11
Aug2021

In the early days of the AIDS epidemic, groups like ACT-UP (AIDS Coalition to Unleash Power) and others worked in powerful and creative ways to demand better treatment for HIV and AIDS and to speed up and improve the process for developing these drugs. People with AIDS did not have the luxury of time. We needed better drugs now because we were in danger of dying quickly once we were sick enough to be diagnosed. One of the changes the community activists demanded was that people representing the AIDS community be given a chair at the table. We wanted community input at all levels of AIDS research, from the allocation of research funds, to the development of studies, to the oversight of the research , and to the publication of the results

I was diagnosed with AIDS and went on disability at about the time the demands of ACT UP and others were being addressed.  The immediate impact on me came at the local level. The AIDS Research clinic at the University of Alabama at Birmingham (UAB) had been invited to join a network for federally funded AIDS research clinics called the Adult AIDS Clinical Trials Group, or AACTG. One of the requirements of the AACTG was that each clinic must have a Community Advisory Board (CAB).  The local CAB participated in the selection of research to be done at the clinic. Our opinions were actively sought and respected by the researchers in the clinics. I became the chair of our local CAB. As the chair, I got an expense paid trip to the national conferences of the AACTG. I saw how the national CAB participated in setting research agendas, selecting which ideas would become research studies, deciding how these studies would be designed, and making sure the informed consent forms accurately represented the study procedures and risks in a format that would be readable and understandable. 

After serving at the local CAB chair for two years, I was invited to join the national AACTG CAB. At the time I joined, the AACTG had three main areas of research. Each had its own Research Agenda Committee, or RAC. Each RAC, on an annual basis, set priorities for the types of research it planned to fund that year.

As the RACs developed their annual priorities, CAB members set priorities for what research was important to the people living with HIV and AIDS.  These were not always the same as what the researchers on the RACs wanted to study, but the powerful lobbying of the community members helped the community’s research goals get included in the final selection of new research to be funded by the AACTG.  The rapid progress of AIDS treatments in the 1990s was possible because of our collaborative approach to setting priorities.

In my later career in research, first as a regulatory coordinator for the UAB 1917 AIDS Research Clinic, and then as a manager/director for IRBs at three institutions, I wondered if the same principles of setting priorities for research, with community input, would help ensure that limited resources at research institutions could be used for maximum benefit to science and patient care.

Harry C. S. Wingfield, MFA, CIP has been a research participant, a research participant advocate and activist for AIDS research at the national level, a research regulatory coordinator for a major AIDS research center, and a senior staff member for Institutional Review Boards at the University of Alabama at Birmingham, Methodist Healthcare System San Antonio, and Orlando Health.  He holds an ABJ (BA in Journalism) from the University of Georgia and an MFA in theatrical design from the University of Texas at Austin. He is the author of Human Subjects Research: An Insider’s View, available on Amazon.  He is currently retired and lives in Davenport, Florida near Walt Disney World, and serves as a Board alternate and consultant for the IRBs at the University of Central Florida and at Orlando Health. Visit his website at www.oldmanknowsstuff.net

Guest contributors are valued members of our community willing to share their insights. The views expressed in their posts do not necessarily reflect those of PRIM&R or its employees.

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7 thoughts on “Community Input for Research Priorities

  1. Erica

    “…I wondered if the same principles of setting priorities for research, with community input, would help ensure that limited resources at research institutions could be used for maximum benefit to science and patient care.”{

    To be continued???

    Reply
  2. William L Freeman

    Harry, Right On!
    From ACT-UP, to the CAB required of every AACTG, to the CAB for the National AACTG and the RACs, this structure was an example for American Indian and Alaska Native (AI/AN) Tribes and communities. They too established CABS as part of their and their IRB’s promotion of Tribal-/Community-Based Participatory Research. (Some CABs today call themselves Community *Action* Boards because they do much more than advise, they are Co-Investigator members of the research team.)
    I know this because ACT-UP, AACTGs, RACS, and activitist IRBs inspired me as Chair of the Indian Health Service starting in 1991.
    Thank you for your work that affected so positively more than you may have realized!

    Reply
      1. William L Freeman

        Oops – a typo. I should written, “… as Chair of the Indian Health Service IRB starting in 1991 ….”

        Reply