Consumers Committee Meeting Minutes February 19, 2019


LGBT Center, 208 West 13th Street, Rm 101, NY, NY Conference Call Info: 1-866-213-1863, Access Code 3587454#
Tuesday, February 19, 2019, 1:00PM – 3:00PM

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

Randall Bruce, Paul Carr, Maria Diaz (Co-Chair, Tri County Steering Committee), Charmaine Graham,  Ron Joyner, Justin LiGreci, Monique Mackey, Jesus Maldonado, Malaya Manacop, John Schoepp 

Planning Council Members Absent: Lisa Best (Co-Chair), Atif Abdul-Haaq, Asia Betancourt, Rose


NYCDOHMH:  Jose Colon-Berdecia, Jan Carl Park, Darryl Wong  Others: David Martin, Leonardo Ruiz, Rob Walker 


  • Current Meeting Agenda & Minutes of January 15, 2019 meeting
  • Consumers’ comments (July 2018) in response to HRSA RFI (Request for Information) on Administrative Streamlining & Burden Reduction – Client Assessment Experiences from NY EMA
  • Ryan White Part A Intake Assessment – Care Coordination (CCR)
  • Ryan White Part A Re-assessment – Care Coordination 
  • E-share Assessment Forms, presented by Kalani Thaler, Care & Treatment Program, BHAPC, 2/18/19
  • Bulleted highlights from Mental Health, Older Adults with HIV, Trauma Exposure research & literature
  • HIV/AIDS Bi-Weekly Update, NYDOHMH, Bureau of HIV, 2/13/19
  • Consumers Committee January 2019 Meeting Evaluation (completed) & February 2019 Meeting Evaluation (to be completed)
  • February & March 2019 Planning Council meeting calendars


Billy Fields, Consumers Committee Co-Chair, opened the meeting with member introductions, noting that Lisa Best, Co-Chair, is ill and unable to attend the meeting.  Ron Joyner, community member, led the group in a moment of silence in honor of those who have passed and those who endure in the struggle.  The minutes from January 15 were approved as presented and meeting materials were presented & reviewed. 


It was announced that Hector Xtravaganza, a prominent member of the House Ball Community and recent honoree at the 2018 World AIDS Day commemoration, passed away recently. A memorial will be held at the Schomburg Center. 


Darryl Wong presented the bulleted highlights from mental health and substance use research.The next domain to be reviewed is in the provider domain, which encompasses patient/provider communication, continuity of care and co-morbidities.  Consumers are invited to review the assembled literature at their leisure and to submit their comments to the QI Subcommittee for inclusion in the highlights


Darryl Wong provided some historical background by referencing numerous concerns voiced by Part A clients: right to privacy, uncertainty about what past substance use history has to do with client’s current needs, including homelessness and food insecurity, lack of regard for clients’ feelings and emotional reactions to invasive questions, excessive volume of mental health related questions as a pre-requisite for receiving services, lack of training on behalf of case managers in performing intakes, questions that are intrusive and may be intrusive to new clients, unnecessary questions on behavioral risk, e.g., number of sex partners, and re-traumatization as a result of repeatedly recounting early traumatic experiences.

In response to the consumers’ concerns, as noted above, regarding the Part A Client Assessment process, Kalani Thaler and Amber Casey of the NYCDOHMH Care & Treatment Program presented on the program’s e-share Assessment forms used for client intake for Part A services.  

What is e-share: Electronic System for HIV/AIDS Reporting & Evaluation

  • Primary data system for contracts with the Bureau of HIV/AIDS, including Ryan White Part A (RWPA) contracts
  • Meets all regulatory and reporting requirements for federal funders and local evaluation
  • Captures demographics, enrollments, services (individual and group), referrals, assessments and outcome measures over time
  • Data are routinely matched to the HIV Surveillance Registry for complete laboratory test data (CD4 and viral loads)

      FORMS: Which forms are completed with clients?

  • Common demographics: 

o Tracking populations and unique individuals served 

o Monitoring  disparities in age, gender identity, race/ethnicity, ZIP code, etc.  This is required for all clients in Eshare. 

  • Service Category Enrollment: One client can have multiple enrollments at a time, in different programs
  • Intake Assessment: Assessing client status/needs at baseline (at enrollment). Required for each enrollment in a Ryan White program
    • Re-Assessment – Assessing client status/needs as they change over time. Expected every 6 months, as an update to information entered on the Intake Assessment
    • Services Delivered- Documenting services for payment, accountability and quality management. Records the specific services delivered  
    • Primary Care Status Measures (PCSM) – Assessing HIV-related outcomes and continuum of care. Tracks primary care, HIV clinical health, anti-retroviral therapy (ART) prescription status, AIDS diagnosis status.  A baseline is determined at Intake Assessment and PCSM are expected to drive services with clients to help them problem solve barriers to care and adherence to ART.

         TOPICS: What kind of information do we collect?

