Consumers Committee Meeting Minutes April 16, 2019


LGBT Center, 208 West 13th Street, Rm 101, NY, NY Conference Call Info: 1-866-213-1863, Access Code 3587454#
Tuesday, April 16, 1:00PM – 3:30PM

Planning Council Members Present: Billy Fields (Co-Chair), Saul Reyes (Consumer At Large),        

Atif Abdul-Haaq,  Paul Carr, Maria Diaz (Co-Chair, Tri County Steering Committee), Monique Mackey, Jesus Maldonado, Malaya Manacop, John Schoepp 

Planning Council Members Absent: Lisa Best (Co-Chair), Asia Betancourt, Randall Bruce, Charmaine

Graham,Justin LiGreci, 

NYCDOHMH:  Amber Casey, Jose Colon-Berdecia, Kalani Thaler, Darryl Wong 

Others: Angela Aidala (CHAIN Project), Ron Joyner, David Martin, Leonardo Ruiz, Rob Walker 


  • Current Meeting Agenda & Minutes of March 19, 2019 meeting
  • Rules of Respectful Engagement
  • Ryan White commemoration
  • eSHARE Demographic Tip Sheet
  • eSHARE Assessments – Frequently Asked Questions
  • Consumers’ Comments & Feedback on Intake Assessment 
  • Service Needs & Utilization NYC: 2015 — 2017, CHAIN 2018-1A Report, Yomogida, Messeri & Irvine, Columbia University Mailman School of Public Health, 1/22/19
  • Summary of Recommendations from QI I – Consumer Solar System
  • How to Build a Better PLWH Advisory Board, Breakout Group Notes from the Ryan White National Conference, December 2018
  • Evidence-informed practical recommendations for increasing physical activity among persons living with HIV, Montoya, Jankowski, et al,, Journal of AIDS, 2019, 33:931-939
  • NATAP: Exercise Prescriptions by HIV Doctors, NATAP, 4/6/19, private communication
  • Acute Hepatitis C among Men Who Have Sex with Men Living with HIV, NYCDOHMH Health Alert #7, 3/7/19
  • Health Department Announces Expansion of HIV Prevention Services for Young People, NYCDOHMH Press Release, 4/10/19
  • HIV/AIDS Bi-Weekly Update, Bureau of HIV/AIDS Prevention & Control, NYCDOHMH, 4/10/19
  • Consumers Committee March 2019 Meeting Evaluation Results
  • Consumers Committee April 2019 Meeting Evaluation (to be completed)
  • 25 years of POZ: Empowering the HIV Community since 1994, POZ Magazine, April/May 2019
  • April 2019 Planning Council Meeting Calendar


Billy Fields, Consumers Committee Co-Chair, opened the meeting with member introductions and a reading of the Rules of Respectful Engagement, noting that Lisa Best, Co-Chair, who is unable to attend today’s meeting, but will be calling in, will be re-joining the Committee in May.  Billy Fields led the group in a moment of silence in honor of those who have passed and those who continue to endure in the struggle.  The minutes from March 19 were approved, with the addition of the Needs Assessment  Seriously Mentally Ill (SMI) Sub Committee under updates. Meeting materials were presented & reviewed.  It was noted that there are additional notes included on operating more effective CABs, which summarize the take away findings from a CAB roundtable and interactive exercise conducted at the National Ryan White conference in December 2018.  There are also articles regarding aging and physical activities which should prove informative as we move towards that discussion.  


There were no public comments.


Kalani Thaler, Evaluation Specialist introduced the eSHARE common demographics tip sheet, as well as the FAQs, which appear below:

1. Why does a client need to fill out an Intake Assessment for each program they are enrolled in? 

  1. Per functionality of eSHARE, each Ryan White Part A (RWPA) client needs to complete an Intake Assessment per program enrollment, so that services can be entered under that enrollment. Different RWPA programs also have different requirements in terms of questions asked. The Intake Assessment fulfills HRSA, Planning Council, Mayor’s Office and evaluation-related data fields while also helping the service provider to identify the needs of the client.  
  2. BHIV is actively working now on the architecture and specifications for a future information system (FIS) to replace eSHARE, and the teams on this project are examining how best to ensure necessary assessment data are available to program staff and to BHIV for reporting to planning bodies and funding entities, while avoiding unnecessary and too-frequent repetition for clients with multiple RWPA enrollments.  Other comments included:
  3. This data can also be used internally by programs for internal monitoring of service delivery and health disparities.  
  4. Has there been an analysis of possible cost savings used a streamlined revised intake system? 
  5. Can the revised questions be shared with the consumers committee for input before implementation at the user level?
  6. Given that most questions are quantitative as opposed to qualitative in nature, could the new system help inform the delivery of services at the agency level?  
  7. If most questions are collecting quantitative information, what are the benefits for consumers regarding the delivery of services?

