Research Forum /Patient Information and Feedback Portal

I am exploring the creation of an amputee-specific (and probably upper/lower-specific) patient/researcher portal within the DoD and VA through which patients could be informed about, help comment on and even participate in current prosthetic research. While I am particularly interested in prosthetic arms, this idea could certainly apply to the meta problem of multi-agency research specifically targeted for near-term benefit to any patient population, or to basic science research sold as having long-term benefit to such a population.

The idea is related to what we have tried to do at Open Prosthetics, although I might suggest the potential for some very important differences. Most importantly, it might be a way not only to connect amputees with researchers, but to connect researchers with each other, and could serve as a clearing house of information about the broad scope of government-funded prosthetic research.

This idea stems from my frustration in two areas. First, I am unaware of any single place where information about the complete scope of government-funded prosthetic research is collected. This includes historical grant information, IP for which the government has paid, ongoing research projects, and open RFPs. I am aware of prosthetic research projects that are funded by the VA, DoD, DARPA, NIH, NSF, and even the Department of Education and Congressional earmarks, through both basic research grants, and through the SBIR and STTR programs. If there is a single place where these efforts are discussed and coordinated, or even identified, I am unaware of it. Grants.gov is NOT it, as far as I can tell.

Second, I think that the patients themselves are a neglected and underutilized resource in prosthetic research programs. Amputee feedback is often limited (unnecessarily) by human research concerns, particularly as regards non-invasive research on minimally-risky Class I (exempt) prosthetic devices and suspension methods which use long-established methods for suspension and electrode contact. Because of these concerns, the amputees who are involved (like me) introduce personal anecdotal bias that likely doesn’t reflect the full scope of amputee opinion (or these opinions are dismissed as such when in fact they might actually be representative).

I would like to hear from anyone who is interested in discussing this problem either in general, or as specifically applies to prosthetics. Please contact me here, or at jon -at- openprosthetics -dot- org.

Thanks,
Jon Kuniholm