wonderful posts of blogger-in-chief, George Sledge.

Patients have clearly embraced social media, and we physicians are getting left in the dust. Perhaps most physicians are just fine by that, since the twin concerns about patient privacy and time commitment are always prominently mentioned in any discussion about physician use of social media. But before we assume there is safety in numbers with all of our heads in the sand, let’s not forget the institutions we work for are rapidly employing social media as well (current unofficial tally is 3,952 hospital social networking sites in the U.S.). The air may be getting a little thin underneath all of that sand, with our patients and our employers up in the sun. We do need more data, though, and that was probably my biggest take home from Medicine 2.0. Too many of the papers were anecdotal “how we did it” stories, and quite frankly the unbridled enthusiasm for all things social displayed by the attendees of the conference, while exhilarating at times, is a bit like the Silicon Valley Reality Distortion Field that Steve Jobs had been accused of perpetrating with Apple product announcements. Surveys of usage and storytelling may be a fine place to start, but we need to design some intervention studies and measure outcomes that matter. And they have to be real, hard endpoints like disease-specific outcomes and physician behavior. Plus, we need to do much more work from the policy standpoint, refining definitions of professionalism in social media, clarifying institutional terms of use, and figuring out a way to agree on best practices. (Here’s a nice summary of some of the policy issues.)

As I have been saying here, our patients employ social media tools to become more empowered and connected in their health care, and they have achieved remarkable success in just a few years. It’s time for health care providers, scientists, and policymakers to pay attention to this phenomenon. And I would submit that the field of oncology, with the enormous impact cancer has on the lives of patients and families and its current complexity, cost, and promise, might be a good laboratory in which to study this. Let’s stop focusing the conversation on social media risks and barriers and think about what good we can accomplish. I think I was the only oncologist at Medicine 2.0. Any takers here?