2. Why are there no oral health questions on the assessment?  

a. This is a potential question-set addition for the future data system, and we will be assessing its priority going forward. There are also cases where RWPA programs are expected to conduct fuller assessments in a particular health area (e.g., nutritional assessments, for FNS), and those may be entered as services delivered, but are not required to be conducted using a uniform assessment tool for eSHARE entry. Oral health assessment is included in the Food and Nutrition Service Directive, which will result in new programs assessing oral health following the upcoming RFP.  However, to ensure referral to oral health services across RWPA funded services, the Integration of Care Committee will need to update the Master Service Directive to include referrals to oral health programs.  

3. How can providers be better trained to ask the questions on the Intake Assessment? 

a. We have a three-pronged approach to assist our providers, which includes eSHARE trainings (including service category-specific trainings), guidelines/tip sheets for how to collect particular types of data, such as the demographic questions, and continual TA on eSHARE, on program model implementation, and on evaluation/reporting requirements.  Even with these multiple resources and efforts, one of the challenges of routine program data collection is that agency staff turnover may lead to gaps in knowledge transfer, at least until new staff complete the available trainings and review the supplemental guidance/tip sheets. Comments included:

  • What can be done better/differently?  
  • With frequent staff turnover there are often gaps in ability/capacity to sensitively ask questions?  
  • If HIV does not discriminate, why are questions based on demographics? 
  • Questions should be re-ordered so that there is a more logical, patient-centric focus in the progression of questions.  

4. Why do we need to collect ‘sex & health’ questions (specifically, type of partners)? 

a. These are historical NYC DOHMH requirements, and we have recently reduced the number of sex behavior questions, as reflected in eSHARE screens and forms for newer or rebid programs. This is an area where we were aware of the need to cut down and have been working to get changes implemented in eSHARE. We continue to use the partner data to help us ascertain whether a client is a member of a priority population such as MSM, which may not be clear based on self-identified sexual orientation alone.  Comments included:

In the face of potential HIV criminalization, especially for questions regarding sexual contact, robust community feedback via the local NYC CAB resulted in these questions not being included in future MMP surveys.

5. How can we eliminate the disconnect between Intake and Services delivered? 

  1. The data collection is intended to inform service planning and referrals; the actual follow-up is up to the discretion of the direct service provider. 
  2. BHIV does develop and report on measures of whether services were delivered to meet the assessed needs (e.g., for housing, mental health, substance use, or food/nutrition services); results on such quality/performance indicators are shared with providers, and it is expected that providers will strive to match services/referrals to the identified client needs. However, sometimes a client may choose not to follow up on a referral for one reason or another.  

6. Can you address the validity of the Visual Analog Scale (VAS) and why it is considered a good tool to measure adherence?  

a. NYC DOHMH did not develop this tool, but we used available research to select this well-validated, single-item ART adherence measure  to replace much longer adherence questionnaires (e.g., as previously used in Care Coordination), and to capture each client’s own self-assessment of medicationtaking (specifically the proportion of ART medications they took as prescribed in the prior 4 weeks). For key outcome measures, we try not to re-invent the wheel; instead we use brief, validated tools whenever possible.  When we adopt an existing validated tool, we try not to make substantial changes to the wording, since doing so may reduce the validity and defeat the purpose. 

7. Is it possible to re-structure the question sections?  

a. The assessment is currently designed to start off with some less sensitive questions before getting into more sensitive topics.  For the future data system, we can take this specific re-organization suggestion (well-being before more sensitive topics) into account.   

