A chance for US patients to “speak to power”

The roles of patients, patient advocates, and other members of the public in decision-making about the research that is funded by NIH and other agencies here in America is sadly somewhat limited, although it is great deal more apparent and evident that it was 20 or 30 years ago.

The NIH’s Office of Behavioral and Social Sciences Research (OBSSR) is compiling a list of impactful public health and healthcare accomplishments that were made possible, in full or in part, as a result of behavioral and/or social sciences research.

One of the important accomplishments of such research has been a slow but clear increase over time in the degree to which patient engagement has helped to improve health-related decision-making and health equity across different sectors of the US community.  Furthermore, a high level of patient involvement and engagement in the processes used to determine the types of research that should be funded seems to your sitemaster to be a key factor in ensuring that out tax dollars are appropriately spent on funding meaningful research that has high potential to lead to better patient outcomes over time.

We would therefore like to suggest that many patients and advocates (not only in the world of prostate cancer might like to vote in favor of (and/or comment on) the following accomplishment specified by the Director of the PATIENTS program at the University of Maryland:

As healthcare research and healthcare services become more complicated and more focused on issues such as “precision” medicine, the voice of the patient and the other consumers of healthcare become more and more important to decisions abour how to plan such research, how to ensure that the most appropriate research is well funded, and how the outcomes of such research are actually evaluated and implemented when appropriate.

You do need to “register” with OBSSR to comment or vote on any of the accomplishments itemized on their web site, but it only takes a few minutes and we believe this is a clear opportunity for patient voices to be heard at the NIH.

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