Data-based Decision Making: Understanding, Assessing, and Using Data

Data-based Decision Making: Understanding, Assessing, and Using Data Slides for Module 10 Topic: Using Data for Decision Making

Using Data for Decision Making • PC/PB Members as Advocates and Planners • Using Data to Carry Out Legislative Responsibilities • Using Data to Identify and Address Health Disparities • Dealing with Data Gaps

Training Objectives Following the training, participants will be able to: • Describe and compare the PC/PB member roles of advocate and planner • Describe how the PC/PB uses data to carry out its responsibilities for priority setting, resource allocation, development of directives, and reallocations • Explain how PC/PBs use both quantitative and qualitative data in HIV community planning

Training Objectives (cont.) • Describe how the PC/PB uses data in developing and updating its Integrated HIV Prevention and Care Plan • Specify at least 4 types of data the PC/PB can use to identify and address health disparities • Identify a process the PC/PB can use to identify and deal with data gaps

PC/PB Members as Advocates and Planners • PC/PBs are deliberately diverse in their membership, representing many types of entities and affiliations and reflecting different population groups – and members need to play different roles at different times

Members as Advocates and Planners Members can be both: • advocates who represent their constituent subpopulation, agency or organization and not solely their individual needs or concerns, and • planners on behalf of all PLWH in the jurisdiction

Members as Advocates Members often come to the PC/PB as advocates: • Bring passion • Provide a voice for their own communities or for populations their organization serves • Also learn to advocate on behalf of other subpopulations that may not be represented in PC/PB deliberations

Members as Planners Members learn when/how to be planners: • Stay passionate and committed • Consider the entire community • Seek Win-Win versus Win-Lose • Listen to others • Come prepared—review data and reports; ask questions • Use data to make decisions—not “impassioned pleas” • Understand boundaries

Acting as an Advocate • In discussing service needs: call attention to the needs of a specific HIV group or subpopulation – one’s own community or another group that is not represented • During needs assessment: ensure that the needs of this group are studied and documented • During PSRA: support targeting of services to this group • During integrated/comprehensive planning: • Question assumptions • Ensure that factors important to the group are considered • Ask how plan addresses service access/quality for the group • During evaluation: provide the perspective of a consumer from that group

Acting as a Planner • In needs assessment and integrated/comprehensive planning: ensure that the needs of diverse PLWH communities are studied and documented • In decision making: • Consider the needs of all communities and PLWH populations in the service area • Prioritize needs and allocates resources to services based on sound needs assessment data and objective criteria, not personal experiences • Help prevent and manage conflict of interest – including one’s own and that of other members • Take responsibility for helping to ensure an equitable and methodologically sound decision making process

Quick Scenario A: Advocate or Planner Which situation below benefits from a PC/PB member serving as an advocate? Which needs the member to act as a planner? Why are the needed roles different? • Situation 1: The PSRA committee is planning consumer town halls. The committee wants to drop the town hall in Spanish this year because of interpreter costs, though 21% of PLWH in the EMA/TGA are Latino and many are immigrants. You are Latino. • Situation 2: Data indicate greatly decreased demand for primary medical care under RWHAP Part A. More PLWH are receiving services through health insurance purchased using Part B AIDS Drug Assistance Program (ADAP) of under Medicaid or private insurance. You are uninsured and receive you medical care through Part A and are afraid cutting allocations would make you change providers.

Using Data to Carry Out Legislative Responsibilities • Every planning decision made by a PC/PB benefits from the informed use of data—whether large data sets such as client utilization data or in-depth qualitative information such as the results of a focus group

Sound Data Use Practices for the PC/PB • Provide data presentations and discussions throughout the year, using consistent formats and terminology • Always allow for discussion during or immediately after data are presented • Always do some training along with the presentation • Develop and consistently follow a process to weigh, summarize, compare, and use data to reach decisions • Give organized opportunities for individual and research-based data to be presented before decision making • Have a policy and process to manage conflict of interest • Empower all members to use and help enforce a commitment to data-based decision making

