Researchers consult Veterans
Over the last 20 years, there has been a cultural shift in health care research. More researchers are engaging more with patients. This partnership brings patients’ firsthand knowledge of living with and receiving treatment for different conditions into the research process. This approach makes the research more meaningful and highly applicable, and VA is a leader in this endeavor.
A recent study across seven VA research networks led by the Minneapolis VA highlights various efforts that involve Veterans as consultants in research.
“Building solid bridges between Veterans and VA researchers is really important to me,” said Tracy Sides, the study’s lead investigator. “I see the positive effects these collaborations have on the people involved in the research, which ultimately translates to better care and health for Veterans.”
Sides identified over a hundred activities, like setting up research priorities, recruiting Veteran participants and interpreting study results, to see if a combination of researchers and Veteran consultants on studies would translate into better patient care.
By the end of the study, they concluded that continued involvement of Veteran voices at the table is essential.
“Bringing researchers and Veterans together to share their expertise and experiences in true partnership is exciting,” said a Navy Veteran who participated in Sides recent study. “We all share a deep commitment to improving the health and lives of Veterans and their families, but we aren’t often in the same room—either a ‘real room’ or a virtual one!”
Get involved
Many VA medical centers are conducting regular studies, like Minneapolis VA which has over 30 active studies.
There are opportunities for Veterans to get involved with VA research as consultants, either as an individual or as part of a Veteran Engagement Panel. And there are even more opportunities for Veterans to get involved as study participants.
Are you a Veteran interested in consulting on VA research studies? Find the latest opportunities. Please note that some studies will compensate Veteran and caregiver partners, while others are strictly for volunteers. Some may include specific duties, and some may require regular or periodic group meetings.
This article was originally published on the VA Minneapolis Health care System site and has been edited for style and clarity.
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Interesting article, albeit sidestepping several pieces of truth. “Over the last 20 years … ” Should one choose to actually investigate this claim, you will learn it has been much longer. “This partnership brings patients’ firsthand knowledge of living with and receiving treatment for different conditions into the research process. This approach makes the research more meaningful and highly applicable, and VA is a leader in this endeavor.” Really? Says who?
Allow me a few minutes.
After learning that MY medical information (undisclosed to me) was being utilized for “research” with Emory University via the Atlanta VAMC, I requested a copy of what was being shared with this third party. Again, unbeknown to me, the patient, the owner of MY medical information. Has anyone heard of HIPAA? I digress. My request for a copy of MY MEDICAL INFORMATION, being shared with Emory University, was DENIED. What? MY MEDICAL INFORMATION! Upon being told that I would not be “allowed” to receive a copy of MY MEDICAL INFORMATION in the database that was being managed (within the Atlanta VAMC) on behalf of Emory University, by my Primary Care Provider and Chief, Infectious Disease Clinic, Dr. Abeer Moanna, I proceeded to the director’s office to consult with legislative liaison, Tincie (since retired). After discussing the situation with her, she phone the “keeper” of the information at the Atlanta VAMC. She requested the “authority” denying my request for my medical information from the database. He (yes, I know his name) did not (could not) answer. Tincie followed up with a written internal message requesting this same information…under what/who’s authority can a patient be denied a copy of her/his medical record information contained in a database housed at a VA Medical Center for peruse with a third party institution. After two weeks, no answer. No accountability. Pound sand. Too bad, so sad. Really?!!!
I then met with the Director of FOIA, Atlanta VAMC. She confirmed that I was entitled to a copy. Then, a meeting was conducted between the “architect” of the research database at Emory University, the Director, FOIA, my PCP Dr. Moanna and myself. This was a very informative meeting and unveiled a great deal of information and knowledge. I did receive a copy of MY MEDICAL INFORMATION contained within the database, after completing a FOIA request. Why? Why was I denied this information from the jump? Why was there no “authority to conceal” the information provided? (Because that is exactly what it was … concealment of MY MEDICAL INFORMATION.) Why did it take a meeting? Why is navigating the VA medical system a battlefield, most of the time? Why? Publishing articles such as this is far from the “reality” and “truth” when it comes to research within the Veterans Administration Medical System.
So, is this article being published to s l o w l y reveal what has been transpiring without veterans’ knowledge and concurrence for a very, very, very long time? In my modest opinion, worthy of pause and ponder.
Excellent response! I have no doubt many veterans will benefit from the information you have shared. I applaud your persistency.