Pioneering Ideas

Project HealthDesign Releases Core Technical Requirements for PHRs

Today, Project HealthDesign released an advance set of core functional requirements for personal health record (PHR) applications of diverse types. What we’ve learned as the grantee teams have progressed is that, despite the differences in PHRs designed for, say, adults managing chronic pain, caretakers of children with cystic fibrosis or sedentary adults wanting to increase their activity, there are numerous functions they have in common. Things like wanting PHR tools that track observations of people’s illness experiences, or incorporate calendaring and reminder systems that prompt users to take medications or schedule appointments.

With support from our funding partner, the California HealthCare Foundation, Project HealthDesign enlisted the expertise of Walter Sujansky and his team at Sujansky & Associates to work closely with the grantees to develop basic functional building blocks that are useful to many, if not all, of their projects. Four target components—medication list management, calendaring, observations captured in the course of daily living and identity management—were identified as representing important building blocks for many PHR applications.

Given the diversity of the grantees’ PHR applications, we expect that this set of open-source functional requirements should be useful to the broader field. They can inform the providers of PHR platforms of potential services they can offer to enable more third-party application development. This will hopefully add something valuable to what the Microsofts and Googles will provide in the PHR space. The requirements also provide an opportunity for PHR application developers to join the discussion and add their perspective on what core services are needed to support their applications.

The “joining the discussion” piece is especially important to us. The Project HealthDesign team invites you to review the functional requirements and provide comments on how you think they might work. You’ll find more information on the requirements and the ongoing work of Project HealthDesign and Sujansky & Associates on the project's site, and a longer description of this new effort on the Project HealthDesign blog.

Medical records make WIRED's list of "things that suck"

You’ve got to hand it to Wired for calling things as they see them.  In their February cover story they explore the banes of our existence – the “33 Things That Drive Us Crazy”.  Not far from the top is the header:  “Medical Records – They’re a Mess!”  It’s a pretty strong condemnation, especially when you consider that other items on the list include junk mail, air travel, commuter traffic, magazine subscription cards, and my personal pet peeve:  the hard plastic packaging that can only be opened by an arsenal of dangerous kitchen implements.  It’s a good rant and it raises some cautionary points about believing that electronic medical records will solve everything.  It also offers an exhortation for people to pressure their doctors to accept a more transparent system. 

So this of course leads to me ask what else about health and health care drives you crazy?  EOB statements?  Having to pay more for your drugs when they go from prescription to over the counter?  Send us your rants.

On Not Being Boxed In By Common Sense

Over lunch, I was reading this week's e-mail digest from the Skoll Foundation's Social Edge community, a great source for the latest on social entrepreneurship.  Today's lead feature is a string of first-person blog entries from Bill Strickland, who over time has built up the Manchester Bidwell organizations to provide wonderfully effective arts, education and career training opportunities for disadvantaged youth and adults.  A MacArthur Genius Award recipient, Strickland has become a force for economic revitalization and social change in his home city of Pittsburgh, and his model is spreading to other cities.  I was struck by what Strickland had to say about the change that he has led:

"That didn’t happen by magic. It happened because I refused to be limited by what conventional wisdom, or other people, or the cautious little voice we all have in our heads told me I couldn’t do. I haven’t accomplished everything I set out to do, but I’ve accomplished a whole lot more than I would have if I’d let myself be boxed in by common sense and “sensible” expectations."

To solve the health care problems of today and tomorrow, we need visionaries with that same persistence, ingenuity and ability to fend off the pressures and constraints of conventional thinking.  They are who Pioneer seeks to connect with and support. 

Which leads me to ask:  do you know where the Bill Stricklands of the world are working within the health sector?  We also want to connect with unique thinkers and change-leaders outside of health that can bring fresh perspectives and decidedly not boxed-in solutions to challenges in health and health care.  If particular folks come to mind, tell us, either via the blog or by e-mail.  Thanks.

Pioneer and the New Radicals

Pioneer grantee the Myelin Repair Foundation and its founder Scott Johnson are highlighted in a recent blog post (February 1, 2008) by Julia Moulden on the Huffington Post.  Moulden cites Johnson as one of a group of "New Radicals;" someone, she explains, "who has leveraged his career expertise to take on some of the world's toughest problems."

To learn more about Pioneer's work with the MRF, check out Theresa Kanter's post of a few months ago here. 

"Project Runway" Meets Health Care

I had always assumed that shopping for Italian fashion was bad for me for any number of reasons...cruel combination of sticker shock and the fact that clothes in Italy seem to be sufficiently tight on me that they cut off blood flow to vital organs.  A recent post on WIRED's blog may lead me to think differently.

Smartex, an "e-textiles" company based outside of Pisa, is designing functional clothing that not only looks good but also captures key health data.  They've created a system called "WEALTHY," (for, "wearable health care system") that uses sensor-equipped textile interfaces to continuously monitor vital signs, wirelessly relay EKG and other data and contribute to intelligent decision-support systems for patients and caregivers.  Despite its built-in electrodes, temperature sensors and conductive leads, the company's tank top (shown here) feels completely normal and even looks halfway decent.

(...fortuitously, our wonderful blog coordinator, Kate Garrett, has temporarily relocated to Pisa this spring, and may be able to follow up with an investigative site visit to Smartex headquarters.)

I know at least several Project HealthDesign teams that have considered how biosensing fabrics and materials might help people track valuable health info. in the course of their daily lives and transmit that data to their PHRs, providers, etc. Or how introducing biosensors in to people's homes -- say, in mattresses to measure sleep patterns or whether a patient actually gets up on a given morning -- can supply valuable point-in-time and trend data that provides a richer, more useful picture of how a person managing a chronic disease is really doing.  The University of Rochester's Center for Future Health has done some leading work with smart bandage technology, as well as how to empower patients to better manage their health by building off of appliances and technologies already found in the home.

So it appears that, someday, "retail therapy" may pay off physically as well as emotionally. How broad are the potential applications, I wonder? And what might be the barriers to their widespread use?

We'll be there, will you?

Games for Health has announced that the fourth annual Games for Health Conference will take place at the Baltimore Convention Center on May 8-9, 2008 (with Humana as a main industry sponsor).

The conference will engage participants in a wide range of game-related topics: everything from health behavior change, disease management and cognitive health to accessibility for games, disability-focused games, and exergaming and rehabitainment.

Program Officer Chinwe Onyekere shared highlights from the third annual games for health conference here on the blog and we will be sure to post more after this year’s conference as well (though it would be much cooler if you were there in person).

As Chinwe notes in her post, the Games for Health Conferences have been growing exponentially.  We expect this year’s conference to be no exception so make sure you register early.