Consumer Committee Minutes April 15, 2024

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Minutes of the

CONSUMERS COMMITTEE

Chairs: Charmaine Graham, Marcelo Maia

Consumer-At-Large: Raffi Babakhanian

Tuesday, April 15, 2024, 2:05PM – 4:00PM

Minutes

Charmaine Graham (Co-chair), Marcelo Maia Soares (Co-chair), Raffi Babakhanian (Consumer-at-Large), Asia Betancourt, Billy Fields, Lawrence Francis, Ralph Henderson, David Klotz, Natasha Martin, John Schoepp

Staff and Guests Present:
Doienne Saab, Kimbirly Mack (Planning Council); Cristina Rodriguez-Hart, Grace Mackson, Meghan Peterson, Emma Ramsdale (DOHMH CTP Research and Evaluation Unit)

Agenda Item 1: Welcome & Introductions/Moment of Silence/Minutes

Charmaine and Marcelo opened the meeting, followed by introductions and a moment of silence.  The minutes of the March 19th meeting were approved with no changes.

Agenda Item 2: Indicators for Monitoring Stigma Among Ryan White Part A (RWPA) Clients         

Cristina and Grace presented on proposed questions for gathering data on discrimination faced by RWPA clients, adding that the HIV Care and Treatment Program wants to reduce the number of questions asked at intake.  A workgroup reviewed 16 commonly used HIV stigma data collection sources to review and select HIV-related stigma indicators for eSHARE (RWPA program intake data collection system), CHAIN, client experience surveys, and/or other potential data collection processes.  For eSHARE, each level of stigma was defined, and we separated indicators by type and subtype (e.g., interpersonal level stigma such as health discrimination, with subtypes such as denial of service, verbal harassment and disclosure of status).  Workgroup members strongly agreed on two individual-level indicators concerning avoidance of care and shame, as well as an interpersonal-level indicator on discrimination.  The Committee members were asked to vote on their top two choices for questions out of the following:

  1. Have you avoided seeking HIV medical care in the last 12 months due to fear of being stigmatized?
  2. How often do you feel the following: I feel shame about my HIV status?
  3. In the past 12 months, has the following happened because of your HIV status? (I was rejected by a friend or family member, I was rejected by a potential sexual or romantic partner, I was mistreated by a healthcare worker)
  4. Do you feel that all staff have made an effort to make you feel welcomed at the agency where you normally receive HIV care?
  5. This agency creates a welcoming environment for me in the following ways: (e.g., there is enough privacy to talk without being overheard, the people shown on posters or other informational materials look like me).
  6. Are you aware that you can make a formal complaint about services that you received at this agency?  

The poll showed a preference for question #3, with questions #2 and 4 tied for second place.  The Committee expressed their support for efforts to measure stigma and thanked the REU staff for bringing this for feedback.  Comments from the discussion included:

  • Measuring the intensity of stigma would provide important data.
  • Internalized stigma is deep rooted and difficult to overcome.
  • Much stigma is rooted in disgust with gay sexuality.
  • Providers may need technical assistance on how to ask stigma-related questions.
  • There needs to be a focus on providers not perpetuating stigma.

Agenda Item 3: Revising CAB Best Practice Guidelines (continued)

The Committee continued review of the CAB Best Practices Guidelines and made the following changes:

  • Insert language about the need for formal bylaws, which covers a number of other points in the guidelines.
  • Add that there is a focus on positive interactions and better outcomes for both clients and staff.
  • Add that CAB meetings are safe spaces and that members need to be able to speak out without fear of retaliation.
  • Recommendations about financial support from the agency and resources dedicated to supporting the CAB and member participation. 
  • In-person meetings are preferable, as they allow for more dynamic participation. Agencies must ensure that they are accessible.
  • Agencies should make CABs welcoming to clients from under-represented populations.

David will revise the slides to reflect the above changes and send to the Committee for final review.

Agenda Item 4: Expanding Consumer Outreach

Raffi presented proposed changes to the PowerPoint that Jose had used for his outreach sessions.  He stressed the importance of having Committee members conduct outreach.  The Committee agreed to review the outreach presentation at the next meeting.

Agenda Item 5: New Business/Public Comment

Doienne reminded the Committee of the upcoming virtual “brown bag” learning session.  The Mayor’s Office of Economic Opportunity will use the CAB guidelines as an example of “human-centered design”. 

There being no further business, the meeting was adjourned.