Consumer Committee Minutes November 15, 2022


Minutes of the




Tuesday, November 15, 2022, 2:00PM – 4:00PM

Zoom Video Recording Link



Lisa Best

Asia Betancourt

Charmaine Graham

Billy Fields

Lawrence Francis

Tim Frasca

Yves Gebhardt

Marcelo Maia

David Martin

Natasha Martin

John Schoepp

Rob Walker

Steven Wilcox


Tigran Avoundijan

Connor Emmert

Graham Harriman

Mary Irvine

David Klotz

Kimbirly Mack

Meghan Patterson

Agenda Item 1: Welcome & Roll Call, Ice Breaker, Moment of Silence,

Reminder to Review Rules for Respectful Engagement, Approval of the Minutes

Minutes were approved with changes. The moment of silence was conducted. A debate over how, whether and when to review the Rules of Respectful Engagement highlighted the following points:

· No need to review the rules as they do not change

· Review is important for new members

· Can have a set amount of time for review, and review continuously month to month staying within the allotted time

Agenda Item 2: Deliberative Democracy with

Tigran Avoundijan, Meghan Peterson, Mary Irvine and Connor Emmert

Will discuss the data to suppression project, the origins of the project, the plan to develop an appropriate informed consent to inform the creation of a consumer level report to enhance program resources to support viral suppression in RWPA behavioral health and housing program settings. The report will include viral suppression, status and additional capacity building support. Housing instability, mental health issues and substance use disorders are often cited as the top three barriers to HIV care, treatment, and engagement. Behavioral health and housing programs often lack direct access to data on consumers. including viral suppression status. Providing this information is hoped to support improved targeting and prioritization of resources.

Since 2021, a larger Data to Suppression (D2S) project has been ongoing with 13 Ryan White agencies. Last December saw the second ever report sent out and the next round of distribution will include 14 additional agencies. Routinely match RW data to surveillance (suppression or D2S?) data and now are leveraging this match to support providers.

In NY RWPA, consumers are less likely to be virally suppressed than other people in HIV care – only 69% of RW consumers has achieved viral suppression in 2022 compared to 86% of other people in HIV care.

This work has moved forward due to the removal of previous legal restrictions on data sharing. The reports are now generated every 6 months and focus on people who have fallen out of care through a secure file transfer protocol called health commerce.

These reports are reviewed by the agencies and are addressed by the quality management team. Programs than internally consult on how best to follow up with consumers who are listed. The reports support routine programmatic support check ins and data to suppression quality improvement projects.

Consent has been a significant concern for clients. PWH may not be aware of mandatory HIV reporting requirements. The changes in the legal restrictions have not been accompanied by an informed consent process – and to do so, are centering consumers in the development process.

Proposes requirement for Consumers’ consent to be meaningful and uncoerced – it cannot be a condition of enrollment or receiving services and it must be built into routine electronic reporting systems.

Questions to consider in developing an informed consent process:

1. Should data sharing be an opt-in or opt out part process?

2. Should clients auto data um automatically be shared with support services providers?

3. Should the pressure be on clients to then opt out of that data sharing process?

4. How often should consent be provided? Yearly? Monthly? Every time?

5. How should consumers be notified when their data are shared?

6. Should it just be a one-time consent that covers all data sharing that happens in the future?

7. What are the appropriate situations or reasons for the consumer data?

a. Is sharing to support viral suppression the only reason for data sharing? Or are there other reasons to share data with Ryan White party service providers?

8. What concerns and questions do consumers have about HIV data, sharing and disclosure notifications?

9. How could we conduct this study with no additional resources?

The proposed plan is to use the deliberative democracy approach to get consumer input. What is being proposed here is still in draft form. Deliberative democracy is a framework for research that posits that people have the right to engage in the planning and implementation of their own health care individually and collectively. People who receive health care are the experts in their own care. A deliberative democracy experiment recruits’ groups of citizens who can directly inform policy decisions for ethically complex problems through a process of deliberation.

Currently the process for conducting deliberative democracy would happen virtually over two days of half day sessions, starting with background sessions on consent and privacy, with expert testimony provided on these topics. Small group work would be employed to discuss and form preliminary resolutions and proposals. The second half day session would see these proposals presented to the larger group. Participation would be incentivized. Would work with data to suppression agencies to recruit consumers.

The outcomes from the second session would be one-sentence policy statement answers to each question that we proposed. Groups could submit as many one-sentence policy statements as they’d like. Would also analyze these discussions thematically.

The two-day session would be followed by a larger meeting where policy statements from the small groups are voted on and then the two deliverables would be a finalized informed consent and a report on the process. Want to ensure PWH are involved in each step of the process.


