ePatients: a connected, collaborative, creating community

The ePatient Connections (ePC) conference convened this week in the City of Brotherly Love, my town, Philadelphia. And indeed, the eHealth love did flow between health citizens and organizations that seek to serve them: technology developers and health providers, alike. My flying fingers recorded nearly fifty pages of notes, and these don’t even include two tracks’ worth of presentations — social networks in health and health games — because I was the emcee for mobile health track. However, this gave me the opportunity to get to know the 11 mHealth presenters and their organizations up-close-and-personal and to brainstorm with track attendees the many issues shaping the mHealth landscape.

The over-arching themes of the conference were (1) a growing cadre of patients-people are empowering themselves and (2) we are all patients. It’s not about the technology, either, although vendors presented many gadgets and tools to help people stay well and manage illnesses. Instead, as David Reim, founder of SimStar and shepherder of Claritin.com, the first branded Rx website, coined the zeitgeist, it’s about the Architecture of Participation. In his discussion on the mHealth track, he said mobile health means that “health care comes to the patient.”

The theme of technology-enabled care meeting up with patient echoed through the 2 days at ePC. FitBit, the wellness-nudging wearable micro device, brings together smart monitoring, deep analytics, and motivational tools that help people wanting to get or stay well to make good micro-decisions through the day. The big lesson that FitBit’s crew has learned is that you need to (1) give people a reason to care, and (2) give them a reason to share.

Text4Baby, of which I have waxed lyrically in Health Populi, was built by Paul Meyer and his team at Voxiva, who have built texting/health projects in the developing world and have brought their expertise to the lucky health citizens of America. Starting in Peru in 2001 creating the first system for health workers to use cellphones, Voxiva now operates in 13 countries in the developing world — which he unabashedly asserts are well ahead of the U.S. when it comes to using phones for health. So now the U.S., with among the highest infant mortality rates in the developed world at 6.3 per 1,000 live births, may be able to catch up with, say, Cuba at 5.1 and Slovenia at 4.8. Text4Baby is leveraging the fact that cellphones are ubiquitous in the U.S. among young women who may not know how or where to access pre-natal care. Furthermore, you don’t need an expensive smartphone to receive SMS text messages — and Text4Baby’s are free, thanks to the universe of mobile carriers who provide the texts for free. This is a public-private partnership that works to benefit all, and is a model for public health programs to study.

Bolstering the message that the mobile phone is a platform for health, Ann Aiken of the Centers for Disease Control cited a study from the American Journal of Preventive Medicine which found that, when a mobile phone is involved in a health behavior change program, positive changes increase. Aiken’s own study at the CDC discovered that 9 in 10 consumers want tailored messages to help them improve their health.

Vic Strecher from my alma mater, the University of Michigan School of Public Health and founder of Health Media (now owned by J&J) Skyped into the meeting to discuss his research. Since 1990, Strecher has tried to sort out how to help people make more effective behavior change in light of risk and fear. He’s found “the magic mix,” as he puts it, to be: more relevant messages + more elaboration + less work for the individual = more behavior change.

Susannah Fox of the Pew Internet & American Life Project beautifully described “Health care out loud,” with “mobile the final front in the access revolution.” Her research data, the standard go-to source for the health industry, finds that a mobile device “is” the Internet for so many people. She advises: “If your organization’s not available on a small screen it’s not available at all to people who depend on a mobile device to get their information.” And increasingly, that’s becoming everyone who accesses the Internet.

Sona Mehring, founder of CaringBridge, called her well-used, beloved service, “compassion technology.” The site was developed by Mehring for her friend’s newborn, Baby Brighid, to connect their family and friends when Brighid was newly-born and unwell. “When talking about health, you need to have the mission first,” Mehring counsels.

On the theme of family and friends, Margie Morris (my fellow collaborator for SXSW next spring in San Antonio) who does research on persuasion at Intel notes, “The biggest motivator for health change is relationships.” Her ethnographic studies on health behavior has found a bit motivator to be the potential loss of “social capital.” The Facebook-based app With a Little Help From My Friends via Facebook helps people stick with their health ‘contracts.’

From the supply-side of health, Joe Shields of Pfizer talked humbly about his new job in the company — as internal change agent to foster innovation. “I don’t really need an ad agency right now,” he confessed. “I need a different set of partners.” Bravo, Joe! for seeing that pharma is but a node in the patient-person’s own health ecosystem.

And to that point, I’ll conclude with an important line from my colleague and, proud to say, friend, Regina Holliday: “We don’t want compliance. Compliance is doing what you’re told to do. We want participation.”

What she’s talking about is true participatory health, a connected health paradigm with the person at the center. As Maureen Byrne of Pfizer sound-bited the concept, it’s “cognitive connectivity.” That’s real health engagement. That’s what can motivate and sustain real personal change.

Health Populi’s Hot Points:  I can’t recall a conference when I cried (yes, tears down my cheeks) 3 times. This is not a trivial confession from someone who has analyzed the intersection of health and technology for over two decades.

