Roadblocks and Opportunities

What will it take to bring this to the next level?

Let’s go over the roadblocks:

  • pockets of people who are truly offline, which mostly describes people age 70 and older or those living with chronic disease or disability
  • people who see no reason to engage in their health, who are not motivated to change their behavior or seek treatment
  • technology that is simply a pain to use
  • communities and tools which are silos of information – unconnected to clinical practice and unable to connect with each other
  • a lack of awareness that online communities, information resources, and other tools exist and can help make a difference in health outcomes

Let’s go over the opportunities:

  • caregivers who can help someone access online resources they may need to get better care
  • a life-changing diagnosis or other event that prompts engagement – and triggers the diagnosis difference
  • mobile adoption, which seems to have an independent effect on people’s engagement online – the mobile difference
  • technology that is easy to use, that makes engagement fun and even irresistible
  • technological means to connect silos and let data flow
  • mainstream press coverage, word of mouth, and clinical programs that help to spread awareness

Now I need your help. Think about your own family and friends: who might benefit from connecting with other people to lose weight or learn about treatments? Think about your work, whether it is in clinical practice, research, or another pursuit: who might benefit from understanding peer to peer healthcare?

What are the roadblocks and opportunities you see in the landscape?

Beacons of Change

I’m going to close with examples of some leading indicators – beacons of change that address some of these roadblocks and opportunities.

Beacon #1: Patient leaders.  

Catherine Calhoun, mother of Billy, a sweet 9-year-old boy who happens to have McCune-Albright syndrome, which among other things, causes severe bone pain. They live in Louisiana but Catherine has researched and networked her way to getting Billy cared for at the best clinical centers in the country, including here at the NIH.

Catherine is also a leader of a social convoy of which she describes as “whipass patient advocates.” She sends so many patients to Billy’s bone doctor and endocrinologist that these doctors refer to the appointments as “consults for Dr. Calhoun.” She’s now working on a bioethics project and recently was in a discussion group with clinicians who talked about how cutting-edge, off-label use of medications are discreetly shared among colleagues at conferences and in social settings. But what about clinicians who aren’t privy to those conversations? Catherine spoke up: “You hope the parents find a big-mouth, trouble-making mama like me who will give them a list of the possible medications and the whys and hows and whos.”

Beacon #2: Clinician leaders.

I think that clinician involvement may be a significant piece of the puzzle — a way to spark interest among people who have internet access, who are using social tools to connect with other people, but who are not yet using any of that networking capability for health. A recommendation from a clinician is powerful.

I’ve heard of two projects approaching the nexus of social network and clinical setting.

Children’s Hospital in Boston created a social networking software application for members of the existing TuDiabetes community to report and chart hemoglobin A1c values. The resulting tool, TuAnalyze, allows people to contribute their own data and control who has access to it. Just to give you a sense of the scale, as of yesterday, 2,114 TuDiabetes users from 61 countries have entered an A1c value on TuAnalyze. 65% of TuAnalyze users say that they receive helpful info on hypoglycemia from their doctor; 72% say they receive helpful info on the topic from TuDiabetes.

I loved this quote from one of the Children’s Hospital researchers, Elissa Weitzman:

“We found this very high level of what we called ‘information altruism.’ People were willing, in a privacy-preserving model, to make individual decisions about how they were going to share their data.”

TuAnalyze opens the door between the patient social network and the clinical setting. What if that door was opened by a clinician, who prescribed TuAnalyze to her patients? Would that bring peer-to-peer healthcare to a new level?

My second example of clinician leadership is the ImproveCareNow network of pediatric gastroenterologists, which showed how collaboration among clinicians can improve health outcomes among children and adolescents with ulcerative colitis and Crohn’s Disease. By sharing data and ideas, as well as building a system to support translating good ideas into practice, clinicians improved the remission rate from 49% to 67% — with no new drugs. The Collaborative Chronic Care Network (C3N) seeks to build on ImproveCareNow’s success by adding patients, families, and researchers to the clinical learning system. By acknowledging the critical role that families play in keeping children healthy, C3N aims to connect the siloes of knowledge that exist within the patient’s home network and their clinical network.

C3N is supported by an award from the National Institute Of Diabetes And Digestive And Kidney Diseases.

Beacon #3: Technology leaders.

People who make it easy – even fun – to track health data and connect with other people.

PatientsLikeMe is the aptly named service that helps people to connect with others who share their health concerns. PLM collects self-reported patient data and helps people make discoveries about how their experiences fit in to a larger picture of health and disease. If you haven’t been to the site recently, it’s become even more accessible, opening up to all conditions and continuing to harness people’s “information altruism.” This open sharing creates a way for patients to communicate with each other and with their own clinicians – and a way for researchers to observe how conditions and treatments work in the real world.

A simpler, but just as revolutionary, example of technology leadership is the Blue Button initiative created by the Veterans Administration. Veterans can use the VA’s program, My HealtheVet, to track in their blood pressure, weight, heart rate, emergency contact information, and other health history details. The Blue Button project allows the veteran to download a simple text file that can be read, printed, or saved while maintaining control of the personal information. It’s a simple idea that is revolutionary when you think about it. One small step for man, one giant step for data liberation.

Here are my questions for you as we go into the discussion:

What if all the storytelling, discussions, and data-sharing that we know is happening among patients could be coded, analyzed, and harvested for insights?

What if social networking data could allow public health researchers to engage in syndromic surveillance?

What if, instead of running clinical trials on patients, scientists ran trials with patients?

What if patients owned the fact that we have as much to share and contribute to our health as any clinician has to share and contribute?

In conclusion:

The Pew Internet Project has found that if you enable an environment in which people can share, they will.

And the benefits of that sharing will entice others to join.

That’s peer-to-peer healthcare.