I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with each other.

Also, I know of patient-led groups which are powerful resources for their members, such as ACOR.org and the many groups affiliated with the National Organization for Rare Disorders, but again, I’d love to learn about some new examples, especially ones which are organized around common conditions like asthma or high blood pressure and (bonus points) have bridged the gap to include connections with clinicians.

Finally, when I think of behavior change writ large (ie, population-level) I think of organizations like Weight Watchers and Alchoholics Anonymous. Are there any other health groups that come close to those two in terms of scale and notoriety? MedHelp claims 12 million monthly visitors, for example. Does anyone else have those numbers?

Comments, please!

Are you aware of any randomized trials – in progress, or published – that examined the impact of social networking web 2.0, etc. on patient-level variables (e.g., improved rates of preventive health care, cancer screening, diabetes care, etc)?

My answer:

I haven’t done a recent literature search, but if I did, I’d start at the following sites:

http://www.ictconsequences.net/refbase/

http://www.jmir.org/search

http://www.innovations.ahrq.gov/

http://www.jopm.org/

I would also look at the presenters and innovators affiliated with these organizations and events:

http://www.connected-health.org/

http://www.medicine20congress.com/ocs/index.php/med/med2011

http://www.health2con.com/

Let’s help out this researcher. Where else would you look for publications or reports of trials in progress? Please add them in the comments.

This is a different audience for me — all M.D.s, no “civilians” — so I have been preparing for it with special care.

Last week’s Mayo Transform symposium offered me a chance to learn from surgeon Catherine R. deVries, M.D. and from critical care specialist/anesthesiologist Alice A. Tolbert Coombs, M.D. I learn every day from surgeons who use social media, such as Howard Luks, M.D., and trailblazing docs who aren’t surgeons, such as Kevin Pho, M.D.

My reading list has included a review of the 2008 Archives of Surgery article, “E-mail Access and Improved Communication Between Patient and Surgeon,” and the great discussion we had about it on this blog. I also re-read Joanne Disch’s essay in the Journal of Participatory Medicine, “Participatory Health Care: Perspective from a Nurse Leader,” about her experience in a collaborative cardiovascular surgery work environment, as well as Bill Claxton’s monster post about how he – a patient – helped develop a surgical plan to treat his cancer. One book I read in preparation for this panel was Sherwin Nuland’s The Soul of Medicine (here’s an NPR interview if you are audio-inclined).

In the spirit I try to bring to all my work, I’d love to open up the discussion early and bring in insights from anyone who would like to share.  Can social media make someone a better surgeon? What evidence would you present?  What stories would you tell?

Alternatively, why does social networking matter for surgeons? As one person said to me, “I didn’t pick my surgeon for his communication skills, I picked him because of he’s the very best at this procedure!”

Enlighten me on any side of this you care to take.

My company’s been working with hospitals the last few months, and it’s surprising and hopeful how eager they are to use social technologies. Last week social media visionary Rohit Bhargava at Olgivy (see Wikipedia page on social media optimization) wrote on Ogilvy’s blog about how hospitals have been “quietly innovating with using social media without receiving much attention or credit for it.”

Based on statistics that Ed Bennett has been tracking, 367 hospitals are using social media such as Twitter, Facebook, and YouTube. Bhargava mentions several case studies emerging from hospital social media programs, including Henry Ford Hospital’s Twitter-based Q&A during an actual brain surgery and a discussion of “the public option” on Paul Levy’s great hospital CEO blog, “Running a Hospital.”

Says Bhargava, “For those hospitals who have become sophisticated in their use, leveraging blogs, Twitter and Facebook, they often have built a significant patient channel that could be useful to partner with in order to reach for various marketing reasons, including polling, identifying potential spokespeople and crafting marketing strategy for new products.” The potential value for the e-patient is clear, and it’s great to see hospitals lead the way.

Meanwhile the FDA is considering what the rules should be for pharma companies using social media tools.

“Right now there’s been no definition of what can be done and what can’t be done,” said Mark Senak, senior VP at Fleishman Hillard and author of the blog Eye on FDA. “Regulation over social media has been taking place by warning letter rather than by standards that people can adhere. Certainly, the industry has been inhibited and lagged behind less-regulated industries in the use of social media, and that’s hurt pharmaceuticals because that’s how people are building their brands these days.”