 8. The Intake Assessment takes a long time to complete. Is having a long Intake Assessment effective?   

  1. We are streamlining the Assessments to reduce the number of questions that need to be answered. We have made some questions optional and eliminated others entirely. 
  2. The Intake Assessment (and Re-assessment) forms serve multiple essential RWPA purposes, including (but not limited to):

i.          helping providers to identify client needs and client resources, to be integrated into the service plan;   ii.             tracking of performance/quality measures (such as the match of services to assessed needs, as mentioned above); 

iii.        characterizing the populations served in RWPA and how that changes over time (for which we get frequent data requests, including from the Planning Council and the Mayor’s Office, e.g., regarding non-US-born individuals, individuals with disabilities, individuals who are members of priority populations, etc.);   iv.   assessing improvement in intermediate outcomes over time (e.g., increased food security, decreased symptoms of anxiety or depression, or substancerelated harm reduction); and  

                v.    reporting to funders and other external stakeholders (e.g., the annual Ryan White Services

Report [or RSR], the annual application to HRSA) on key indicators of population need and the complexities of service delivery, such as unstable housing, mental health issues, and Hepatitis C co-infection in the NYC HIV+ population and RWPA population specifically.

9. Why do we ask questions about incarceration?  

a. We understand and treat incarceration as a health-disparity variable, and our data do show some significant associations between incarceration history and poor HIV-related outcomes.  We continually track health disparities, and recognize incarceration as a root cause of negative health outcomes, and an important variable in that it is something that can (with political will and policy action) be changed.  Incarceration is a public health issue. There is also no other data source we can easily access that has incarceration data. If a client was incarcerated, regardless of whether those records are expunged or not, they will have had the experience of incarceration, which creates challenges in people’s lives and well-being. 

  1. There is unintended bias from provider/client – there is stigma attached to the questions we ask. There needs to be provider training to ask questions without offending. 

a. DOHMH offers provider trainings, TA and written guidance on cultural competency, traumainformed care, motivational interviewing, and asking questions in a nonjudgmental fashion, as well as offering the previously mentioned tip sheets and eSHARE training and TA. 

  1. How can consumers give feedback on the new system? 

a. There is an expectation of engagement of end users (e.g., service providers) in feedback on the new system (FIS).  We will continue to engage consumers who are not direct data/reporting system users, and this process is starting right now, in terms of the documentation of consumer feedback on the assessments and the communication of these points to members of the FIS working groups (which are convening every week).  

  1. Can we amend the disability questions in eSHARE to better assess disabilities? 
    1. The current disability questions in eSHARE were included as a HRSA requirement. We may want to advocate with HRSA to make changes to their required questions, but we will want to be sure we continue to use validated tools.  
    1. HRSA adopted the disability questions from the American Community Survey.   


Dr. Angela Aidala of the CHAIN Project, introduced the project by referencing the uniqueness of legislatively mandated HIV/AIDS community input, involvement and engagement. CHAIN reports (accessible through the website) which are generated by DOHMH and community request, are used for funding applications and to capture the experiences of PLWH, especially with respect to the need for and access to supportive services. Those who receive their HIV care from private providers are not included in the cohort.  

Darryl Wong introduced the 4 domains of the consumers’ nine (9) recommendations from the Consumer Solar System Quality Improvement Project.  The Committee is seeking data to support, correlate or help illustrate the need for consumer-centric recommendations, ranging from access to mental health/substance use screening and assessment, co-morbidities and continuity of care, patient/provider interaction and family/peer support.  This request has been shared with Dr. Peter Messeri, co-principal investigator.      


  • The Needs Assessment Committee is working on developing recommendations for the disability community.
  • The Integration of Care committee will be meeting with Short Term Housing providers to discuss possible changes to the service model to better meet the needs of those accessing this service. 
  • The Oral Health SubCommittee of the Needs Assessment Committee has been meeting regularly, continuing to consult with national oral health care experts in order to identify the fiscal and clinical barriers to establishing expanded Oral Health services in NYC. 
  • The newly-established Mental Health SubCommittee of the Needs Assessment Committee will be meeting to discuss the needs of the Seriously Mentally Ill living with HIV/AIDS. 
  • The Priority Setting/Resource Allocation Committee reviewed and discussed service category fact sheets along with program scorecards.  The re-programmming plan was approved and funds will first be directed to the Tri County region, followed by the NYC region. 
  • The ADAP program is now known as the Uninsured Care Program and has changed its eligibility standards with no liquid assets test or 500% of FPL (62K annual earnings).
  • At the Tri County Steering Committee, the reprogramming plan, as described above in the PSRA update, was approved.  A review of the fact sheets was also completed.  


       There were no follow up items to be addressed.   


      There being no new business, the meeting was adjourned at 3:30PM.