NEEDS ASSESSMENT COMMITTEE

Transcription

1 Meeting of the NEEDS ASSESSMENT COMMITTEE Marcy Thompson & Amanda Lugg, Co-Chairs October 11, 2018, 10:00AM -12:00PM LGBT Center, 208 West 13 th Street, Room 301, New York, NY By Conference Call , Access Code # Members Present: Marcy Thompson (co-chair) Ashley Azor (grantee rep)jan Carl Park, Fay Barrett, Randall Bruce, Amber Casey, Micah Domingo, Billy Fields, Timothy Frasca, Guillermo Garcia-Goldwyn, Jennifer Irwin, Carol Kunzel (phone), John Schoepp, Mytri Singh, Robert Steptoe, Maiko Yomogida Members Absent: Paul Carr, Ron Joyner, Amanda Lugg (co-chair), Saul Reyes, Ruben Rios- Vergara, Janie Simmons NYC DOHMH/PHS Staff Present: Brittany Thorne, Jose Colon Berdicia, Nadine Alexander, Kate Penrose, David Klotz Materials Distributed: Meeting Agenda 7/19/18 Meeting Minutes Presentation: CHAIN Presentation: E-Share Presentation: Surveillance Data Calendar Welcome/Introductions/Moment of Silence/Public Comment/ Review of the Meeting Packet/Review of the Minutes: Co-Chair Marcy Thompson opened the meeting with introductions and led the committee in a moment of silence. Ms. Lawrence reviewed the meeting packet with the committee; the minutes were approved. Data Orientation Surveillance NYC providers and laboratories are required by state law to report HIV information to the health department Positive HIV test results, viral load and CD4 test results, and genotypes When we receive a report, we check to see if there is an existing match in our HIV Registry and if not then we assign the case for field investigation Field investigation: patient interview and chart review Data in the HIV Registry are used to guide service delivery and to ask for funding from the federal government to support HIV services in NYC Demographic variables Page 1

2 Gender, race/ethnicity, age, transmission risk, area-based poverty, residence (borough, neighborhood, ZIP code), country of birth ~20% unknown data for transmission risk (many likely MSM); also some incompleteness for country of birth Number of deaths and cause-for cause of death we report based on previous year Clinical variables New diagnoses, CD4/viral load results, genotypes, lab date and lab provider, acute infection, stage of disease Surveillance data are a mile wide and an inch deep Strengths Have entire population of diagnosed PLWH Low proportion (~7%) undiagnosed Good basic demographic data that tells us which subpopulations are most impacted by the HIV epidemic and trends over time Limitations Do not have complete information on mental health, incarceration, homelessness, detailed risk behavior It does not tell us why we have these clinical outcomes and disparities Data Release Dates Annual dissemination products on December 1st Annual report Standard slide sets Annual surveillance statistics tables Mid-year report around March-April 3 tables with new HIV diagnoses, new AIDS diagnoses, PLWH, and deaths by demographic group for NYC overall, among females, among males Data Request Process: Can compare mid-year numbers from one year to mid-year numbers of other years Submit a data request if website doesn t have what you need Minimum 2 weeks to complete If request is for NAC work: send request to Melanie If request is for non-nac work: send request to HIVReport@health.nyc.gov Include in your request: Intended use of data Time period Population Geographic area Variables and any breakdowns desired Data can be obtained up to last reporting year Get clinical data for your specific facility/patients: Care status reports (CSRs): Gives status of patients out of care for >6 months (follow-up needed, no follow-up needed In care or deceased, non-case) HIV Care Continuum Dashboards (CCDs): We generate reports for high-volume organizations/clinical institutions on linkage to care and viral suppression for their patient population Page 2

