It’s said that a camel was the result when a committee got together to design a horse. Over the next two months, the Institute of Medicine and the Office of the National Coordinator for HIT (Health Information Technology) will convene 100 experts to debate and design what a national HIT infrastructure should look like, including the rules of engagement needed to support the ambitious goals of health care reform. Rather than taking on health care reform piecemeal, this will be an effort to take on all the different issues that individually seem unsolvable. Because the thorny and contentious issues are often closely intertwined, a global approach appears more likely to obtain a measure of success.
Participants represented a diversity of perspectives and included patient groups such as the Armstrong Foundation; federal agencies such as FDA and CMS; standard-setting organizations such as NQF and CDISC; nonprofit public policy bodies such as the Brookings Institute, Rhode Island Quality Institute, and California Health Care Foundation; HIT-related organizations such as AMIA, Regenstrief Institute, and Health 2.0; and a variety of academic institutions and large medical groups. At the first session, held July 27-28, the tasks were divided into the following areas:
- Technical Infrastructure: Interoperability of data and knowledge creation through standards, grids, clouds, and distributed data networks
- Public engagement and Population Health: Cost transparency, personal health records, chronic disease management, and disparities in patient access to electronic information
- Weaving a trust fabric: Privacy, HIPAA, and system security
- Governance and Stewardship: Public acceptance, trust, and oversight
- International perspectives on HIT
- A Futurist’s view
My first reaction as an oncologist being exposed to this remarkable display of the complexity of health care reform was akin to “we’re not in Kansas anymore.” My second reaction was that those of us who care for cancer patients will need to reexamine, rethink, and refresh all that we do, so that we retain a relevant voice in health care reform. We can accomplish that by turning outwards to recognize the legitimate concerns and goals of all others involved in healthcare.
We will succeed if we are smart enough to position ourselves as a model for how specialty care can be a positive force for change and innovation. And perhaps most difficult, my fellow wizards, we will need to change our thinking so that we are less enamored of technical measures of quality and focus more on measures that patients can relate to. When I recently asked our breast surgeons for data elements they were interested in, they suggested mm of surgical margins, understandably important to the surgeon, but of uncertain relationship to ultimate patient outcomes. When I think about what my patients want to know, more likely, it is when they will be able to return to work after chemotherapy. The sad fact is that while I have some sense of that answer, I don’t collect that data and without that I don’t have a handle on how I might improve that outcome.