HIV/AIDS Bureau - Outreach: Engaging People in HIV Care

Participants at an April 2005 HRSA/HAB sponsored consultation on engaging people in HIV care generated a wide range of ideas for future directions in engaging people in care—research, policy, and program operations. Overlap exists among some categories, such as the research recommendation to investigate effective outreach models and the parallel program recommendation to create outreach protocols. Notably, recommendations do not reflect formal consensus positions of participants but are rather common themes and specific ideas that emerged from the consultation.

Defining the Out-of-Care. Continued efforts to define the out-of-care and in care should be carried out to: determine whether people are being reached; direct resources to areas of higher need; and monitor and demonstrate outcomes. Defining care status is also critical to developing cost estimates of intervention strategies (see cost recommendation, below).

Reasons for Engagement in Care. Investigations to learn about effective ways to engage people in HIV care might focus on multiple areas of interest, such as:

Client Factors. Research on characteristics of clients who access services and navigate the system versus those not accessing care might assist with design of interventions. Factors might include: health beliefs and health literacy; stage of illness upon diagnosis and at care entry; and variations in retention for clients in and out-of-care for different time periods (e.g., six months or more compared to shorter periods).

Interventions. Various services/interventions might prove particularly effective in engaging people in care. Research might examine the benchmark number of visits that contribute to clients staying in care; and ways to prepare clients for readiness for care and stages of change. In addition, research on use of motivational interviewing and other cognitive behavioral interventions with hard-to-reach populations could help in the development of future interventions with out-of-care populations.

System Integration. Model ways to better deliver services for the benefit of clients might include examining linkages between counseling and testing, CARE Act, and substance abuse/mental health programs. Research questions might include: what linkages exist, what is the efficacy of linkages, what factors facilitate client entry into care, and how are personnel used across systems to facilitate linkages (such as coordination of multiple case managers across systems to avoid overlaps and confusion)? Methods for information exchange to locate clients and to follow them through the service system might also be explored.

Costs. The costs and benefits of interventions that engage people in care should be calculated in order to define the most cost-effective models, guide policy decisions on the commitment of resources, and clarify outcome measures that define success. In particular is the development of cost estimates/cost models for the resource-intensive work required to bring various types of clients into care—from the newly-diagnosed to those with complex and multiple co-morbidities, who are very hard to reach.

Over time, both HRSA and CDC have evolved policy and program guidance in grant announcements to Federal grantees on the conduct of outreach. Emerging understanding about the complexities of outreach and successful engagement strategies should guide the agencies in defining outreach approaches and priorities. Below are a number of observations about potential policy directions for consideration in legislative, program guidance, or policy.

Overall. CDC and HRSA have a shared responsibility for linking HIV-infected persons to care. Continuation of existing collaborative efforts will help ensure a more coordinated approach to engaging more individuals with HIV into care.

Planning. CARE Act and CDC community planning groups should enhance coordination of planning in examining the needs of clients not in care and subsequent prioritization and programming on priority populations for retention in care efforts.

Prioritization of Engagement Work. Consideration should be given to rethinking CARE Act outreach policy and putting more emphasis on those who fall out of care/are at highest risk of falling out of care. This is in contrast to those who never entered care or are most reticent to entering care. This change in policy emphasis, if adopted, can be communicated to grantees via policy, program guidance, and work with Federal project officers. On a community level, consideration should be given to gaining input, locally through needs assessment efforts, to confirm if outreach-related work should refocus in this manner.

Quality Management and Evaluation. Federal programs should develop quality indicators/use indicators (or use and refine, as necessary, those already in place) to measure engagement and retention in care. Measures might assess, for example, missed visits, waiting times, and clinic accessibility. Additionally, outcome measures beyond clinical measures should be utilized in evaluating the efficacy of engagement activities. Quality management funding might be provided to subcontractors to develop retention performance measures, rather than retaining quality management activities at the Title I and II grantee level.

Programs that engage people in care can, and should, be tailored to specific populations and service areas. Regardless, a series of features, outlined below, appear to play a positive role in helping engage clients in care, of which a number were specifically highlighted by participants as recommendations for future programs.

Readiness for Care Models. These would be similar in design to “treatment” readiness methods. Such interventions might entail steps to take in working with clients to get them ready to more fully engage in care. Key steps include, for example: initial assessment of client needs/issues; work with clients on immediate needs, with progressive work toward client engagement; education of clients about their HIV disease and care needs (health literacy training); and monitoring of clients to track progress and receipt of care. Additional components should be determined through the design of readiness to care models.