3 Do your own data query with EpiQuery You can search for your own data on HIV or other health issues Annual Report Gives a comprehensive snapshot of HIV epidemic Executive Summary: short description of contents, what s new, and highlights Table 3.1: key overall numbers broken down by demographic groups (5.1 and 6.1 are by gender) Core figures/tables: Geographic distribution of HIV, trends among children and transgender PLWH, acute infection, transmitted drug resistance, HIV care, deaths, survival among PLWH, care continuum Special survey results change each year Technical notes: the helpful fine print Standard Slide Set Gives a in-depth lookat specific topics of interest Care and clinical status of PLWH and HIV/AIDS in NYC SSS have broadest sweep of new diagnoses and clinical outcomes by demographic groups Key population SSS focus primarily on new diagnoses by gender, race/ethnicity, age, transmission risk, borough, country of birth, deaths Care continuum is the last slide New on 12/1/18 borough-specific SSS! Web Surveillance Tables Most useful for neighborhood-level data Repeatedly shows Table 3.1 of Annual report by very specific breakdowns (e.g. for males 0-12 years, black females, females who inject drugs) Also shows numbers for every neighborhood in NYC (e.g. Bedford-Stuyvesant- Crown Heights) Last 2 slides show rates (accounts for underlying population size) for each demographic group and by neighborhood *Note: Surveillance data does include veterans. Data Trivia answered in November Meeting Reminder Questions posed: What defines a testing facility? What makes a facility high volume? Can we have a side by side cheat sheet? (Melanie will put this together) e-share REU Key Functions Evaluate Ryan White Part A (RWPA) services Design and modify data systems Measure quality indicators Design, implement, and consult on survey and focus groups Assess barriers to services and/or optimal HIV outcomes Provide data for proposal/application processes Respond to data requests from a wide range of stakeholders Electronic System for HIV/AIDS Reporting & Evaluation Page 3

4 Primary data system for contracts with the BHIV, including Ryan White Part A (RWPA) funded 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 is routinely matched to the HIV Surveillance Registry for complete laboratory test data (CD4 and viral loads) Who controls the additional, non-required questions included in e-share? How is this data burden impacting clients? Ms. Alexander noted that data burden is of high concern. Most useful to look at active clients versus open and closed. Categories of Data and Examples Demographics Age Race/ethnicity Sex at birth and gender Country of birth Year of death Enrollments Date of enrollment Service category Agency Services Service and service details (assistance with making an appointment for healthcare, social, and/or housing services) Site of service delivery Socio-behavioral Mental Health Substance use Housing status Incarceration history Risk category Men who have sex with men (MSM) Injection drug use (IDU) Perinatal Heterosexual transmission Clinical Viral load Hospitalization Comorbidities Pregnancy status RWPA Enrollment Report Topics List Other tabular presentations in the report include data on: Client Demographics by Enrollment Status Service Category by Enrollment Status Page 4

5 HIV Status of Testing Clients by Service Category Priority Populations by Enrollment Status Priority Populations by Service Category and Enrollment Status Strengths of eshare Strengths Allows access to data from both NYC and the Tri-County RWPA-funded agencies Facilitates the de-duplication of clients across agencies and programs Improves data quality and completeness due to built-in controls/validations Designed specifically for BHIV funded programs Allows merged analyses of programmatic and HIV surveillance (or other) data Allows us to measure outcomes and needs Limitations of eshare Limitations Dependent on RWPA provider documentation and data entry Challenges with eshare infrastructure with multiple layers of development and administration Due to phased rollout, only goes back to 2012 for most of Part A (earlier years available for Care Coordination) Data Request Data request specifications: Period of interest (start and end date) Geographic location Rationale for request Deliverables (output tables, written report, PowerPoint Presentation) Must allow a minimum of 6 weeks from submission for the completion of a data request Ms. Alexander and Ms. Penrose noted that replacement of e-share is hopefully going to be phased out. Ms. Thompson suggested that e-share develop a working group to glean feedback from actual providers and ensure improvement of the program. Dr. Aidela noted that survey experts should also be included. CHAIN HIV Service Planning Questions What services do HIV+ persons need? Where do they go for care? What are their unmet needs/ service gaps? What populations are underserved? What works well, what doesn t work? What are any barriers or access issues? Where should we put our resources? The CHAIN Project Community Health Advisory & Information Network(CHAIN) Project Goals: To provide a profile of PLWH in New York City and the Tri-County Region Page 5

