Transcript Consumer Participation in HIV Service Planning

Consumer Participation in HIV
Service Planning
Quarterly Contractors Meeting
May 12, 2010
Jennifer Flannagan
ADAP Operations Specialist
Virginia Department of Health
804-864-7360
[email protected]
Pamela Whitaker
HIV Services Coordinator
Virginia Department of Health
804-864-7219
[email protected]
Consumer Participation: Why?
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Planning Bodies and Consortium Roles:
- Ryan White Programs and the Planning process
- A unique perspective
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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:
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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:
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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
Consumer Participation: Benefits
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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
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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
Consumer Participation:
How to Elicit and Increase Participation
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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:
Sustaining Involvement
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Recognize barriers to sustaining participation
– Structure and Process
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Bureaucratic processes, lack of demonstrated respect for PLWHA
input
– Community Barriers
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Lack of commitment to meeting needs of PLWHA, discrimination
– Personal Barriers
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Poor health, competing family or personal demands on time and
resources
– Non-member involvement
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Representation of the entire consumer community, expectation to
“know everything”
Consumer Participation:
Sustainment and Maintenance of Involvement
 Institute
continuous processes that help
maintain consumer participation
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Orientation
Training
Mentoring
Relationship building
Access to Information
Financial Support or Incentives
Consumer Participation:
The Value of Consumers
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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.
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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.
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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
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Identifying Service Barriers. Consumers can identify service barriers
that may not be evident to others and can help program planning bodies
overcome those barriers.
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Outreach. Consumers can help identify ways to reach the consumers,
including minority and other special populations with unmet need for
services.
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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.
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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
QUESTIONS
OR
COMMENTS
???