Community Capacity Building for HIV Vaccine Research, Development,

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Community Capacity Building for HIV Vaccine
Research, Development, Delivery in Canada

• Preliminary results from the CAS - CANVAC Joint
  Project.
• Ottawa Roundtable on HIV Vaccines
• Ottawa, Dec. 4,5, 2003.
• Marc-André LeBlanc David Thompson

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Community Capacity Building for HIV Vaccine
Research, Development, Delivery in Canada

• Partners
• CANVAC
• Canadian Network for Vaccines and
  Immunotherapeutics
• CAS
• Canadian AIDS Society / Society Canadienne du
  sida.

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Research Objectives

• To evaluate levels of general knowledge about
  vaccines and about vaccine R, D, D, among key
  informants in Cancer, HCV and HIV advocacy
  groups.
• To unveil some initial indications of What might
  a strategic plan for community capacity building
  around HIV, HCV Cancer vaccines look like?

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Research Objectives (2)

• To stimulate discussion at a national level re
  long-term strategic capacity building for vaccine
  preparedness in concerned affected communities
  in Canada.
• To prospectively explore how advocates for R,D,D
  in Cancer, Hepatitis C and HIV might collaborate
  in this effort.

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What do we mean by capacity building? (1)

• Raising awareness understanding at different
  levels in affected communities
• 1. Primordially at the level of the
  interconnectedness of vaccine R,D,D with other
  fields of HIV community work.
• Between vaccines other methods of HIV
  prevention (behavioural psycho-social
  interventions)
• Between vaccine R,D, D and treatment R,D,D and
  treatment advocacy

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What do we mean by capacity building? (2)

• Between Canadian efforts on the domestic on the
  international scene (global north the global
  south).
• 2. Maintaining a level of scientific, ethical
  political knowledge inquiry (and enthusiasm)
  within communities, translating disseminating
  it.

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What do we mean by capacity building? (3)

• Building advocacy initiatives around vaccine
  development, research and delivery
• Preparing communities for clinical trials ???
• Anticipating the impact of new prevention
  technologies on HIV prevention treatment

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Methodology (1)

• 1. Literature review
• Qualitative semi-structured research interviews
  with key-informants in community based
  organisations
• Organisations engaged in patient advocacy, health
  promotion education- prevention).
• Executive Directors, Education-prevention
  Co-ordinators, Specialized Activists or their
  designates.

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Methodology (2)

• 3. Interviews are taped transcribed
• 4. Analysis of transcripts
• Coding of the data
• Commonalities Silences
• Quotable Quotes
• 5. Preparation of a draft strategic plan for
  capacity building

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Methodology (3)

• 6. One day meeting to critique the plan and
  propose amendments
• 7. Revision of the draft plan
• 8. Circulation of report to participants
  partners

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Methodology - Interviews

• 26 Interviews With Key Informants
• HIV 20 (7)
• HCV 08
• CANCER 05 (1)
• Total interviews 26
• Notes
• Groups working in both HIV HCV were counted
  twice.
• The figures in brackets are interviews yet to
  take place.
• The analysis of the data from the interviews with
  informants from cancer patient advocacy groups
  has not yet begun.

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Methodology - Interviews (2)

• International 02
• National 10 (2)
• Provincial/Interprovincal 04 (2)
• Local/Regional 12 (4)
• Note Figures in brackets indicate interviews
  yet to be completed.

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Methodology Interviews (3) Local Regional NGOs

• British Columbia 7
• Prairies 1 (1)
• Ontario 3 (1)
• Québec 3 (2)
• Atlantic 0
• Territories 1
• Note Several of the national organisations
  are based in Ontario
• In one of the Ontario interviews, the tape was
  inaudible but the key informant will be invited
  to the group meeting.

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Methodology - Interviews (4)

• Aboriginal Clientele 4 (2)
• Ethno-cultural 1 (1)

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Coding the Data

• What are the pre-requisites?
• What are the assumptions?
• Where are the silences?
• What are the challenges of engaging community on
  a very long-term effort?

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Coding the Data

• How does this fit on a prevention-care-support-tre
  atment continuum?
• What leadership is needed?
• What types of capacity are needed?
• How can we build on existing efforts?

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Community capacity building around vaccines

• Some Preliminary Results

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What are the pre-requisites?

• Improved funding to ASOs
• Without this, the capacity to conduct coherent,
  sustained advocacy on a long-term issue such as
  vaccine R,D,D is lost.
• Development of a long-term culture within some
  branch(es) of the HIV community movement.

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What are the pre-requisites?

