HRSA HIV/AIDS Bureau - HRSA Care Action - Positive Partners: Consumer Involvement in HIV Care

In June 1983, the Second National AIDS Forum was convened in Denver, Colorado. At the meeting, an Advisory Committee of People with AIDS drafted the “Denver Principles,” affirming the right of people living with HIV (PLWH) to actively participate in their own health care and to be involved at every level of decision making.1 Five of the 17 principles played a particularly important role in shaping HIV policies and programs in the United States. They stated that PLWH

The formation of local PLWH coalitions and the National Association of People with AIDS helped keep consumer involvement at the forefront of America’s response to the HIV epidemic. HIV service demonstration projects funded by private foundations and then Federal agencies during the middle to late 1980s strongly encouraged consumer participation in assessing service needs and planning for the delivery of coordinated health and support services.2 And the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act mandated PLWH representation on the HIV planning bodies that set priorities for the allocation of CARE Act funds.

Today, the benefits of PLHW involvement in their own care, in the care of others, and in meeting the challenges of planning and service delivery are undisputed. Active participation in treatment decisions encourages health-promoting behaviors and reduces behaviors that have serious health consequences for PLWH and their partners.³ In addition, HIV service organizations benefit by learning how service users view the effectiveness of their programs. Consumer involvement is essential to identifying which services and issues are most important to populations affected by the HIV epidemic. It is likewise essential for identifying gaps in services and for determining the most appropriate use of limited resources.

As service users, PLWH are well positioned to evaluate the quality, appropriateness, and effectiveness of funded services. In a 1998 report, the National Alliance of State and Territorial AIDS Directors summarized the contributions of PLWH as follows:

Consumer involvement has not just happened. It has resulted from concerted efforts by consumers themselves as well as by providers and grantees, among others.

Although great progress has been made, some HIV planning bodies still face significant challenges in ensuring the full participation of PLWH in service planning, policy making, and evaluation. Likewise, care providers and consumers face barriers to building a comprehensive approach that includes PLWH as full members of their planning and care team.

To date, little research has examined what PLWH want and need to know to make informed decisions about their health care or what effective strategies may be for building clinical decision-making partnerships.^5,6,7 Efforts to enhance PLWH involvement in personal health care decisions require further research and dialogue on the following questions:

To illuminate pathways to increasingly successful consumer involvement in all aspects of HIV care, the HIV/AIDS Bureau commissioned a report that would summarize the available literature as well as capture the depth of experience on the topic within the CARE Act community. The resulting document, created by Martha McKinney, is entitled Positive Partnerships: Consumer Involvement in Ryan White CARE Act Programs. It is based on a review of publications on consumer involvement in CARE Act programs along with interviews with key informants at local, State, and Federal levels. This article summarizes the report, which is available through the HRSA Clearinghouse at (888)ASK HRSA.

1. Paternalistic Model—The physician chooses the treatment without involving the patient in the decision-making process, and the patient passively acquiesces to professional authority.

2. Informed Model—The physician presents all relevant treatment options and their benefits and risks. The patient then deliberates and makes a treatment decision.

3. Shared Model—The physician and patient share all stages of the decision-making process.They exchange information, declare treatment preferences, and work to build consensus on the most appropriate treatment to implement.

PLWH Partnerships With HIV Health Services Planning Councils: A Case Study

The New Orleans Regional AIDS Planning Council (NORAPC) serves an Eligible Metropolitan Area (EMA) that includes the Orleans Parish and seven primarily rural parishes in southeastern Louisiana. Ten of NORAPC’s 31 voting members (32 percent) are people living with HIV (PLWH) who receive services from Title I-funded organizations but have no financial or governing interests in the organizations. NORAPC’s executive committee includes the chair and vice chair (both PLWH), six committee chairs (one PLWH), and an at-large member who has publicly disclosed his or her HIV serostatus. Three of the consumer members of the executive committee are graduates of a regional leadership training program sponsored by the National Association of People with AIDS.

NORAPC conducts its work through six standing committees:

Nominating and Bylaws

Community Coalition, which serves as the PLWH committee and manages the needs assessment process and recommends priority services for Title I funding

Allocations, which recommends how Title I funds should be allocated among priority services

Service Delivery, which reviews data on service capacity and utilization; develops standards of care

Medical Policy, which oversees primary care and medication utilization and expenditures

Continuous Quality Improvement, which works with the New Orleans Mayor'fs Office of Health Policy to develop and implement quality management activities and evaluate service outcomes.

All the committees are open to anyone in the EMA who wishes to join. Recent amendments to the NORAPC bylaws require at least two PLWH on every committee. At least 51 percent of the members serving on three committees (Community Coalition, Allocations, and Service Delivery) must have no financial or governing interests in Title I-funded service organizations.