6 To assess the system of HIV care both health and social services from the perspective of people living with HIV/AIDS To report on unmet needs, service utilization trends, and outcomes to the Planning Council and its Committees Make research results available to the wider provider, consumer, and other stakeholder communities Collaborative Effort Interactive collaboration with multiple stakeholders PLWH, Providers, Planning Council & Committees, RW Grantee (NYC DOHMH), Public Health Solutions, Westchester DOH Input from committee presentations, community briefings, and Technical Review Team that oversees CHAIN Steps in the process: Define study questions Develop a research strategy Design data collection tools Analyze & report on research findings Define new study questions Re-evaluate strategy and tools History of CHAIN Planning Council initiative in 1993 as one of the Council s evaluation resources Contract with Columbia University Public Health CHAIN has recruited multiple cohorts of PLWH -NYC I ( , n=968, 8 rounds of interviews) -NYC II ( , n=1,012, 8 rounds of interviews) -NYC III (2015 present; focus on PLWH <40yrs old -Tri-County I ( , n=482) -Tri-County repeated cross-sectional interviews ( ; n=467; n of int=912) Over 15,000 over-time interviews with 4,216 PLWH Selecting CHAIN Participants Designed to enroll representative samples 1 st step: random selection of service sites from listing of all agencies serving HIV clients ) 2ndstep: agency staff help with random selection of clients Separate effort to locate and enroll PLWH out of care PLWH Network sampling, direct outreach Collect Information by Speaking with PLWH Comprehensive in-person 2hr+ interview Follow-up interviews approx. yearly Interviews in homes or agency settings Community-based interviewing team, many HIV+ $40 incentive for every interview + referral resource Strong community support with 80% -90% follow-up interview completion rate Page 6

7 Average 5.9 over-time interviews with participants Topics Covered Current health & mental health status Sociodemographicbackground Family life, housing, work, economic resources Sexual behaviors Outlook on life, stress, stigma Substance use behaviors Testing and entry into care experiences History of medical and social services Utilization of medical and social services Medication use and adherence Service needs, satisfaction with services, barriers Social networks, social support Quality of life Value of CHAIN -based probability sample -Patterns proportions we see in the sample can be used as estimates for the broader HIV+ population -Not just PLWH in care or receiving specific type of service -Study sample comparable to RW client base/ target population -flexible to address emerging issues -follow up with same persons -Over time data can show changes in needs as well as effects of services received -Can also show effects of system-wide interventions and funding and other policy changes Analyze & Report Work with Council committees & TRT to define topics Consult with stakeholders -What emerging issues should be investigated? -What subgroup comparisons? Prepare draft of reports and get feedback Disseminate final reports Over 200 reports freely available ( Multiple presentations to Council, committees, community groups (monthly or more often) Rapid response brief reports in response to Council or NA requests Types of Analyses Descriptive --rates, percentages, mapping, trends over time Analytical --Are there group differences? (beyond demographics) --Do certain models of care, interventions, or policies make a difference? Multivariate analyses considering the effects of many factors taken together --Can include individual (e.g. mental health), situational (e.g. currently homeless), service provider (e.g. medical home) characteristics Assessing the System of Care Page 7

8 Conduct studies to examine: Medical care, health, mental health, QOL outcomes for PLWH Trend data tracking change over time Individual factors associated with outcomes Service utilization associated with outcomes Systemic factors associated with outcomes Key resource for needs assessment Can show service system strengths and gaps Identify points of intervention for new/additional services Medical care, health, mental health, QOL outcomes for PLWH Usefulness of CHAIN CHAIN major source of evidence for EMA's application for RW funding -CHAIN data featured Core Medical Services Requirement Waiver Request CHAIN major source of evidence for Needs Assessment, Comprehensive Strategic Plan -Over 200 citations, referring to 15+ reports CHAIN reports used widely by providers to inform service planning, for grant applications, to support advocacy efforts -Example: HRSA for all justification -NY State Medicaid redesign to allow charges for supportive housing services Mr. Frasca repeated his request to address the needs of the seriously mentally ill population. Mr. Bruce noted that he must now fill out a form to prove that he is HIV+. Ms. Thorne of PHS will look into this. Public Comment No public comment. Page 8