Sound Data-Use Practices for PC/PB Members and Committee Members • Become familiar with all the data types and sources • Review both quantitative and qualitative data • Look for appropriate and timely data to answer specific questions • Begin by looking for the main findings—but don’t stop there • Always look at the data for subpopulations • Ask the right questions to assess data quality • Identify data gaps • Triangulate—and give most weight to the “best” data

Using Quantitative and Qualitative Data • Use quantitative data to identify issues • Use qualitative information to understand the issues betterExample: • Using quantitative data: Client utilization and characteristics data show that Latinas were much less likely to use mental health services last year than in prior years • Using qualitative data: A Latina focus group indicates that two bilingual clinical social workers left their jobs about a year ago and were replaced by staff who do not speak Spanish – and sometimes no interpreter is available

“Impassioned Pleas” • An “impassioned plea” is individual, usually emotional, advocacy in support of a particular service category or service model, based on personal experience rather than broader data, and is usually made just before the decision is being made • Individual experiences add important understanding of service needs and should be obtained through focus groups, town halls/public meetings and public comment periods before the decision making meeting • Many PC/PBs follow a sound practice of NOT introducing new information during decision making when there is no way to check it against other data

Quick Scenario B: Responding to an Impassioned Plea Your PC/PB has worked hard to understand service needs and gaps through PLWH and case manager surveys, focus groups, town halls, and review of program data. The data show a clear need for more substance abuse services to deal with the opioid crisis among PLWH. This will mean reducing funds for other needed services. At the allocations meeting, when the PSRA Committee recommends a cut in funding for utility assistance, one member makes an impassioned plea in opposition, saying that she and her two children could freeze to death next winter if funds are reduced. • How should the PC/PB respond? Why?

Using Data in PSRA • Begin the PSRA process with a data presentation summarizing data from various sources, including needs assessment, epi, service utilization and client characteristics data • Before or as part of the presentation, use a structured process to allow individuals and organizations (members and non-members) to speak about their concerns and needs

Using Data in PSRA (cont. 1) • If any data-related questions arise, arrange to answer them before or at the meeting where priorities and/or allocations are set • Review data on other funding streams • Have readily available: • Last year’s service priorities • Last year’s allocations and expenditures by service category—including over- and under-expenditures • Unit and per client costs by service category

Using Data in PSRA (cont. 2) • Prepare and discuss data by service category that summarizes: • Service needs and gaps, as identified through service category-based findings from needs assessment, service utilization and client characteristics data from the RSR • Overall service quality, as identified through HIV care continuum data for all RWHAP clients, CQM and other performance data, client feedback through CQM and needs assessment, the unmet need estimate, and summary monitoring data • Disparities in care, based on subpopulation-based analyses of service utilization, needs assessment data on service needs and gaps, and performance along the RWHAP HIV care continuum

Using Data in PSRA (cont. 3) • Review and, if needed, refine priorities, based on balanced review of: • Services identified as high priority by all PLWH and by other stakeholders/experts • Services identified as of special importance to particular subpopulations – where need is great even if percent with need may be small (such as child care, language services) • Actual use of services, overall and by subpopulation • What services are most needed by PLWH throughout the EMA or TGA, without regard to available funding

Using Data in PSRA (cont. 4) • Allocate resources, based on: • Service priorities you have just updated • Information on other funding sources that support each service • Prior year utilization and expenditures for each service category – plus any changes in demand/use during the current program year • Projections of number of PLWH who will need each service and cost per client per year or per unit of care • Added costs of implementing new service models or directives – for example, new strategies to reduce disparities

Quick Scenario C: Using Data in PSRA The PC/PB is facing a difficult challenge: how to adjust allocations under a “flat funding scenario” to support a new peer navigation model to improve service retention, adherence, and viral suppression for the growing number of young MSM of color. As the PSRA committee, discuss: • What data are likely to be most useful in helping your committee decide where and how to adjust other allocations? How might the recipient assist you? • How should your committee present these data and support decision making by the full PC/PB?