In December 2001, the Nominating and Bylaws Committee and the Community Coalition jointly recruited PLWH to fill the seats of members whose terms had expired. To recruit African American consumers, the Nominating and Bylaws Committee ran radio spots on stations with largely African American listeners and placed advertisements in African American weekly publications. To recruit HIV-positive women, the committee sent letters to physicians and other HIV care providers requesting their help in distributing application forms to female patients. Community Coalition members carried business cards with the dates and times of NORAPC meetings, which they distributed to interested consumers. The targeted media campaign produced some unexpected benefits, which the NORAPC manager described as follows:

The media campaign was an incredible success. We received many applications for Planning Council membership. Because the ads gave the Planning Council’s meeting dates and times,we also increased community attendance at meetings. We received a ton of telephone calls from people asking about HIV testing and services, and we were able to connect these callers with the HIV hotline.

All new NORAPC members participate in a 4-hour orientation session, and new consumer members attend an additional orientation session 2 hours before the first meeting. At this special session, NORAPC staff present the day’s meeting agenda, discuss confidentiality and disclosure issues, and explain the consumer reimbursement policy.* Staff also describe the committee structure and encourage participation in the Community Coalition. Each new consumer member receives a copy of Getting Comfortable: Understanding the Ryan White CARE Act Planning Bodies, which offers tips for effective participation.**

The Community Coalition was organized in 1997 as a "safe place" to discuss issues before making recommendations to the full Planning Council. The monthly meetings are open to all interested persons, regardless of HIV serostatus; voting privileges are extended to people who attend three consecutive meetings. Current members include five NORAPC appointees (all consumers) and two PLWH from the community.

For several years, the committee reviewed and pretested needs assessment instruments, facilitated public meetings on HIV service needs, and provided general oversight for priority-setting and resource-allocation processes. Under NORAPC’s amended bylaws, the Community Coalition now has formal responsibility for designing needs assessment instruments, overseeing data collection processes, and analyzing needs assessment results and using the findings to recommend priority services for Title I funding. Upon receiving the Community Coalition’s priority ranking of services the Allocations Committee will recommend the amount of Title I funding that should be allocated to each service.

In 2001, the Community Coalition designed a grievance program for PLWH experiencing problems with service providers. The Mayor’s Office of Health Policy is supporting this program by hiring a consumer grievance advocate and requiring all Title I-funded service organizations to adopt the recommended grievance procedure.

In January 2002, the Community Coalition proposed new performance standards for peer support services in community-based organizations. An exploration of the high per-client cost of peer support had revealed that peer support workers were spending many hours helping PLWH document their eligibility for health and social services. Although this task was limiting the number of clients whom they could serve, it was not included in their job descriptions. The new performance standards include assisting with eligibility verification as one of the expected duties of peer support workers.

Through service on NORAPC committees and workgroups, PLWH have helped develop goals and objectives for a comprehensive HIV care plan, a system wide quality management program, and indicators for evaluating service outcomes. In addition, a committee consisting of a clinician, a pharmacist, a consumer, and an additional member (a service provider or consumer) reviews requests for Title I-funded assistance to PLWH who require HIV-related medications not covered by AIDS Drug Assistance Programs or Title I formularies. PLWH also represent NORAPC at statewide meetings of HIV care consortia.

* This policy authorizes taxi vouchers and reimbursement for transportation and child care.
** The AIDS Alliance for Children, Youth, and Families published this guide in 2001. Copies can be obtained by calling (888) 917-AIDS or visiting the AIDS Alliance’s Web site: http://www.aids-alliance.org.

The variety of approaches for promoting shared clinical decision making can be broadly segmented into four major mechanisms for informing and educating patients: (1) orientation programs, (2) individual and group educational sessions, (3) consumer education rooms and materials, and (4) patient newsletters. Examples of effective strategies are revealed in the following programs:

When filling paid and volunteer positions, HIV clinics and programs sometimes have difficulty recruiting PLWH who reflect the demographic diversity of the patient population, possess good communication and interpersonal skills, and are comfortable disclosing their HIV serostatus. To accommodate PLWH needs, some clinics and programs offer part-time employment for those for whom full-time work would be detrimental in terms of health or loss of current health benefits. Flexible job descriptions that can accommodate fluctuations in health and energy, opportunities for career advancement, and subsidies for transportation and child care also help attract applicants.

The authors of a study of PLWH involvement in Canadian AIDS service organizations note that HIV service providers sometimes avoid hiring PLWH because of stereotypical views:

Stereotypes can also prevent the participation of people who are essential to HIV planning bodies, which are required by statute to be reflective of the epidemic. For example, it is important that HIV-positive individuals with a history of mental illness or substance abuse be included as full participants in the planning process.

