Last week we shared some of our experiences from this year’s O’Reilly Open Source Convention (OSCON). While we were there we got the chance to interview Sam Faus who spoke at the conference on Project HealthDesign’s Common Platform.  Check out the interview below and let us know what you think.

Tell us a bit about Project HealthDesign.

What is the Purpose of Project HealthDesign's Common Platform?

Project HealthDesign’s national program director Patti Brennan testifies today at the HIT Policy Committee, Meaningful Use Workgroup’s hearing on patient and consumer engagement.  You can find Patti’s testimony here. 

Patti makes a key point that reflects Project HealthDesign’s current work: patient-generated data are not simply traditional clinical data (like blood pressure or glucose) collected by patients.  Instead, patient-generated data could include a whole host of observations about health behaviors, symptoms and environmental factors that are relevant to someone’s health.  As we’ve discussed over the past couple of years in various posts (see here or here), “observations of daily living” on diet, activity, sleep, pain, mood and others can help paint a clearer picture of one’s health and the factors that influence it and also drive an incredible variety of applications that give people valuable feedback.

Patti specifically offered the committee three things that she believes must be accomplished:

1. Health information that is selected and gathered by patients must be integrated into clinical care. The flow of information about an individual’s health should go both ways – not just from providers to patients – because patients are experts about their daily activities, and providers need their insights. 
2. Health information must be accessible to patients in a computable form. Project HealthDesign’s grantees and numerous private sector companies have been developing applications and services designed to let patients use health data in innovative ways, whether via PCs, mobile devices, online communities or other means.
3. Health information for patients must be actionable. Health information must be meaningful to patients as they make decisions about their own health care.

Project HealthDesign National Advisory Committee Chair Paul Tang co-chairs the Health IT Policy Committee Meaningful Use Workgroup; other speakers today included National Advisory Committee member M. Chris Gibbons of Johns Hopkins, first round grantee James Ralston of Group Health Research Institute, Dave deBronkart (better known as ePatient Dave), Eric Dishman of Intel and Scott Mackie of IDEO's health and wellness group. 

Today, Pioneer and Project HealthDesign announced the five new grantee teams 
selected in the program’s second round of funding.  They’ll be breaking new ground in testing ways that patient-generated observations of daily living (ODLs) can be collected, integrated in clinical care processes and, ultimately, organized for action to drive smarter heath decisions by both patients and providers.  Congratulations to the grantees, who rose to the top of an applicant pool numbering nearly 150 with their innovative ideas and robust approaches:

• Carnegie Mellon University
• RTI International and Virginia Commonwealth University
• San Francisco State University
• University of California, Berkeley, in partnership with Healthy Communities Foundation and University of California, San Francisco
• University of California, Irvine and Charles Drew University
  

The teams will be working with patient populations that are managing two or more chronic conditions to collect and store various health observations that arise in the course of their day to day lives.  A later technical challenge will be to figure out best ways to share meaningful signals from these ODLs with providers and integrate that data in to clinical work flows.  National Program Director Patti Brennan writes more about this on the Project HealthDesign blog.

The patient groups are compelling, and you can see how making sense of ODLs and being able to act on them can have a tremendous outcome on their health.  Patients can use technologies like smartphones and biomonitors to harness information that better equips them to manage their conditions and make decisions that hopefully allow them to experience better outcomes, day in and day out.  Providers will get a far fuller picture of the way health plays out for their patients and be able to act on more meaningful information than that typically collected in a periodic office visit conversation. 

For example, parents of low birth weight babies will use a specially designed mobile device, "FitBaby," to record ODLs such as the baby’s temperament, exercise, feeding and sleeping schedules, as well as the caregivers’ stress levels and attitude swings. Providing nearly real-time data to clinicians will help alert them to early signs of health problems, which is crucial in treating low birth weight infants.  Another team will help young adults who suffer from Chron’s disease create visual narratives of their condition and treatment to provide concrete feedback to providers about how they feel from day to day. Patients will track ODLs of physical symptoms like diarrhea, bleeding, and profound weight loss, along with more complex social and emotional observations.

The path is not entirely clear, and lots of questions will be raised along the way.  Which is why the grantees will be sharing their learnings, experiences, road blocks, questions and successes along the way, largely via the Project HealthDesign blog and Web site.  We want their progress to be an open path along which you follow and help to guide.  We’ll be sharing updates and hope you’ll check in often as well.

If you enjoyed Steve Downs’ recent post about the Open Notes project, here’s a group with related interests. Health Data Rights, a group of organizations, corporations and individuals, is calling for a people’s right to have and share health data. They assert, in part, that -

“We the people:

• Have the right to our own health data;

• Have the right to know the source of each health data element;

• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form; and

• Have the right to share our health data with others as we see fit.”

The group includes Dossia, GoogleHealth, FasterCures, Microsoft and PatientsLikeMe. The rights have been endorsed by Adam Bosworth, David Kibbe, Esther Dyson, Tim O’Reilly, Steve Case and nearly 300 other individuals.  If you’re interested in learning more, here’s their site: http://www.healthdatarights.org/

The Pioneer Portfolio team and the Robert Wood Johnson Foundation have been interested in liberating health data for a long time, as we think that liberated data enables innovation.

If you’re interested, you can follow the conversation about Health Data Rights on Twitter.  

A bunch of things caught my eye today that may be of interest.  First, given that the Games for Health conference kicks off today and I have to sit it out this year, I was especially glad to see this article in the Syracuse Post-Standard.  It profiles one of our Health Games Research grantees, Cornell University, which has given middle-schoolers iPhones loaded with a game designed to encourage healthier eating choices.  The way they do it is pretty clever, though...the kids take care of their own virtual pet and snap photos of their food selections, which are sent to the Cornell research team.  When indicated, the virtual pet will prompt the kids to consider, say, trading in their chips for a yogurt next time.  It's more of a fun interaction than preaching, as the article points out, and it goes wherever the kids go.  I like that it shows how health is playing out apart from health care settings and encounters, and how games and game technologies may provide ways to deliver health messages to kids in ways that are so much more up their alley, and potentially so much more effective.

Second, Steve Downs and John Lumpkin blogged on June 1 on "Catalyzing an App Store for EHRs," which our friends at the Health Care Blog were kind enough to re-post.  A great conversation has kicked up around this - read the comments and add your own thoughts.

Finally, Project HealthDesign received 145 new proposals last week in response to its Round 2 CFP. National Program Director Patti Brennan talks about the breadth of ideas and wide range of observations of daily living that teams proposed - they'll be working together with patients managing multiple chronic diseases to capture and analyze health data generated in the course of daily life and test how it can be integrated in to clinical care workflows.