Using Data for Developing Directives • Develop directives prior to PSRA for inclusion in allocation decisions • Review and triangulate data describing service gaps, barriers, or disparities in care that need special recipient attention • Carefully consider in-depth information from focus groups, key informant interviews and group sessions with providers and other stakeholders • Be sure to consider: • Geographic areas – central city, suburbs, outlying counties • Service models – new or refined approaches • PLWH subpopulations – especially where disparities exist

Using Data for Developing Directives (cont.) • Develop directives to address needs revealed by data – for example: • Populations: Develop directives to require services appropriate for specific PLWH groups based on service utilization, client characteristics, and HIV care continuum data showing populations that are underserved or have low retention in care or viral suppression • Service model: Use CQM data showing good results for a new service model to direct expanded use of that model • Geographic area: Use utilization, focus group, and PLWH survey data on disparities in access to care to develop a directive requiring services to be offered in a specific area

Quick Scenario D: Developing Directives At a recent town hall meeting in a suburban part of your EMA/TGA, three women said that having young children is their greatest service barrier. They have no child care available. Even if they received bus tokens, the trip to their providers takes 1½-2 hours and 2 transfers – and there is no one to watch the children during their appointments. After discussion with the recipient, you determine that though the PC/PB allocates funds for both transportation and child care, not all subrecipients have access to these funds. • What additional information do you need? • What kind of directive might you recommend the PC/PB adopt to address this issue?

Using Data in HRSA/CDC Integrated HIV Prevention and Care Planning • Use all available types of data to set challenging but reasonable goals and objectives for the Plan • Use HIV care continuum and other performance measures and outcomes data to assess progress • Update the Plan with new epi data • Refine annual work plans based on new needs assessment, service utilization and client characteristics data

Using Data to Improve the System of Care • Become familiar with recent data likely to help answer questions about the current system of care: • Needs assessment findings on client needs and service participation, gaps, and barriers (from surveys, focus groups, or special studies) • Needs assessment data on services (from the provider inventory and profile of capacity/capability) • RSR data on client characteristics and service utilization • Recipient data on service expenditures by service category • Data on linkage, retention, and viral suppression from the HIV care continuum for RWHAP clients and subpopulations • CQM and other data on performance measures and outcomes • Data on other funding streams

Using Data to Improve the System of Care (cont.) • Make data review a work plan task for the committee responsible for care strategy/system of care • Discuss the data to identify changes needed in: • Service priorities • Allocation of funds • Directives • Standards of care • Work with the recipient on new or revised service models that address identified limitations • To assess improvements in the system of car, review data annually to identify changes in service utilization, disparities, performance and clinical measures

Quick Scenario E: Improving the System of Care Three years ago your PC/PB approved a directive to improve services for employed African and Latino immigrants through ensuring evening and weekend hours for medical care, case management, and mental health services, provided by subrecipients with appropriate language and cultural competence. Now the System of Care Committee has been asked to assess progress. • What existing data might help, if you can do appropriate analysis? How will you work with the recipient on this? • You are planning a new PLWH survey this year. How could it contribute to your assessment?

Using Data to Identify and Address Health Disparities • To help reduce HIV-related health disparities, PC/PBs need to obtain and appropriately use data about the service needs, resources, and experiences of different groups/subpopulations of PLWH

Using Data to Identify and Address Health Disparities: Point 1 Identifying and addressing HIV-related health disparities should be an integral part of implementing the PC/PB’s legislative responsibilities – for example: • Consider population-specific needs in setting priorities Example: PLWH who are parents of young children may be a small percent of clients, but a special study or focus group shows that they require child care to keep appointments – this service category needs high enough priority to ensure funding if other funding streams are not available

Using Data to Identify and Address Health Disparities: Point 2 • Address disparities through allocations Example: Providers report they are serving immigrants who speak less-frequently needed languages – funds need to be allocated for interpretation and translation in the absence of bilingual staff Example: CQM data indicate that male immigrants are missing appointments at a growing rate. These groups have a high rate of employment, and case managers point to the recent elimination of evening and weekend hours at several clinics due to funding cuts – allocations need to be adjusted to provide evening/weekend access

