Building Bridges in the City by the Bay - The 2011 Health 2.0 Conference

By Stephen J. Downs

We have a few questions for you.

Every day there are people who are finding new ways and developing new technologies to observe or collect information about themselves that has the power to improve health.

For example, Pioneer’s Project HealthDesign researchers are exploring practical ways for people to collect their own ODLs (observations of daily living) and integrate them into the clinical setting – empowering individuals to be at the center of their own care.

The pioneers at Open mHealth are equally committed to involving individuals in their own health and health care as they create an open learning ecosystem and share innovative technologies to improve everyone’s health.

In another cutting-edge movement, self-trackers who seek “self knowledge through numbers” are gaining insights into their own health and health-related behaviors everyday. The number of tools, apps and devices to help them are increasing exponentially, and it seems as if we’ve only scratched the surface of what people are starting to do by collecting and sharing their health-related data.

Today’s reality is that individuals have the opportunity to have the power of their own health information literally in the palms of their hands. We can point to when our blood pressure was high during the day, how our diet impacted our energy levels or sleep, what movements or behaviors caused a flare-up in back pain.

But how many will choose to track this information? Can self-tracking become mainstream in the next two years? What about five, 10 or 20 years? And if it does, then what do we do?

How do we make sure that information is put to its best use, both for us personally and the population as a whole? As patients, what do we want our doctors to do with our self-generated data? What do our doctors want us to track, and how? How do they integrate it into our diagnoses and treatment plans?

These are some of the questions we’ll be asking this coming week, September 25-28, at the 2011 Health 2.0 Conference in San Francisco. We’re excited to be a sponsor of this event and we’ve brought a diverse group of grantees and friends with us.

We’ve been involved in the broader Health 2.0 space for some time now. Through our investments in programs like Project HealthDesign, Open mHealth and support of groups like Quantified Self, we’ve been trying to bridge the worlds of technologies and health, and the experiences of patients and clinicians.

Over the course of the conference and beyond, we’ll be asking guests to help us tackle several questions that we think are critical if this movement is to reach its full potential—and we’d like your ideas too.

So tell us what you think. Help us answer these questions. Please add your comments below. You can also message us privately at pioneerblog@rwjf.org.

1. What do you think are the most important challenges to be addressed in order to get more people collecting their own health data and information?
2. What do you think are the most important hurdles to be overcome for patients to bring this information to their doctors and for it to inform clinical care? 
3. Of all the things that one can track, what is the one piece of patient-generated data that has the most potential value to both personal health and clinical care?

As we look for opportunities to advance the thoughtful exploration of these practices, your responses will guide us. We value your input and look forward to hearing what you have to say.

 

Comments

[Allyson]

Interesting questions posed.

1) Ease of tools/apps in collecting information; awareness among patients of the benefits in collecting their own health data; and doctors promoting/empowering their patients to collect data

2) Again, ease and utility of sharing the information with doctors -- it needs to be simple for patients to do and they need to see the benefit of sharing it

3) Not sure if there is one piece, but potentially things like blood pressure and cholesterol given the high rate of heart disease

Look forward to hearing what others think.

[Jeff Meade]

1. What do you think are the most important challenges to be addressed in order to get more people collecting their own health data and information?
A: There needs to be physician involvement and feedback loops that enable engagement

2. What do you think are the most important hurdles to be overcome for patients to bring this information to their doctors and for it to inform clinical care?
A: There needs to be personalized, actionable information

3. Of all the things that one can track, what is the one piece of patient-generated data that has the most potential value to both personal health and clinical care?
A: The relevant data.

Jordan L. Shlain MD, FACP
Chief Medical Officer
HealthLoop

[Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign Director]

One piece? For everyone? Everywhere? Forever? It’s not going to happen. In fact, one of the beauties of the mHealth, self-tracking, ODL-capturing approach to personal health monitoring is that it allows the person— not the problem or the professional— to determine what types of data are most import to attend to, and then use that data as the starting point of a personal health journey and a conversation with a health professional. The game-changer here is not WHAT patient-generated data should be the focus, but that emerging tools and technologies help patients better understand themselves, and thereby become more informed self-managers and better prepared to take an active role in the clinical encounter.

For some people, in some situations, tracking a single type of observation regularly over years— like sleep adequacy—might be important. For others, the desire to self-track ODLs may be stimulated by the vague sense of “dis-ease,” perhaps leading an individual to self-monitor for a week or so the amount of alcohol he or she consumes or the number of minutes it takes to complete a routine activity.

It is tempting to want to think about self-tracking in the same way clinicians have long thought about signs and symptoms -- using evidence from research to link particular observations with underlying physiological and psychological states. These linkages themselves are far from perfect, and sometimes provide at best only a slight indicator of the underlying problem. ODLs are similar, but NOT identical to, signs and symptoms in that they serve as harbingers of the need for attention to one’s own health state.

I look forward to hearing what other individuals and clinicians think about this question.

[Gail Casper R.N., Ph.D. Project HealthDesign Deputy Director]

Thanks for the thought-provoking questions, Steve. I’ve chosen to respond to the third question because I believe that, unlike the others, it is not answerable.

Based on my experience with the Project HealthDesign grantees as well my experience as a nurse, that one datum that has the most value varies among patients/individuals and across patient groups. I think it is also affected by purpose – is the individual striving to get well, stay well or at least stabilize? In addition, what are the clinicians’ motivations for viewing data between visits?

As our Project HealthDesign journey continues, I am more and more convinced that the Crohnology.MD team’s notion of an ODL Prescription, has the greatest potential for value. (If you haven’t already done so, please read their blog post about it - http://bit.ly/lhVs3a).