Some HIV clinics and programs hesitate to engage PLWH as paid or volunteer staff because of concerns about possible breaches in confidentiality. Key informants in the study emphasized the importance of requiring all staff and volunteers to attend training on procedures for protecting confidentiality and to sign confidentiality agreements. A consumer advocate urged service providers to "think outside the box" about ways of sharing confidential information with consumers who volunteer to help other PLWH. For example, in some HIV clinics, patients sign forms authorizing volunteer peer advocates to request the clinical information needed to establish eligibility for various entitlement programs.

The Denver Principles called for the involvement of PLWH at every level of decision making. Titles I and II of the CARE Act support this objective by requiring consumer participation in HIV Planning Councils and consortia and in statewide needs assessment and planning processes. Policies and guidelines for Titles III and IV require consumer involvement in all aspects of programming.

Many HIV clinics consult or partner with PLWH by establishing consumer advisory boards (CABs). Some clinics establish separate CABs on the basis of age and other demographics and characteristics (e.g., one for adults and one for youth ages 13 to 24). Other clinics invite HIV service providers and PLWH to serve on a community advisory board and create a separate CAB for patients.

CABs vary in membership size, composition, roles, and levels of autonomy. Some establish their own rules, guidelines, and meeting agendas, whereas others react to ideas presented by clinic staff. As "consultants," CAB members review and comment on draft brochures and educational materials, needs assessment tools, patient satisfaction surveys, grant applications, and research protocols that are under consideration. As "partners," they help develop those materials, tools, and protocols and evaluate outcomes.

Many HIV clinics and care networks provide opportunities for PLWH to develop and deliver services. Although volunteer positions are most common, HIV clinics increasingly are hiring consumers as outreach workers, peer educators, patient and peer advocates, case managers, and adherence counselors. At some sites, PLWH hold administrative positions. For example, both the Metrolina AIDS Project (Charlotte, NC) and the Whitman-Walker Clinic (Washington, DC) have executive directors who have publicly disclosed their HIV serostatus.

Sites assign various roles to peer educators and peer advocates. The tasks performed by peer educators and patient advocates at the CORE Center (Chicago, IL) illustrate the range of assignments. Each year, the CORE Center offers three 6-week training programs for PLWH interested in becoming peer educators. Over the 6-week period, PLWH participate in 15 hours of training on HIV disease and its treatment, risk reduction strategies, and effective public speaking. Graduates receive stipends to make public presentations on HIV prevention, help HIV counseling and testing staff with community outreach, meet with patients during clinic hours to answer questions, and staff the clinic’s consumer resource center.

The CORE Center uses Title IV and other resources for two full-time patient advocates, who orient new patients to the center, staff the patient advisory committee, publish a quarterly patient newsletter, administer patient satisfaction surveys, and serve as the first point of contact for patient grievances. As members of the clinic operations committee, they bring patient issues and concerns to the attention of the medical director, administrators, and multidisciplinary team leaders. They also serve on planning and special programmatic committees and provide support for consumer outreach and education.

The CARE Act mandates consumer participation in the planning, priority-setting, and policy-making processes of HIV Planning Councils and consortia. Title I requires each Planning Council’s membership to reflect the demographics of the local HIV population. The CARE Act Amendments of 2000 raise from 25 percent to 33 percent the proportion of the Planning Council that must consist of PLWH. Requirements for PLWH participation in HIV care consortia are less explicit; however, consortia must document consumer participation in needs assessment and planning processes when applying for Title II funds. Federal policy allows both HIV Planning Councils and consortia to use CARE Act funds to reimburse the travel, child care, and other meeting-related expenses of members requesting this assistance.

HIV planning bodies have the dual responsibilities of preparing new consumer members for Planning Council or consortium service and educating HIV-infected and -affected communities about planning body activities. Training programs for new consumer members typically begin with an orientation session covering the CARE Act, planning body structure and rules of conduct, and member roles and responsibilities. Ongoing training sessions explain the processes used to assess service needs, develop comprehensive service plans, set priorities for resource allocation, and evaluate the effectiveness of funded services. To help new consumer members become comfortable with discussion topics and parliamentary procedures, many planning bodies assign longer tenured PLWH to serve as mentors. Written and audiovisual educational materials help reinforce the information provided through training and mentoring programs.

HIV Planning Councils and consortia use a variety of strategies to obtain consumer input on service needs and funding priorities. They also support leadership roles for consumers. Many HIV planning bodies have adopted bylaws specifying the minimum number of PLWH that must be present to constitute a voting quorum. They support consumer participation by scheduling meetings at times and locations convenient for PLWH; reimbursing transportation, child care, and other meeting-related expenses; and allowing absentee or proxy votes when PLWH are too ill to attend. As additional supports, some HIV planning bodies offer healthy snacks or meals, schedule breaks with a place for PLWH to rest, and provide interpreters for members with limited English proficiency.

