Consumer Participation in HIV Service Planning

Quarterly Contractors Meeting

May 12, 2010

Jennifer FlannaganADAP Operations Specialist

Virginia Department of Health804-864-7360

Jennifer.Flannagan@vdh.virginia.gov

Pamela WhitakerHIV Services Coordinator

Virginia Department of Health804-864-7219

Pamela.Whitaker@vdh.virginia.gov

Consumer Participation: Why?

Planning Bodies and Consortium Roles:- Ryan White Programs and the Planning process- A unique perspective

Health Resources & Services Administration legislation mandates that all planning bodies and consortia include people living with HIV/AIDS (PLWHA) be included in the following activities:– Needs assessment activities– Planning for services– Helping to identify and set service priorities– In some cases, assist with making allocation recommendations

for funding opportunities

Consumer Participation:Ryan White Programs

Consumers should be apart of or participate in all of the following areas/activities:

Planning Council members Subcommittee members Participants in council meetings Focus group participants or facilitators Outreach to consumers

Consortia membersADAP Advisory Group membersPublic Hearings

Roles of Consumers- Regular membership- Active participants in caucuses and committees- Participants in focus groups, support groups within the community

Consumer Participation: Benefits

For Consumers: Increased ability to participate in their own care, to care for their infected and affected family members, and/or to reach others in their community and engage them in care

For Grantees/Agencies: Increased ability to reach persons living with, affected by, or at risk for HIV and AIDS, and to engage them and keep them in care

Partnership: consumer participation strengthens the relationship between providers and clients which helps to promote engagement into care and adherence to treatment

Consumer Participation: How to Elicit and Increase Participation

Recognize Barriers to Recruitment- Lack of awareness of Care Act programs and planning bodies

- Lack of knowledge about how to get involved, including criteria for membership- Unclear roles, responsibilities, and expectations- Belief that PLWHA are not taken seriously

- Fear of disclosure of HIV status, sexual orientation, stigmas- Financial cost to participate (transportation issues)- Distrust of public programs and providers- Discomfort or lack of understanding of the complexity and formality of planning body procedures

Recruitment of PLWHA – Implement a formal Outreach and Recruitment

Process – Communicate expectations clearly and early

– Make the process efficient, timely, and worthwhile

– Ensure members reflect the demographics and current “faces” of HIV disease.

Consumer Participation: How to Elicit and Increase Participation

Consumer Participation: Sustaining Involvement

Recognize barriers to sustaining participation– Structure and Process

Bureaucratic processes, lack of demonstrated respect for PLWHA input

– Community Barriers Lack of commitment to meeting needs of PLWHA, discrimination

– Personal Barriers Poor health, competing family or personal demands on time and

resources

– Non-member involvement Representation of the entire consumer community, expectation to

“know everything”

Institute continuous processes that help maintain consumer participation– Orientation– Training– Mentoring– Relationship building– Access to Information– Financial Support or Incentives

Consumer Participation: Sustainment and Maintenance of Involvement

Consumer Participation:The Value of Consumers

Consumer Perspective. Consumers provide a critical perspective on Ryan White Program service planning, delivery, and evaluation. This occurs within a diverse consortium membership that provides a forum for participants to interact.

Reality Check. Consumers help keep programs and systems focused and on track by providing a first-hand perspective on issues facing them and their families. They can discuss their actual experiences in seeking and obtaining services.

Help in Needs Assessment. Consumers can help ensure that needs assessments consider the needs of consumers from differing populations and geographic locations.

Consumer Participation:The Value of Consumers

Identifying Service Barriers. Consumers can identify service barriers that may not be evident to others and can help program planning bodies overcome those barriers.

Outreach. Consumers can help identify ways to reach the consumers, including minority and other special populations with unmet need for services.

Quality Management. Consumers who are clients of funded services can provide direct feedback on the quality of services. Their voices can help determine what services are needed.

Community Liaison. Consumers provide an ongoing link with the community. They can bring community issues to the group, as well as help to bring research and care information to the community.

Food for Thought

Affects of HIV/AIDS

Remembering???

The Denver Principles

Consumer Participation

QUESTIONSOR

COMMENTS???