Thank you Regina, “Christopher,” and Dave for those moments-of-truth. In Regina’s case, it was her recitation of a poem, her version of “Howl” lambasting the health system and trivialization of the patient and family, with personal health data out-of-reach to the people who need it most — the patient and family. I was transfixed on the screen watching Becoming Christopher, Novartis‘s teleplay about a young man coming-of-age with cystic fibrosis who notes to self something like, “it’s hard to talk to my doctor about sex as he’s known me since I was a baby.” And when I saw Dave DeBronkart’s clinical results on Interleukin after 6 weeks, well, the line chart data touched my heart (OK, so I’m a visual learner and like data points).

What this gets to is the fact that health is, should be, all about the patient-person. In the case of the ePatient Connections conference, it is all about patients. Tweets from the conference can be found via hashtag #epatcon. Readers of Health Populi are clearly interested in health and the people; go construct a TweetDeck column and relive the conversation from ePatCon. You’ll learn a lot. Then read Regina’s poem, The Wheals on the Bushere.

Kevin Kruse, you’ve created a unique brand for a health/technology conference, making it all patients, all the time over two full days of content. See my PowerPoint slide at left, which I included in my own presentation landscaping the mHealth track at the conference — there’s a plethora of mHealth and related meetings. This is the only one with the patient firmly rooted in the center. Thank you and your team for making this happen.

In closing, I’d like to reiterate a message I’ve been repeating as a mantra with clients and colleagues keen to play in mobile health: it’s not about technology, or shiny new things, or smartphones or Droid vs. iPhone. It’s about meeting up, joining up, collaborative with the patient where she/he is. Support people in project-managing their health the way they want to do so. Customization, collaboration, connectivity…these are the ingredients for connected health, built on a foundation of trust.

16 Responses to ePatients: a connected, collaborative, creating community

  1. Phil Baumann September 30, 2010 at 9:15 pm #

    Excellent summary!!!

    Agree with your closing point: and these technologies should be used to bring us together with each other, not through the technologies.

    Great to see you there!

    Phil

  2. Liz Scherer September 30, 2010 at 10:27 pm #

    Good stuff my friend. At the end of the day, it’s important, essential actually, to humanize the “user experience.” If we can remember that there are humans, real feeling, speaking,emotional beings on the other end of the [fill in the blank] then technology succeeds in term so interconnectivity. If not, then it’s just a tool.

    Me? I don’t “do” tools; I do “connect in the best way possible.”

    You rock.

  3. Liz Scherer September 30, 2010 at 10:28 pm #

    And the typos. Oy. Long day. “Then technology succeeds in terms of interconnectivity.” Here, technology or the typist has failed!!!

  4. DCPatient September 30, 2010 at 10:49 pm #

    Jane, so thoughtful and well done. Technology that truly improves the patient experience, the healthcare experience and improves outcomes will succeed. Overly complicated “cool toys” that don’t solve a problem will fail.

  5. Susannah Fox September 30, 2010 at 11:07 pm #

    I’m going to a lot of conferences these days (two per week this month) and it is increasingly clear that it is very tough to orchestrate a good meeting – interesting people on stage and in the audience, diverse topics, the right mix of up- and down-time, etc. Kevin & his team (you included, Jane!) did a fantastic job.

  6. Kevin Kruse October 1, 2010 at 1:46 am #

    Jane, you are characteristically modest in this post–of course, YOU were the one that facilitated so much of this great conversation. Christine and I are so grateful and honored for your participation.

    Hosts of parties scurry about so much they can never be certain if everyone is having fun. From our vantage point there was much we liked, and much that has to change. Your generous comments provide encouragement for us to keep at it.

    – Kevin

  7. e-Patient Dave October 1, 2010 at 3:51 am #

    This post deserves the many retweets it’s getting. Thanks so much!

    Not begging here, but – did you have any thoughts about the physician perspective, with Danny Sands and Ted Eytan?

  8. BaltimoreDoc October 1, 2010 at 5:50 am #

    Really great analysis. I wonder however, when an event is put on my a pharma marketing guy if patient advocates realize they are being profiled in the exact same way that pharma profiles physician leaders?

  9. Brian Ahier October 2, 2010 at 6:20 am #

    Incredible summary! This really blew my mind…

    I’m speechless (and that does not often happen :-)

  10. HBrofman April 5, 2011 at 5:44 pm #

    Jane, glad I bumped into this while catching up on my reading. Well worth it, especially love your closing. Keep up the great work!

  11. Peter Schickler August 22, 2011 at 12:29 pm #

    HI Jane I totally agree with you on pushing the focus to where it belongs, the patient! Thank you for stating it so clearly… we developed out PCMH to be truly patinet centric, giving the patient the control over their data elements. We then tied it into a chronic disease social netowrk that Christus health in Louisiana in now implementing. Again, totally patient centric… Now, we have build a common interface that will accept sincel or batched messages of readings from a variety of devices and working daily to interface to more… So keep up the good fight – getting people to change their focus from the provider centric to the truly patient centric approach….

  12. Nikko August 23, 2011 at 8:07 am #

    Good thing i stumbled upon this article, today’s technology must be focused on healthy living and or the medical assistance not only for those shiny gadgets. Technology must be put to use to improve the medical assistance and support for people all over the world.

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