As part of the money for comparative effectiveness research included in the stimulus bill, the Institute of Medicine is required to submit a consensus report by the end of June that provides specific recommendations to Congress and the Secretary for prioritizing the expenditure of the funds. They are also required to solicit public input on these research priorities, and so have created an online survey to gather feedback from “all stakeholders in health care (e.g., patients, consumers, providers, state and federal agencies, employers, manufacturers, policy makers).”
Despite this stated purpose to gather input from patients and consumers, among others, the survey isn’t the most consumer-friendly thing in the world. In fact, the instructions begin with this somewhat intimidating language:
In the next 3 pages, you will have the opportunity to submit up to 3 comparative effectiveness studies for the committee’s consideration. Please rank your suggested CER priorities as first, second, and third by entering them in that order.
Once you have submitted your top 3 priorities, you will be asked what criteria you feel are most important in establishing a national set of priorities for CER. You will be asked to select and rank criteria (e.g. disease burden, disease severity, variation in care, cost, public interest, information gap) as well as identify other criteria for the committee to consider.
Lastly, you will be asked to provide recommendations to the committee regarding what new or enhanced capacities and infrastructure are needed to sustain a national CER enterprise.
Yikes. Similarly, when asking what research topic is of interest to the survey respondent, the following is used as an example: “Compare the effectiveness of identifying pre-malignant lesions and early colon cancer by either virtual or actual colonoscopy in individuals at low to moderate risk of colon cancer.”
While seeking input from the public on health research priorities is a good thing, it’s difficult to appreciate fully while knowing that the survey instrument is not really well-designed to collect feedback from the general public.
However, if you have an area of research you would like to recommend, you should consider submitting your feedback — you’ll just need to know what medical interventions you think should be compared, comment on why you think it is important, and make some selections about the subject area the research falls into, what area the interventions fall into (such as prevention, behavioral or drug treatment, surgery, etc.), and whether any specific population is of interest for the topic (such as women).
Many of the more detailed questions (such as the most appropriate type of study) are optional, so you don’t have to include any information other than what you think should be compared and why. You can make up to three suggestions via the survey.
Your suggestions are due by March 27, 2009.
A public meeting was also held March 20 in Washington, D.C., to hear from representatives from professional associations of health care providers, insurance and pharmaceutical industries, consumer advocacy groups, public health and government agencies, and other organizations.
As Christine mentioned in her most recent Political Diagnosis, the government has also named a 15-member expert panel to advise on research priorities, including representatives of AHRQ, the CDC, FDA, Department of Defense, and other agencies. For additional background, see our previous post on the stimulus bill money allocated for comparative effectiveness research.