Consumer Participation in HIV Service Planning

1. Consumer Participation in HIV Service Planning Quarterly Contractors Meeting May 12, 2010 Jennifer Flannagan ADAP Operations Specialist Virginia Department of Health 804-864-7360 Jennifer.Flannagan@vdh.virginia.gov Pamela Whitaker HIV Services Coordinator Virginia Department of Health 804-864-7219 Pamela.Whitaker@vdh.virginia.gov

2. 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

3. 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 members • ADAP Advisory Group members • Public Hearings Roles of Consumers -Regular membership - Active participants in caucuses and committees - Participants in focus groups, support groups within the community

4. 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

5. 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

6. Consumer Participation: How to Elicit and Increase Participation • 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.

7. 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”

8. Consumer Participation:Sustainment and Maintenance of Involvement • Institute continuous processes that help maintain consumer participation • Orientation • Training • Mentoring • Relationship building • Access to Information • Financial Support or Incentives

9. 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.

10. 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.

11. Food for Thought • Affects of HIV/AIDS • Remembering??? • The Denver Principles

12. Consumer Participation QUESTIONS OR COMMENTS ???