                  Intake Assessment & Reassessment

   § Clinical Information, Client Information, Insurance Information, Income Information, Substance Use Information.  Sex & Health, General Health & Well-Being, Disability, Food and Nutrition, Living Arrangement/Housing Information, Correctional/incarceration information, Gender and Sexual Identity (Reassessment only as a reminder to update these fields in the Common Demographics, if necessary).

  • Intake Assessment:
  • § Client history includes: HIV/AIDS history, Primary Care Physician/ HIV Primary Care, CD4 history, Viral Load history, Hospitalizations/Emergency Department visits, Other medical conditions, Hepatitis C information, Mental health diagnosis, Pregnancy (if applicable), ART prescription and adherence, Number in household and income, Education level, Employment status, Primary/secondary language, Insurance status and type(s)
  • Substance Use & Behavioral Health: Use of prescriptions, injectables, and other substances, TICS, Two-Item Conjoint Screen, a  brief measure designed to detect current problems with alcohol and/or drug use. It is not meant to identify history of substance use or assess risk of future use. [These questions are specific to care coordination programs (CCR and MCM)]; TCUDS screening tool, Texas Christian University Drug Screen, screens for mild to severe substance use disorder, and is particularly useful when determining placement and level of care in treatment. Only used by harm reduction and mental health programs (HRM and MHV); overdose questions, injection drug use practices, behavioral risk questions (there are two sets of behavioral risk questions. The Care & Treatment Program is implementing a new set of questions for programs that are getting updates to their assessments, PHQ-4 (4-item questionnaire for anxiety and depression); Quality of Life Questions, Disability questions, Food and Nutrition questions [The food and nutrition programs (FNS and FBM) have questions that are specific to their program. Questions about personal weight/height are captured on FNS/FBM forms, other programs ask primarily about food insecurity].
  • General Well-Being: Housing assistance, current living/housing situation, history of homelessness, current housing issues (this is required of Transitional Care Coordination clients only), correctional/incarceration information

    Re- Assessment: Reassessment allows programs to evaluation client progress and allows NYCDOHMH to measure progress with clients within and across service models.  Reassessments are often used to get at improvement in the intermediate outcomes (like mental health, housing, food security) that a program is meant to target.  The Care & Treatment

Program uses housing status all the time, and — depending on who is asking and why — we need to make a decision as to whether to use baseline housing status (at enrollment) or most recent status, or some measure of change over time (going from less to more stable).

  • Client History : Primary Care Physician/ HIV Primary Care, Hospitalizations/Emergency Department visits, New other medical conditions, Hepatitis C information, New mental health diagnosis, Pregnancy (if applicable), Employment status, Insurance status and type(s),Household income
  • Substance Use & Behavioral Health: Use of prescriptions, injectables, and other substances

TICS (Two-Item Conjoint Screen), TCUDS screening tool, Overdose questions, Injection drug use practices, Behavioral risk questions, PHQ-4 (4-item questionnaire for anxiety and depression), Quality of Life Questions, Disability questions, Food and Nutrition questions

  • General Well-Being: Housing assistance, Current living/housing situation, History of homelessness, Current housing issues, Household number, Correctional / incarceration information

RATIONALE: Why do we collect this information? 

  • Outcomes reports by service category and overall, for outcomes reports by service category and overall – includes NYCDOHMH requirements; the sex risk questions are an example of this
  • Service category-specific evaluations and performance monitoring  o Eligible Metropolitan Area’s Integrated HIV Prevention and Care Plan,  o Measuring compliance with Planning Council guidance (monitoring implementation of service standards to determine payability or determine contractual compliance)
  • Ryan White Grant Application  o HRSA Reporting Requirements

INPUTS: Who and what influences the changes?

  • HRSA: Required demographic information, required insurance/payer information. Provides data elements we must include, e.g., disability questions. There are also some data needs for the annual Ryan White HIV/AIDS Program Services Report (RSR)
  • Data Utilization: Simplifying details and questions asked. Removing certain detail (ex. hosp/ed visits, insurance details) that don’t necessarily help us with evaluating RW service models; Reviewing data collected to eliminate questions that are under-utilized; we review our own reports (at least in an informal sense) to determine what data we have or have not utilized in our reporting and eval or QM
  • Providers and Consumers: Feedback regarding usefulness of forms (adherence assessments), concerns of data entry burden, client feedback on eSHARE assessments 
  • Service Directives: Meeting the goals of a new service model, Aligning with standards of care,

e.g., in the new CCR model there is interest in gathering data for those clients that are coinfected with Hepatitis C, so 3 new questions were added to the assessment forms

PURPOSE – Who do we share information with?

  • Funded service providers
  • HRSA 
  • CDC 
  • Planning Council: examples of Planning Council data requests include  o Service Utilization among Transgender Women Enrolled and Served in NYC Ryan White Part

A Programs in Calendar Year 2017  o Disability in Ryan White Part A – the number/percentage of clients who identify as having 1 or more disabilities and their viral load status

o Estimate of HIV-HCV Co-infection- the number of Ryan White Part A clients who have Hepatitis C.

