Consumer Committee Minutes December 19, 2023

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Minutes of the

CONSUMERS COMMITTEE

Chairs: Charmaine Graham, Marcelo Maia

Consumer-At-Large: Raffi Babakhanian

Tuesday, December 19, 2023, 1:00PM – 3:00PM

Minutes

Committee Members: Charmaine Graham (Co-chair), Marcelo Maia Soares (Co-chair), Raffi Babakhanian (Consumer-at-Large), Paul Carr, Billy Fields, Lawrence Francis, Yves Gebhardt, John Goldenbridge, David Klotz, David Martin, John Schoepp, Rob Walker

Staff and Guests Present: Doienne Saab, Alyssa Creighton, Catherine Miranda, Kimbirly Mack

Charmaine and Marcelo opened the meeting, followed by introductions, a roll call and a moment of silence.  The minutes of the October 17th and November 14th meetings were approved with no changes.

Agenda Item 2: DOHMH BHHS Partner Portal (Salesforce) Project    

Alyssa presented on the DOHMH Bureau of Hepatitis, HIV and STI (BHHS) Partner Portal project.  As background, she described the New York Knows directory, a portal for external partners to submit data reports, make referrals, find the latest HIV prevention resources and update information on the NYC Health Map such as HIV/STI testing and PrEP.  After hearing feedback that the portal was siloed and that partners were doing similar data entry, it was decided to create one centralized portal that will be adaptable to interact with partners, largely around sharing resources, building connections (including for referrals), submitting aggregate data, and facilitating training and education requests.  The timeline for the new portal was described, from initial planning in December 2022 to launch in January 2024, followed by a portal demonstration.

In the discussion, it was stressed that while the portal is mostly for organizational partners, some elements will be open to the public (e.g., the community calendar and resource library), and that the portal will not be the sole source of contact with DOHMH but will make it easier.  Alyssa will also look into how the Council can be incorporated into the portal.  

Agenda Item 3: Client Advisory Board (CAB) Data Request

David K. presented a set of draft questions for a data request to the Recipient for fact finding on the current state of CABs in Ryan White Part A (RWPA) programs.  The information would provide a baseline for the Committee to consider next steps.  Questions include: how many RWPA-funded agencies have CABs, how many are specific to the RWPA program, how many are broader agency CABs that get feedback on the RWPA program along with other programs, how often do the CABs meet, how are members and leadership chosen, what reports or documentation does DOHMH receive from agencies that have CABs, successes and challenges for those agencies, successes and challenges of agencies that receive client input through other means.

In the ensuing discussion, members made some edits to the data request questions and stressed that CABs are a very effective way to obtain client input into programs and if run effectively give a lot of power to the consumer voice.  Many in the group felt that CABs should be mandatory at RWPA providers.  Rob talked about the best practices that made the CAB at Callen-Lorde effective (other resources are available on the Council website).  It was noted that CABs require resources to adequately support them, and that they are good venues for recruiting new Council members.

There was a consensus to submit the data request to the Recipient.

Agenda Item 4: Consumer Letter on Procurement

Raffi presented a draft letter regarding the difficulty the Council staff is having getting Council support budget items approved.  The letter would stress that other than personnel services (OTPS) expenses such as food for meetings, incentives for participants living with HIV, and support of the Council website, despite being completely grant funded, have been indefinitely delayed causing disruptions to Council operations.  This is detrimental to the effective operations of the Council and if it continues, may jeopardize the Ryan White grant that over 13,000 New Yorker with HIV rely on.

There was a discussion on the process for the letter and who it should be addressed to.  There was a consensus that the letter should be addressed to the Director of the Office of Management and Budget, as they are causing the issues, but that cc’s should go to the Mayor, Comptroller, Health Commissioner and Dr. Quinn.  The Committee agreed with a suggestion from Rob that a final draft will be circulated to the leadership and then sent off, given the urgency of the issue.

Agenda Item 5: Public Comment/Other Business

The Committee decided to send an appreciation card to Melanie Lawrence for the work she did supporting the Consumers Committee.  Committee members will be able to express their own sentiments on an electronic card that will then be printed and sent to Melanie. 

Kimbirly thanked the Committee for inviting the ESCALATE team and announced that the anti-stigma initiative is seeking one more consumer for their learning collaborative.  Also, there may be opportunities to attend an NMAC-sponsored conference in Philadelphia.

Raffi related a story about the sub-par care a friend received at several facilities where there was a lack of basic knowledge around HIV care.