Professionalize Outreach. Evidence-based methods for conducting outreach need to be identified and protocols need to be developed so that outreach work can transition to becoming a more professionally-driven activity. In part, this reflects the evolution of outreach, and populations most impacted, since the beginning of the epidemic. Outreach has evolved to become more focused on linking clients to care. This includes CDC-funded outreach that has evolved from earlier outreach that focused on health education and risk reduction to more attention to engagement in care. A number of approaches should be examined in development of these outreach protocols, such as those currently used and those under development by consultation attendees. Examples include transition case managers, retention coordinators, and the health systems navigation model.

Develop Provider Skills. Multiple steps can enhance clinician and other provider awareness of what it takes to engage and retain clients in care. An initial activity is to educate clinicians and other provider staff on the support that engagement work can provide to them in serving complex clients.

Beyond this is skills development for providers to enhance their work with clients. Among the areas for education: understanding client issues; being nonjudgmental; willingness to work with complex clients; tailoring of care; motivational interviewing; making linkages with agencies; and enhanced follow-up (tracking) of patients to ensure receipt of care. Additional recommendations involve the need to collaborate with non-medical staff (e.g., health promoters, retention care coordinators) and accept them as patient supporters; and to utilize appropriate staff and volunteers (those able to connect with clients based upon language, culture, and receptivity to clients).

Operationalize Engagement Strategies. Given the success of programs outlined in this report in reaching and/or retaining clients in care, Ryan White CARE Act grantees should be encouraged to examine their existing operations and consider incorporating them into their outreach-related work, although considerations such as costs should also be factored in as changes are made.

HRSA/HAB might further develop expectations regarding engagement, and perhaps, revise guidance to ask about activities such as: identification of priority populations for engagement based on the continuum of care; linkages with counseling and testing sites and methods to facilitate entry into care; and assessment of source of referrals.

The following observations cover ideas about how to make outreach-related work function more effectively across an area and among multiple providers.

Health Systems Navigation. Cross-agency and cross-system planning and development requires resources—staff time and dollars. Funding should be directed to areas for capacity building to develop partnerships and integrate systems to improve engagement in care. Benefits of bringing together multiple agencies serving the out-of-care include: understanding the multiple entry points into the system; identifying opportunities to reach clients along different entry points; and enhancing referral-making and tracking. Yet another is facilitating understanding and developing common terminology for personnel and activities to engage clients in care.

Collaborations with Corrections. Improved coordination between Ryan White CARE Act programs and directors of state departments of corrections can enhance delivery of HIV care to inmates moving from incarceration to the community. Pre-discharge planning and transitional case management is demonstrated to facilitate ex-prisoners continuity and retention in care.

Referrals. To ensure that clients get needed services leading up to and including entry into care, programs need to monitor clients and track referrals to assess whether services were received and clients engaged in care. This includes staff attention to collection and reporting of data.

The provision of technical assistance for CARE Act grantees can take such forms as publications, best practices, conference calls and individualized assistance.

Clinic Assessment. Tools for self-assessment would assist clinics/provider sites in assessing and enhancing their accessibility and client-friendliness. Components might include: examination of clinic operations and physical space; phone times and follow-up call coverage; waiting times; and appointments missed. This might include development of a TA guide on doing a self-assessment, much like existing self assessment modules developed by HRSA/HAB. CDC has developed tools for patient flow analyses within reproductive health clinics, which could be of use and adapted to HIV clinics.

Best Practices. A manual on best practices to engaging clients in care could outline the “how to” of implementing a program. This might also involve sharing of information/tools currently in use by programs, including tools developed by CDC for its social networking programs, such as a procedural manual, implementation template, database manual, and network strategy session tool.

Provider Training. In addition to the provider skills development described above, other provider training needs include how to engage complex clients; understanding the benefits of extra measures to engage clients in care; health systems navigation; motivational interviewing; and linkages among agencies and staff (especially outreach workers and transitional case managers/retention coordinators linked to case managers and medical providers).

Quality Management. Grantees should be assisted in development and measurement of retention indicators.

Referrals. HRSA and CDC should both provide TA to grantees to enhance referrals and tracking of referrals to ensure that individuals get needed care. Notably, new CDC program guidance identifies HIV medical care, evaluation, and treatment as referral service types. It also requires HIV counseling and testing programs to indicate the type of HIV tests being performed, their results, and the type of referrals provided to clients and their outcomes, particularly whether clients were successfully linked to services.

Ryan White CARE Act programs have had limited success reaching individuals who have never had contact with the care system but do better in retaining clients in care, according to outreach programs.. What does this say about where Ryan White CARE Act and CDC outreach programs should focus their resources: on reaching those never before in care or retaining people already there?

Ryan White CARE Act agencies would do well, at a minimum, to place more focus on retention work. This will require agencies to develop systems to document missed appointments and client receipt of services. At a minimum, grantees should begin to develop indicators to track retention. Activities can be undertaken that don’t require much funding, such as: measuring waiting times; assessing phone coverage and return calls; and conducting an assessment of the physical facility for client comfort, accessibility, etc.