  • NYCDOHMH Commissioner of Health & Mayor’s Office 
  • DOHMH staff 
  • National & International audiences, 


  • eSHARE is the primary data system for RWPA funded contracts
  • The Intake Assessment allows us to establish a baseline for all individuals receiving RWPA services (to understand where each client started)
  • The Reassessment collects periodic updates to the Intake Assessment (to show progress and ongoing needs)
  • Information collected on assessment forms allow us to evaluate programs, monitor  performance, and report to our external partners
  • We are making ongoing efforts to streamline our assessments, while still measuring what we need for planning, evaluation, quality improvement, reporting


  • Given client sensitivity, the NYCDOHMH no longer asks the number of sexual partners
    • What is the value of asking whether someone has had sex in the last six (6) months and/or their gender?
    • The client is not routinely given the option or is not aware that while questions are required to be asked, clients may refuse or decline answering questions on individual behavioral risks
    • Extensive training of case managers/care coordinators is necessary to be able to successfully probe into client’s behavioral history
    • Hep C training has not been uniformly implemented
    • Terminology regarding asexuality/pansexuality is not clear to all   
    • Mental health questions regarding diagnosis, i.e., depression, anxiety, etc, should be delivered with greater sensitivity; consider asking “How do you feel today or How have you been feeling?”
    • Is there a reason that the PHQ-4 (Patient Health Questionnaire) asks about mental health symptoms over a two (2) week period vs the McGill Quality of Life Question which focuses on the past two (2) days?
    • Current medication regimen information is no longer collected.  The Visual Analog Scale (VAS) is used to visually represent the amount of prescribed HIV medication taken by the patient, ranging from 0% to 100%. Concerns about multi drug/pill regimens and how to report/document in the assessment
    • Frequency of primary care visits can be extended to every 6 months or even once per year without being considered out of care; 90 days between visits may be an old paradigm  
    • Start and end date of insurance is no longer asked
    • Substance use question on method of use has been eliminated; a few substances have been removed from the question
    • There is no distinction between injecting illegal drugs and steroids and other medications
    • In depth housing history is not collected unless appropriate (client is enrolled in housing program)
    • Given program & legal (HIPPA) constraints, can info on e-share be synced so that it is performed only once, even if the client is enrolled in multiple programs? [In the future, clients may be able to allow other providers to access information from the primary provider] 
    • There are no questions in the intake about oral health, except for Oral Health Services in Tri County
    • There is a disconnect between the intake process and getting connected to needed services     Why do we need to know about arrest/incarceration history, esp for non-violent arrests?     A tip sheet is being revised for sexual orientation questions
    • From a cost/benefit perspective, what is the cost of completing assessments? How can this process be more efficient?
    • Many of the optional questions from previous versions have been removed
    • What is the rationale behind the is variance in the timeframes cited in questions: 30 days, one month 3 months, 6 months or one year?
    • Some of these questions can lead to un-intended biases – stigma may be related to each question asked and should be approached with sensitivity
    • Why do the questions re: Hep C appear so early in the assessment/re-assessment?
    • It is unclear why the questions regarding Hep C testing and infection are limited to the last 12 months; a client may have been tested and treated over 12 months ago but this information would not appear in this history
    • Client feedback from client satisfaction surveys, via CABs, has been used in the development of these assessment instruments
    • It should be made clear that all data that is shared is in aggregate form and not client-level data
    • How frequently is re-assessment information & data compiled and made available to client and provider stakeholders?

The recipient, represented by Amber Casey, has committed to the consumers’ request for the recipient team to respond to the above concerns in a timely fashion, i.e., within the next month or two, as the assessment instrument is being modified. A follow-up discussion will be scheduled as soon as feasible.


  • The Integration of Care Committee has formed an Oral Health SubCommittee has been formed, led by Paul Carr & Carol Kunzel.  The Transgender/Non-Binary training is set for March 28.
  • The Needs Assessment Committee is continuing its review of data and services for PLWH with disabilities. At the last meeting a disability training was conducted by the Centers for Independent Living for PC members.  
  • With respect to the Priority Setting/Resource Allocation process, it was voted that any cuts (3.5%) will be mitigated by diverting the Planning Council ADAP allocation, thereby opening up the opportunity to address new/unmet needs. 
  • At the last Executive Committee, a resolution was passed to arrange for supplemental food and nutrition services through funded contractors, in order to mitigate the disruption by a continued Federal shutdown.  Fortunately, the shutdown ended and the receipt of March food stamps and TANF benefits were not affected. This is an example of how the Planning Council 
  • The Rules & Membership Committee has completed its work on the Memorandum of Understanding (MOU). 


Paul Carr reiterated his request to explore the service model of Emergency Financial Assistance, as it exists in the Tri County region, for New York City.  


Since the Planning Council/Consumers Committee cannot assign a member to attend PC related meetings, it was suggested that committee members stay engaged and attend as many Planning Council and Committee/Sub Committee meetings as possible and that participation not be limited to just a small group of consumers and the Consumer At Large. 


Ron Joyner expressed his satisfaction at being able to re-join the Consumers Committee, after a considerable hiatus.


The meeting was extended to 3:20PM. There being no further business, the meeting was adjourned.