But is this just about building brands? Bill Drummy of Heartbeat Digital is quoted as saying “I don’t view social networking as primarily an advertising vehicle at all. It’s about value exchange, creating communities of interest, and is not about a traditional advertising space. Those who use it that way do not fare well.” Indeed, e-patients can hope that hospitals, pharmaceuticals, and other healthcare entities don’t forget the “social” in social media.

E-patients who’ve been using social technology since ‘way before marketers coined the “social media” label weren’t exactly waiting for hospitals, pharma, and the rest of the healthcare industry to get on board. But there’s a growing inevitability – hospitals, for instance, realize that physicians and nurses just out of school will be digital savvy and will expect social media to be part of the environment as a matter of course.

In late October, the coalition of physicians, patients, and social media mavens who have extended Tom Ferguson’s thinking about the rise of the e-patient through this blog will launch a new online publication. The new peer-reviewed Journal of Participatory Medicine will invite the kind of evidence-based research we need to truly understand the impact of social technology on healthcare, especially the democratization of health-related knowledge and the changing role of the informed and empowered patient in the process of treatment. Pending launch, you can find us at Facebook, LinkedIn, and Twitter.

The newly drafted Declaration of Health Data Rights, created by patient advocates, caregivers, health care professionals, technology and policy experts, and entrepreneurs (in some cases, all attributes in the same person), states that its assertions are self-evident, basic, essential. The right to have information about oneself? – why the fuss? – this is America after all! Yet the practical and psychological impediments are so immense, and the impact on an individual’s failing health and the country’s economic troubles so potentially redemptive, we get why it’s so important to start spreading the news/ make a brand new start of it.

Much has been explained in the declaration’s FAQs, in the 30+ blog posts (see Gilles’ below, and e-Patient Dave’s here), and very succinctly in hundreds of tweets.

Here’s why I find this strikingly timely (and why I helped draft the document): I’ve been fortunate to work the past two years with a group of friends and colleagues formulating the Journal of Participatory Medicine, slated to launch this fall. We hope to show, through research papers and patient stories, that outcomes improve when people engage in decisions relating to their own health.

The Internet, high-speed connectivity, and the dawn of open-access publishing are innovations that have permitted entrée to the scientific literature by patients and caregivers in recent years. This, coupled with social networking in the form of community forums and support groups, has equipped many citizens with the ability to match or surpass their physicians’ knowledge of particular issues relating to their conditions and ailments. Participatory medicine postulates that combining patients’ commited research with health experts’ years of training and experience, brings a heightened level of critical analysis to the table.

Yet…. yet. For all the talk of the evidence-based approach to medicine, we are beginning to embrace the power of personalized medicine, where an individual’s numbers – be they systolic blood pressure readings or genetic propensity to stroke – may trump the double-blind, placebo-controlled study suggesting antihypertensive drugs are effective for 62% of the study population. Forget the bias of the funding institution, and forget the old-boys’ network of peer review. Assume the study belongs to the evidence canon that usefully informs 5% of physician decision making. It’s quite possibly not that important to me. Am I in the 62% of the population that will be helped by the drug, or the 38% that will not (and may be harmed by it or discomfited by the side effects). The truly enlightened, educated, empowered e-patient will be the one who knows and understands his or her numbers. The power of my data is how it quantifies me and informs my behavior and goals.

What’s exciting is that it’s not just about BMI and what you learn in health class anymore.  Kevin Kelly and Gary Wolf have made it cool with their Quantified Self blog (“Tools for Knowing Your Mind and Body”), and brought it to Wired Magazine as the theme of this July’s issue, Living by Numbers.

That’s why making it easy for us to know, interpret, and track our numbers over time — based on lab test results, scans, responses to drugs, and anything quantifiable — is going to make medicine smarter, people healthier, and the healthcare system far less costly. And while the focus here is on me, top of the list, king of the hill (yes, I’m from New York New York), I need to depend on the wisdom of crowds to push this agenda. That’s you, so please join the legions and endorse the Declaration at http://www.healthdatarights.org/endorsements, because as obvious and as unalienable as it sounds to have ready and ongoing access to your data, obstacles abound. I’ll let the other bloggers on this subject tell you about that.