• A Canadian Strategy on Hepatitis C to ensure
  survival of an effective, renewable network of
  community groups and advocates.
• Funding and support for an advocacy approach to
  cancer prevention in Canada.

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What are the assumptions?

• The overwhelming majority believe that the
  clinical research for HIV vaccines will be done
  in the north that Canada will have some role to
  play hosting clinical trial sites.
• Only the key informants drawn from national AIDS
  policy advocacy NGOs are otherwise informed.

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What are the basic assumptions understandings?

• Equality
• Key informants believe that they will be
  consulted and have a role to play in aspects of
  clinical research in decisions concerning
  vaccine delivery.
• Human Rights
• Combating vaccine related stigma discrimination.

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What are the basic assumptions understandings?

• Specific populations will need specific
  approaches. Community NGOs are well placed to
  identify these.
• However not all NGOs are necessarily suited as
  sites for the promotion or conduct of clinical
  research nor vaccination.
• Ethnocultural communities Aboriginal
  communities have gatekeepers who must be included
  in the process.

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What are the basic assumptions understandings?

• With comprehended information, some (many) people
  in the most marginalised HIV-vulnerable
  communities will come forward for clinical
  research ultimately for vaccine delivery.

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What are the basic assumptions understandings?

• That governments and public health agencies will
  assume leadership in promoting vaccine R,D, D
  and will support protect communities in the
  process.

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Where are the silences?

• Often people cannot imagine the resources they
  would need in order to be able to conduct
  long-term vaccine preparedness advocacy work.
• A surprising number of key informants had no
  detailed knowledge of whom is conducting adult
  vaccination in HIV affected communities in their
  city.
• A significant minority however were engaged in
  front line vaccination partnerships with public
  health nurses.

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Where are the silences?

• Key informants from outside of the three large
  metropolitan cities Ottawa, had lower
  knowledge of HIV vaccine research.
• Very few informants are aware of CANVAC

27
What are the challenges of engaging community on
a very long-term effort?

• Their immediate needs are so pressing and they
  are so under-resourced that vaccine R,D, D
  seems remote advocacy unattainable.

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What are the challenges of engaging community on
a very long-term effort?

• Its very hard when approached with something
  that seems remote and really not connected to the
  day to day realities of the people were working
  with, it isnt very obvious that we should get
  involved in it. Or that we should devote
  resources to it at the expense of something
  thats more immediate and concrete for us.

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What are the challenges of engaging community on
a very long-term effort?

• In a context where there may be very few or no
  vaccine clinical trials in Canada, building
  capacity and maintaining interest in the
  community may be particularly challenging, but
  not impossible.
• Need to balance enthusiasm against pragmatism re
  delays expectations.

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What are the challenges of engaging community on
a very long-term effort?

• The politics of research are often that
  countries where the research is being done, and
  certainly where the research is successful, will
  be the countries that get faster access to the
  vaccine.

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What are the challenges of engaging community on
a very long-term effort?

• Theoretically, I dont care whether the
  research for AIDS drugs is done here or
  overseas. But practically, Im desparate to have
  those trials in Canada, because I know I can get
  some compassionate access. I can get it more
  easily through the special access program in
  Canada, and I can get people on these drugs as a
  trial.

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How does this fit on the prevention-care-support
continuum?

• The vast majority of key informants from HIV
  community groups support an approach that links
  HIV vaccine advocacy to work in prevention
  treatment.

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What leadership is needed?

• A tiered, complementary and parallel approach to
  leadership
• Governments public health
• National NGOs involved in coalition leadership
  policy analysis.
• Grass-roots community leadership by committed
  militants with a passion for issues concerning
  vaccine R,D, D.

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What leadership is needed?

• Separate entity (committee, coalition, action
  group) to deal with the specific issues. ???
• Involvement / partnership with vaccine community
  interests in the global south.

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What types of capacity are needed?

• Network Building
• Capacities (and resources) are needed to build a
  network of community stakeholders define roles
  and responsibilities.

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What types of capacity are needed?

• Knowledge Information management
• Information resources - a clear, unbiased,
  independent source of information.
• Developing vaccine literacy in HIV affected
  communities.
• Networks for distribution
• Re Present future vaccines keeping things in
  perspective

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What types of capacity are needed?

• Communications Skills
• Develop a communications plan
• Maintain ongoing interest in present future
  adult vaccines, (preventive therapeutic) in
  what is essentially a long-term uncertain
  venture
• Appeal to persons living with and vulnerable to
  HIV

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What types of capacity are needed?