Using Data to Identify and Address Health Disparities: Point 3 • Develop directives to address disparities Example: Focus group and CQM data indicate that young MSM of color need case managers with special training and skills – a directive can require that subrecipients hire such staff Example: CQM data and results of a recent pilot project indicate that young MSM of color that receive peer navigator services keep appointments, adhere to medications, and have higher rates of viral suppression compared to other MSM of color – a directive (and allocations) can call for expansion of this model

Using Data to Identify and Address Health Disparities: Point 4 • Develop or refine services to increase access to and retention in care Example: Needs assessment data show that transgender PLWH face special barriers to care including stigma and negative responses from some service providers – the PC/PB may work with the recipient on development of a transgender-appropriate service model, and/or training for all subrecipients on serving this population – using allocations and directives to get these improvements implemented

Quick Scenario F:Identifying Health Disparities Your PC/PB has consistently looked at disparities in access to care and clinical outcomes for a small number of PLWH populations including young MSM of color and youth transitioning from adolescent to adult care. In the past 5 years, however, it has not systematically assessed disparities among PLWH populations. For example, it has not looked at disparities based on gender/gender identity or race/ethnicity, or disparities for populations with co-occurring conditions like homelessness, recent incarceration, mental health or substance use needs. Now it wants the System of Care Committee to do such an assessment, beginning with a review and perhaps re-analysis of existing data. • What data types and sources might be useful for such an effort? How might other stakeholder assist you? • How might you structure and manage this effort?

Dealing with Data Gaps • Filling data gaps by identifying, obtaining, and improving the quality of data is an ongoing challenge for PC/PBs and recipients

Data Gaps • No PC/PB has all the data needed for decision making • Data gaps are often caused by: • Limited resources • Limited needs assessment and data analysis skills and experience on the part of PC/PB and/or recipient staff • Lack of agreements with state surveillance staff to provide newer types of data • Limited time for data gathering or analysis, given other responsibilities • Lack of agreement between PC/PB and recipient regarding data needs and how best to meet them

Addressing Data Gaps • Become familiar with the various types of data that should be available to the PC/PB based on sound practice and RSA/HAB guidance • Have PC/PB leadership and staff work with the recipient to agree on what data the recipient will provide, in what formats, and on what schedule—and make it part of your MOU • Explore what data needs can be met by the PC/PB or its staff or consultants through needs assessment, town halls, roundtables, or other approaches

Addressing Data Gaps (cont.) • Maximize use of existing data through improved analysis • Make a chart showing needed data types, content, use, and current or potential sources • Agree with the recipient on what data it—or state or local surveillance staff—can provide in the next year • Agree on what data the PC/PB can obtain/collect in the next year • Develop a plan to fill remaining gaps • Explore what PC/PB members, service providers, or other stakeholders can provide • Seek help from area universities

Sum-Up • Data-based decision making is the foundation for effective planning by PC/PBs • The PC/PB and recipient share responsibility for ensuring the availability of needed data • PC/PB members should be prepared to act as both advocates and planners – always as good users of data • All PC/PB staff and committee members share responsibility for ongoing, informed use of data for decision making • Decisions should always consider both the needs of all PLWH and the needs of populations facing HIV-related disparities in service access and outcomes

Optional Slides for Activities

Instructions for Activity 10.8: Using Data for Decision Making • Work in a small group with a facilitator, recorder, and reporter • Assume you are the committee responsible for recommending to the full PC/PB an approach for addressing the situation in your assigned scenario • Prepare your approach, summarize on easel pad paper, and have your reporter prepared to present your work to the full group

Instructions for Activity 10.9: Dealing with Data Gaps • Work in pairs • Read the instructions and situation provided in the handout • Complete the worksheet describing how your committee would deal with this data gap situation • Be prepared to discuss your work with the full group

Data-based Decision Making: Understanding, Assessing, and Using Data