Consumer Committee Minutes November 14, 2023


Minutes of the


Chairs: Charmaine Graham, Marcelo Maia

Consumer-At-Large: Raffi Babakhanian

Tuesday, October 17, 2023, 1:50PM – 3:00PM


Committee Members: Charmaine Graham (Co-chair); Marcelo Maia Soares (Co-chair); Raffi Babakhanian; Lisa Best; Paul Carr; Billy Fields; Lwarence Francis; Yves Gebhardt; John Goldenbridge; David Klotz; Natasha Martin; John Schoepp; Rob Walker; Steven Wilcox;

Staff/Presenters/Guests: Doienne Saab; Meghan Peterson; Mary Irvine; Gina Gambone; Tigran Avoundjian; Kimbirly Mack

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

The meeting opened with introductions and a moment of silence.  The minutes of the October 17th meeting will be presented at the next meeting.

Agenda Item 2: Staff Transition          

David K. assured the Committee that there would be a seamless transition as he takes on the role of staff liaison, stressing that he has staffed this Committee many times and has always been involved.  He looks forward to working with the Committee and its leadership and ensuring that the work of the Committee is driven by its members.

Committee members expressed their gratitude for the work of former staff liaison Melanie Lawrence.  

Agenda Item 3: DISCO: Developing Information-sharing Standards through Community

Meghan presented on a new, innovative project to improve health outcomes through data sharing (known as “data to suppression” or D2S).  In New York City, Ryan White Part A Consumers in care are less likely to be virally suppressed (VS) than other people with HIV who are in care.  This is likely due to the population that received RWPA services and have lower incomes that the general population of PWH.  This initiative involves 27 different agencies and over 45 different individual programs and was launched in 2021.  It involves matching data from eSHARE (the RWPA data system) and NYC HIV laboratory data for an integrated view of people’s enrollments, service utilization and care outcomes. 

The D2S process was described, which results in reports that be used to address clients who are not virally suppressed.  A D2S advisory board recommended that DOHMH explore information-sharing standards that balance consumer privacy and health department goals.  The project is seeking out community feedback on HIV data sharing policies and standards and to center consumer experiences in revising the data sharing protocol for D2S.  Questions to explore include: Should data sharing be an opt-in or opt-out process; How should consumers be notified when their data are shared; What types of data and what level of detail are appropriate to share, etc.  Consumer input sessions are planned for early 2024.  Meghan solicited input from the Committee on what topics should be included in the DISCO sessions, what is important about data sharing and privacy, and suggestions for the recruitment process and keeping people engaged over the entire session.  A summary of the feedback follows:

  • The project should keep in mind consumer convenience and not requiring multiple intakes.
  • D2S is a new effort among many that seek to improve retention in care and VLS.
  • The initiative falls under the NY State data sharing requirements that support treatment.
  • It is important for consumer involvement and transparency on how data is shared.
  • A viral load of <200 may be too high as a benchmark.
  • There needs to be a balance of privacy concerns and health outcome improvement.
  • There may be other reasons for not being virally suppressed than not adhering to medications (e.g., resistance).

Agenda Item 4: Committee Workplan

David K. reviewed a streamlined Committee workplan.  Some topics that were on the initial workplan will be covered in the full Council, including reports on the implementation of Oral Health Services, Ambulatory Outpatient Care for Older Adults, and Emergency Financial Assistance. 

The topic of CABs is a Committee priority and should start with a data request on the impact of CABs, how many RWPA programs have them, how they function, etc.  David will develop a draft data request for review by the Committee in December.  Also, Gina has committed to working with the Committee on consumer engagement in programs and quality management activities.

The topic of HASA services was discussed and may be an issue for the Joint Policy Committee.  There was discussion of the fact that the HASA advisory board is not functional. 

The Committee leadership will work to refine the workplan and address items during the Committee’s planning year.

Agenda Item 5: Public Comment

David K. announced that the lapel pins have been delivered and will be distributed at upcoming meetings.