Consumers Committee Minutes, August 8, 2020



Tuesday, August 8th, 2020 1:00PM – 2:40PM

By Zoom Videoconference


Committee Members Present: Lisa Best (Co-Chair), Randall Bruce (Co-Chair), Atif Abdul-Haqq, Asia Betancourt, Paul Carr, Maria Diaz, Billy Fields, , Lawrence Francis, Charmaine Graham, Ron Joyner, Jesus Maldonado, David Martin, Michael Rifkin, Leo Ruiz, John Schoepp. Rob Walker, David Klotz (Acting Governmental Chair)

DOHMH: Melanie Lawrence,Jose Colon-Berdecia, Johanna Acosta

Agenda Item #1: Welcome/Introductions/Review of the Meeting Packet

Lisa Best and Randall Bruce, Consumers Committee Co-Chairs, opened the meeting, followed by introductions and a moment of silence.  The minutes of the July 21st meeting were approved with one change to reflect correct attendance.

Agenda Item #2: PC Website CAB Resource Page

David Klotz explained that a special page will be created on the Council’s website for listing resources related to CABs.  The Committee reviewed an introductory statement.  Rob suggested that the C in CAB be listed as “community/client/consumer/patient” and the “B” as board/council.  It was noted that a glossary would be helpful (the AIDS Alliance manual has one that can be extracted).  The Committee also asked for a separate part of the page be set aside for consumer resources for trainings related to participation in planning bodies and other forums.  Committee members were encouraged to send possible resources for listing to David and Melanie.

There was unanimous consent to use the introductory paragraph as amended.

Agenda Item #3: COVID-19 & HIV Consumer Information Forum

The Committee discussed plans for the next COVID-19 & HIV town hall on September 15th, which will be called a Consumer Information Forum to better reflect the format.  Adrian Guzman has agreed to give a policy update.  The CHAIN study can present on data from a special survey of study participants on how COVID-19 has impacted their lives (e.g., telehealth, financial food and housing issues).  Most of the forum will be devoted to consumer feedback.  The following is a summary of the discussion on the event and how to increase consumer participation:

  • Limit presenters to 15 minutes (plus time for Q&A) so that they do not monopolize the event.
  • Integrate polling into the CHAIN presentation to make it more interactive and generate information about COVID-19 has affected forum participants.
  • Use strategies to bring new consumers into participation in the forum: José will conduct outreach, have food providers include flyers with meal deliveries, ask NYSDOH and Cicatelli to distribute flyers to their networks, have HASA and other providers disseminate it to clients.

Agenda Item #4: 2020-21 Planning Cycle

Telehealth Issues

Lisa discussed the need to address issues arising out of the change to telehealth.  Telehealth can bring technical challenges, particularly to older people.  There are also a range of privacy and HIPAA-related issues.  There was a consensus that this is an issue that the Committee needs to understand better.  A Committee meeting this fall will be dedicated to learning more about the issue, with a range of experts to be invited, including: community health provider (e.g., Ryan Center), legal expert (e.g., LAC, HIV Law Project), policy expert (e.g., Adrian).  The information should be presented in layman’s terms and address a broad range of issues, including online security, online forms, patient rights, etc.

Older People with HIV (OPWH)

David K. noted that this issue of OPWH was going to be addressed in a community forum that was had to be postponed due to the pandemic.  It is also a priority for BHIV.  The Committee can fit this into the Quality Improvement conference, which will take place virtually in November.  The conference theme has yet to be finalized, but the proposals are all related to equity and adapting to providing services during a pandemic.  The Committee discussed that a main focus should be on long-term survivors facing a new pandemic and how they are coping.  A panel of people who have dealt with both pandemics can talk about their experiences.  The issues of the risks of daily life and protecting oneself from infection with coronavirus should be addressed, as should the specific needs of women and trans people. 

Paul moved that a sub-committee be formed to plan for a workshop on OPWH at the QI conference.  The motion was seconded and adopted by unanimous consent.  The following members volunteered for the sub-committee: Rob, Leo, Paul, Charmaine, Ron, Asia, Lisa, Maria, Jesus, Michael and Billy.

Agenda Item #5: New Business/Public Comment

Charmaine said that the Committee needs to think about homelessness and housing and how it intersects with other issues, especially substance use and mental health.

Ron reported that providers, including HASA, are working from home and that many are difficult to reach for assistance.