The CARE Act requires Title II grantees to periodically convene PLWH, representatives of all CARE Act Titles and Part F programs, HIV service providers, and public agency representatives to develop a Statewide Coordinated Statement of Need (SCSN). Using existing needs assessments conducted by CARE Act grantees and planning bodies, the SCSN workgroups identify broad goals, cross-cutting issues, and critical gaps in services that should be considered in statewide HIV planning. The CARE Act also mandates consumer involvement in developing a statewide comprehensive HIV services plan and reviewing the plan’s implementation.

Many organizations, including CARE Act grantees, planning bodies, providers, and HRSA, conduct or sponsor leader-ship development programs to help PLWH build the know-ledge and skills to advocate for themselves and others. CARE Act funds also support several national training initiatives. Some projects are implemented at the local level, such as the "Catch a Rising Star" collaboration in Albany, New York, involving the Albany Medical College AIDS Program and the Capital District African American Coalition on AIDS.The organizations work together to provide leadership training for African American and Hispanic women living with HIV disease. Funded by private sources, the program prepares HIV-positive women of color to serve on HIV planning bodies and advisory committees and to conduct community outreach.*

Other leadership development programs are statewide.In California, for example, the Asian and Pacific Islander Wellness Center and Project Inform, a nonprofit organization specializing in HIV treatment education, cosponsor a statewide Treatment Education Certification Program for PLWH involved in peer education and advocacy, HIV case managers, and other non-medical treatment adherence counselors.

Several consumer leadership development programs have been implemented at the national level. As the Federal agency responsible for administering the CARE Act, HRSA has provided financial support for a number of consumer leadership development initiatives.i Three national consumer leadership development initiatives currently receive CARE Act support:

Patients of clinics funded under the CARE Act are learning to advocate for themselves through education, counseling, and active involvement with the multidisciplinary teams that develop and implement their care plans. Consumers serve on clinic boards of directors and on key committees responsible for clinic operations, continuous quality improvement, and strategic planning. As CAB members, they review policies and programs and suggest ways of increasing service accessibility and improving service quality. Consumers also hold volunteer and staff positions within HIV clinics.

The new CARE Act requirement that 33 percent of HIV Planning Council members be consumers has given PLWH a significant presence on the councils. To encourage even broader consumer participation, many HIV Planning Councils and consortia have invited PLWH from outside their memberships to join committees, have organized consumer advisory groups, or have developed working relationships with independent PLWH caucuses. Consumers now chair or co-chair many HIV planning bodies and provide leadership for key committees.

At State and Federal levels, PLWH provide guidance on policies, legislation, programs, and standards of care through service on HIV advisory groups. As staff members and contractors for State and Federal HIV/AIDS programs, PLWH perform a variety of managerial, technical, and consultative roles. Consumers also serve on review committees for grants and contracts and participate in onsite assessments of grantee or contractor performance.

Although the CARE Act has greatly expanded opportunities for consumer participation, significant challenges remain. Efforts to enhance PLWH involvement in personal health care decisions need to be informed by more research and dialogue on factors affecting patients’ preferences for involvement and effective strategies for building clinical decision-making partnerships. CARE Act planning bodies and HIV clinics with consumer advisory groups could benefit from increased training and technical assistance on strategies for recruiting reflective and accountable consumer memberships, working with PLWH to define meaningful roles and responsibilities, and retaining consumer members. Additional support is needed for local, State, and national programs that develop consumers’ knowledge and skills to be effective leaders and advocates. “Positive partnerships” require new learning on the part of PLWH and service providers, mutual respect, and an ongoing commitment to shared decision making.

2. McKinney MM, Wieland MK, Bowen GS, Goosby EP, Marconi KM. States’ responses to Title II of the Ryan White CARE Act. Public Health Rep.1993;108:4-11.

3. Gerbert B, Love C, Caspers N, Linkins K, Burack JH. Making all the difference in the world: how physicians can help HIV-seropositive patients become more involved in their healthcare. AIDS Patient Care STDs.1999;13:29-39.

4. National Alliance of State and Territorial AIDS Directors. Participation of people living with HIV in state HIV care planning and programs: a review of state activities under Title II of the Ryan White CARE Act. Washington, DC: National Alliance of State and Territorial AIDS Directors;1998.

5. Catalan J, Brener N. Whose health is it? Views about decision-making and information-seeking from people with HIV infection and their professional careers. AIDS Care. 1994;6:349-56.

7. Marelich WD, Johnston Roberts K, Murphy DA, Callari T. HIV/AIDS patient involvement in antiretroviral treatment decisions. AIDS Care. 2002;14:17-26.

8. See Charles C, WhelanT. What do we mean by partnership in making decisions about treatment? BMJ.1999;319(7212):780-2.

9. Roy CM, Cain R. The involvement of people living with HIV/AIDS in community-based organizations: contributions and constraints. AIDS Care. 2001;13:421-32.

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