For ongoing discussion about why participatory medicine matters, stay tuned to this site, with engaging and disruptive posts written by my colleagues @epatientdave, @gfry, @susannahfox, @docjohng, and others. This is the source and inspiration for our coming journal and society. (And for more on the visionary educator Paulo Freire and his prescription for e-patients, see my earlier post: Participatory Medicine as Revolution! Think Critically! Communicate!)

Disclosure: I was involved in drafting the Declaration and my job with Keas Inc. involves developing content and tools to help people stay healthy.

The book postulates that real revolution can occur only when the playing field is leveled between teacher and student, whereby critical thinking is infused in education and where ‘teachers become students’ and ‘students become teachers.’ Communication amongst students (i.e., social networking) is equally important in this equation. While in India I read this short book, substituting doctor for ‘teacher’ and patient for ‘student’ and indeed, feel better equipped for the PM agenda.

Freire expands upon the theories of Rousseau and Dewey, postulating that active learning, or problem solving using real-life situations, is necessary for the individual to translate theory into action or practice (this is the definition of praxis, invoking the company I co-founded in 1998, Praxis.MD). He describes and refutes traditional education as ‘banking,’ where the student is an empty account awaiting deposits or “prescriptions” from the teacher.

Sound bites abound in this little volume! See the quotes below, where I’ve italicized words that are PM substitutions or additions to Freire’s language:

• To alienate patients from their own decision making is to change them into objects.
• Education either functions as an instrument that is used to facilitate the integration of the younger generation into the logic of the present system (e.g., failures in health care), OR it becomes the practice of freedom, the means by which men and women discover how to transform their world.
• Patients, having adopted guidelines of their health care providers and internalized his images, are fearful of freedom. Freedom would require them to eject this image and replace it with autonomy and responsibility.
• Patients suffer from duality; the conflict lies in choice between…following prescriptions or having choices; between being spectators or actors.
• Patients must see examples of the vulnerability of the health care system so that a contrary conviction can grow within them.
• To achieve praxis, it is necessary to believe in e-patients and their ability to reason. Whoever lacks this trust will fail to initiate dialog, reflection, communication, and will fall into using slogans, monologues, and instructions.
• Problem-posing education rejects communiques and embodies communication. Liberating health care consists of acts of cognition, not transferrals of information. Arguments of ‘authority’ are no longer valid.
• The health care system is suffering from narration sickness, where the provider ‘fills’ the patient with his narration of words, and they have lost their transforming power, become sonorous. In the banking concept of education, knowledge is bestowed by those who consider themselves knowledgeable, upon those they consider to know nothing. However, in the libertarian view of eduction, the drive is toward reconciliation of the poles of patient and doctor, so that both are simultaneously playing the roles of each other and themselves.
• Health care providers who lack humility cannot communicate with their patients, cannot be their partners in naming and understanding the world. At the point of care, there are neither perfect sages nor ignoramuses; there are only people, who are attempting together, to learn more than they now know.
• It is only as patients rethink their assumptions in action that they can change. Understanding and acting upon their own health concerns—not consuming ideas of others—must constitute that process.
• Why do newspapers present different interpretations of the same fact? It is indispensable to analyze the content of newspapers following an event. This practice helps develop a sense of criticism, so people will react to what they read not as passive objects but as consciousnesses seeking to be free.
• Participatory medicine cannot tolerate an absurd dichotomy in which patients are merely following their doctors’ decisions—a dichotomy reflecting the prescriptions of the dominant elite. Revolution is a unity, and doctors cannot treat patients as their possessions.
• The dialog which is radically necessary for the participatory medicine revolution corresponds to another radical need: that of women and men as beings who cannot be truly human apart from communication, for they are essentially communicative creatures. To impede communication is to reduce men to the status of things.

As a publisher, content developer, scientist, and occasional patient, this book set me on a new path, brainstorming how critical thinking can be more forcefully injected into patient education materials. I expect the forthcoming Journal of Participatory Medicine (watch this space) will gather and present some revolutionary ideas in this vein –with your help and ideas? Let’s communicate.