· Exciting to see consumers engaged from the beginning of the process

· It’s a lot of information – concerned about people understanding the process

· Want to know a concerted effort is being made to ensure consumer consent

· Should be easier for consumers to access their own data

· Would like to get a notification like those I get on my phone

· If PWH decide to consent to this sharing of information, they’re agreeing to have their um lack of viral suppression at a given time, or their loss to care at a given time be communicated to their behavioral health and or housing service provider under Ryan White party. This information is already routinely shared with medical providers, but it was not previously shared with support service providers. This consent will inform that process.

· A program may have a patient navigator help them to address the barriers that’s caused a person to be out of care or unsuppressed. So that patient navigator type person may recognize that a person could use help with getting a different primary care provider. They may recognize that they’re having problems receiving their medications if they’re getting mail order, or delivery, etc.

· Inside the research and evaluation unit, do not have contact info like email and phone for PWH – must reach people thru their provider – and we cannot give providers exact viral loads- can only give them categories of people, in care, lost to care, etc.

· We should really be empowering PWH to access and understand their own data

· Were the legal restrictions removed due to COVID?

o It’s independent of COVID – has to do with care coordination regulations in NYS and the following legal interpretation of the changes. Transition to share with behavioral health and housing providers happened in 2021

· Worry that data is being fudged if the meetings for this process are not in-person. And the lack of Consumer Advisory Boards to address these issues

· What about including when consumers don’t need certain services any longer? Is that represented here?

o When people cycle out of the program they are no longer included. Follow up would be with people who are identified to need additional services. Cannot share info with providers who no longer have a therapeutic relationship with the client. Sometimes out of care clients have really just moved to other providers or out of the jurisdiction.

· More wondering if people can remove their consent if they no longer want to be part of the project. Like maybe they transition to injectables.

· What are the fail safes for when others drop the ball (i.e., not documenting an appointment properly?)

o A missed appointment would not get someone on the list – would have to be missing evidence of a viral load for a 12-month period. No one is blaming clients who are not suppressed. It’s to identify the best approach and support to get people back into care.

· When gathering info from consumers, important to build trust and rapport first

· These reports are not just about the consumer – if a site is dropping the ball, it really shows on these reports. The reports help identify structural problems, and where to focus quality improvement strategies.

· This project is interested in feedback on how to recruit consumers to participate in focus groups and welcome participation from all CC members. Can share our recruitment plan once it is developed.

· Committee is interested in an overview of the various projects and initiatives taking place across HIV in the DOHMH

Quality Management Workplan Review

The recipient was unable to lead a presentation on the quality management plan. The committee was to review the draft quality management table that is included as part of the plan. A review of the table began but segued into a discussion around the meaning of the table’s language. The question of having sufficient time during CC meetings to fully engage with presentations also arose. The committee expressed frustration with the lack of information on the process. Should the committee assign a subcommittee to review the plan due to the unexpected changes in the process?

The committee determined tentative meeting dates to continue the QM discussion with appropriate recipient support.

Lapel Pin Subcommittee

· A set of designs has been created by the students in both design classes at Pratt Institute. These were presented to the lapel pin subcommittee.

· Narrowed down to 7 possibilities, but would like everyone to chime in.

· Next step will be to review initial criteria and rate the designs

· Working through a conversation on procurement

· Will need an MOU with the designer.

· Next meeting is Dec 2nd at 1pm

Process for Nominations & Schedule of Vote for Consumer-at-Large

· The Consumer at Large position basically adds an additional consumer voice on the executive board of the Council – bylaws state this

· Try to represent those who are not in the room.

· Helps with the facilitation of the CC

· Up to the person to build the role as they see fit

· Contributes to the culture of the CC

· Melanie will request nominations by email

· Not required to attend every meeting! But helpful to bring back info from other committees

· Only way to change the bylaws is through the rules and membership committee process

Public Comment/Other Business

· Important to attend HASA meeting – Melanie sent an email, please share widely


1. Be honest and specific

2. Focus on content rather than personalities

3. State your views and allow others to state theirs

4. Treat everyone with respect

5. Wait to speak until recognized

6. Try to identify practical solutions as well as problems

7. Recognize that the facilitator may have to limit discussion to move the agenda—apply the “three-minute rule” to limit the length of an individual’s comments

8. Keep focused on the goal of the Planning Council: to provide the best possible services to consumers—and put aside personal agendas

9. Disagree without being disagreeable

10. Be prepared to report back the topics and outcomes of the meeting, but keep the confidentiality of individual speakers

11. Keep an open mind—make a decision only after information has been presented and discussed

12. If you are unsure about what someone said, respectfully ask them directly

13. If you are upset, take some time to calm down before engaging in further public discussion

14. Both follow and help enforce these ground rules

Please note: All Council and Committee meetings are recorded and open to the public (with some exceptions).