(Background: Most government advisory committees are stocked with representatives of corporations and special interest groups who distort government policies, sometimes unconsciously and with good intentions, to fertilize their own turfs. In health information technology, we have a rare chance to ensure that the most affected members of the public actually have their own direct representative. The GAO is directed by law to propose members for a Health Information Technology Policy Committee, and there is an opening for someone who “advocates for patients or consumers.” A movement is building in support of Regina Holliday, nationally famous for her work on opening patient data, comments on Meaningful Use, and her images in her Walking Gallery. My letter follows. Letters to the GAO, HITCommittee@gao.gov, are due May 25.)
Government Accountability Office
441 G Street NW.
Washington, DC 20548
Dear Sirs and Madams:
I am writing in support of appointing Regina Holliday as a patient and consumer advocate on the Health Information Technology Policy Committee. I suggest this on two grounds: that she would be an excellent contributor to the committee, and that it is critical for the committee to hear from directly patients rather than the proxies who usually insert themselves in place of the patients.
Ms Holliday is nationally recognized among patient advocates as a leading expert on the patient experience and on the information technology required to improve health care, particularly the tools that will enable patient engagement, the Holy Grail of health care reform. Ms. Holliday is an expert on the Meaningful Use requirements that embody the health provisions of the American Recovery and Reinvestment Act (having submitted substantial comments on Stage 1 of Meaningful Use) and has advocated over many years for both technologies and policies that can improve delivery of health care and health information to patients.
Furthermore, Ms Holliday is in an excellent position to reflect the influence of public opinion on the HIT Policy Committee. She is a tireless researcher and advocate in the area of patient engagement, mastering both traditional channels such as lectures and modern Web-based media. In her Walking Gallery she collects stories from other people who have engaged intensively with the health care system and reflects the widespread experiences in her advocacy work. She is articulate and clear about the demands made by the public.
Finally, I would like to stress the importance of appointing an independent expert voice such as Ms Holliday on the HIT Policy Committee. Organizations claiming to represent patients have institutional agendas that always take first priority in their advocacy work. Members of the HIT Policy Committee who are paid representatives of established organizations are constantly tempted to bend policies to favor those established institutions, and the actual needs of the patient are never paramount. The thrust of the patient advocacy movement is to elevate the health of the patient above the continuity or profit of the institutions, which is why the voice of someone like Ms Holliday is crucial.
Andrew Oram
Editor, O’Reilly Media
(This letter represents my personal view only)