Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign Director
As director of the RWJF-funded Project HealthDesign initiative, I commend the President’s Council of Advisors on Science and Technology (PCAST) for the effort and care evident throughout their December 2010 report, "Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward," and for the attention given to patients and their health information needs. I am encouraged to see that the technical standards and structures the council recommends will allow for broad and safe use of health information in the future. I also appreciate the report’s openness about the privacy and identity management concerns involved in this significant undertaking.
Yet even as I affirm the overall spirit of the report, I find myself searching for a more explicit focus on the patient. I was hoping for a report addressing health information technology, but this report focuses more on health care information technology.
Effective management and use of health data must contribute to the improvement of the health of individuals, families and societies. I echo the comments of Chris Gibbons of Johns Hopkins Urban Health Institute, who emphasizes that health data includes the life experience of the individual, which encompasses—but is not limited to—clinical encounters.
Through my work with Project HealthDesign, I have learned that clinical data tell only part of the patient’s story. We must also value any data that the patient values. Patient-defined, patient-generated data such as observations of daily living (ODLs) contribute to a full picture of the patient’s health and complement clinical care data.
ODLs serve as personal health sentinels, which give individuals cues about their health or alert them to take personal health action. Because they arise from the patient’s experience, not the clinician’s perception, ODLs may be the most truly patient-centered type of personal health data. I believe the standards and structures PCAST recommends will prove sufficiently robust to handle even these types of data.
From its beginning, Project HealthDesign has advocated a vision of health information technology (HIT) in which applications draw data from many sources and synthesize and present it in ways that guide action. As bodies such as the ONC and FDA deliberate the PCAST recommendations and use them to guide the criteria for demonstrating meaningful use of HIT, I exhort them to hold fast to the fundamental purpose of effective health data management, which is to improve health.
Related resources
• Read the full PCAST report [pdf]
• Read Project HealthDesign National Advisory Committee member Chris Gibbons' [bio] comment on the report
• Read Project HealthDesign National Advisory Committee member John Halamka's [bio] primer on PCAST-related technological terms
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Posted by: Jayzee Manlapaz | January 21, 2011 at 07:40 PM
Great comments Patty. I posted this on Chris's blog as well so apologies. But my reaction to your comments was the same: The PCAST focus on clinical encounters as the priority health IT challenge belies the over-arching emphasis on acute car in the US delivery system. One of our fundamental problems as a nation is our over-built acute car delivery system in contrast to our under-resourced wellness/chronic care/prevention/compliance efforts. I realize IT reform has to start somewhere, and improving hospital and acute care efficiency is a start. But as other bloggers have mentioned, those initiatives are already well underway. I'm not sure you were going quite this far, but I certainly have the view that many of the governments initiatives will serve to further enfranchise obsolete infrastructure, and ossify incumbent vendors in a way that delays the kind of lateral expansion of HIT networks that serve the broader goals of improving national health levels and ultimately, consumption of healthcare resources.
Posted by: Brandon Hull | January 24, 2011 at 08:09 AM
I applaud your efforts to break down the glass wall between patients and their care teams. ODLs are a critical component in building a well rounded view of ourselves and help us develop self awareness, leading to better health.
Keep up the great work. We would love to have you talk about this at an upcoming HealthCa.mp event. (http://healthca.mp/calendar)
Posted by: Ekivemark | April 20, 2011 at 10:10 AM