• Advocacy
• Pre-requisite resources translation of
  information.
• Pre-requisite development of a network of
  community actors galvanized around HIV vaccine
  issues.
• Partnership with NGOs in the global south
• Ability to advocate for ethical vaccine research
  and delivery at home abroad.
• Planning for impact on prevention

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What types of capacity are needed?

• Capacity to stay the course over the long run.
• If given the appropriate resources information,
  the overwhelming majority of informants felt they
  would be able to communicate vaccine information
  to their constituencies engage in competent
  advocacy.

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How can we build on existing efforts?

• HIV NGOs affected communities are familiar
  with clinical trials and associated concepts of
  risk, adverse events, efficacy access.
• Treatment advocacy can deal with existing adult
  vaccines with the same interest fervor that
  applies to treatments of OIs.

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What partnerships are needed?

• Within the network
• CAS/SCS
• Legal Network
• CTN
• CTAC
• CATIE
• Clearing House
• ICASO
• ICAD
• Global Network of People Living with HIVAIDS
• MAGNET

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What partnerships are needed?

• With vaccinators conducting adult vaccinations
• With gatekeepers, peer educators in HIV affected
  and vulnerable communities
• In every community there are First Nations
  people who are concerned about these issues. But
  whether the leadership of a community is there
  ... thats what makes the difference.

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Possible partnerships?

• The place of traditional medicines and healing in
  relation to vaccine research needs to be
  considered in many contexts, including Aboriginal
  communities, ethnocultural communities, and among
  people living with HCV.
• Coalition with cancer HCV patient advocacy
  groups poses cultural differences that will need
  to be overcome.

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What partnerships are needed?

• With people advocating for microbicide R,D, D.
• With researchers
• With government

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Possible partnerships?

• Overwhelming understanding that Pharma is
  concerned with money - and only money.
• But there may be a convergence of interests.
• Dialogue is possible but community requires a
  safe space.
• Incentives, regulations and contractual
  obligations will have to be put into place to tip
  market forces to favour vaccine R,D, D.

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What partnerships are needed?

• With Researchers Industry
• A considerable cultural gap is perceived to exist
  between the research community HIV affected
  communities.
• Both have the desire to work with each other,
  need each other, and have a convergence of some
  important interests.

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What partnerships are needed?

• There is a widespread perception particularly
  among advocates for
• IDU HCV patients
• Aboriginals living with HIV and
• Persons of colour with HIV
• that pervasive direct and systemic
  discrimination exists within medical and research
  services offered to marginalised Canadians -
  particularly those who are co-infected with HIV
  HCV.

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Obstacles and challenges

• The dire situation of multiply marginalised
  people who are living with, affected by or
  vulnerable to HIV
• those communities who could probably benefit
  the most are, in some cases, the ones for which
  the vaccine would be lowest on the priority list
• The uncertain time frame of vaccine development

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Obstacles and challenges

• Perceived competition in an environment where
  resources are scarce
• North vs.South
• Treatment vs. Prevention
• Vaccines vs Existing preventive behvioural
  interventions
• Therapeutic vs. Preventive vaccines
• Cancer vs AIDS vs HCV funding.
• Although the interviews occasionally revealed
  evidence of these tensions, the majority of
  informants favoured a model recognising the
  synergies.

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Obstacles and challenges

• Inter-community stigma,fear discrimination.
• Intra-community stigma discrimination
• Information overload it must be personally
  relevant to stick.

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Whats next?

• Continue literature review
• Complete interviews for a more representative
  sample
• Speak with the CANVAC secretariat researchers
• Complete draft capacity-building strategy
  document
• Face-to-Face Meeting
• Revise document and disseminate

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Some closing thoughts

• Development of the communities capacities to
• Inform policy, evaluate influence the content
  of PPPs
• Inform policy and participate in public health
  decision making re vaccine research delivery.
• Support advocate for funding for more better
  vaccine research in the global north in the
  global south.

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Some closing thoughts

• Develop a coherent community advocacy concerning
  issues of stigma discrimination related to
  participation in clinical trials vaccination
  and arising in decisions concerning access to
  both.
• Provide a community commentary and perspective
  advocating for the most effective use of Canadian
  resources in the search for HIV vaccines.
• Elaborate community requirements from clinical
  research
• Monitor clinical research related community
  benefits

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Some closing thoughts

• Be able to spring into action according to
  carefully drafted plans with assigned roles
  responsibilities whenever a clinical trial comes
  to Canada whenever proof of concept is
  announced.
• Partner with communities in the global south in a
  meaningful way at every step of vaccine R, D,
  D.