Canadian AIDS Society PLWHIV/AIDS Forum June 19, 2009 - Ottawa

1. Canadian AIDS Society PLWHIV/AIDS Forum June 19, 2009 - Ottawa Population Specific HIV/AIDS Status Report for People Living with HIV/AIDS and P-Track Presentation

2. Presentation Outline • Objectives • Brief PHAC Description • PHA Status Report Progress Update • P-Track Presentation and Update • PHAC GIPA Principles Implementation Current Practice and Challenges • Large Group Discussion • Conclusion

3. Objectives • Increase awareness of PHAC’s two key activities as they relate to People living with HIV- and AIDS; • Identify factors that facilitate and challenge the use of the GIPA Principles within PHAC; and • Identify realistic models for the GIPA Principles implementation in PHAC’s work, specifically in developing and implementing policies and programs.

4. Public Health Agency of Canada Vision Statement Healthy Canadians and communities in a healthier world Mission Statement To promote and protect the health of Canadians through leadership, partnership, innovation and action in public health • PHAC has identified HIV/AIDS as one of the major public health challenges. • PHAC confirms the impact of health determinants on individual health. • PHAC recognizes that in public health work the engagement and coordination of a wide range of stakeholders is crucial.

5. Public Health Agency of Canada (cont.) • PHAC includes the following programs that are primarily dedicated to HIV- and AIDS-related issues: • HIV/AIDS Policy, Coordination and Programs Division • Surveillance and Risk Assessment Division • National HIV & Retrovirus Laboratories • Community Acquired Infections Division • AIDS Community Action Program (Regional Offices) • These programs work under the umbrella of the Federal Initiative to Address HIV/AIDS in Canada together with other federal government departments, agencies and in partnership with a wide range of stakeholders.

6. PHAC Engagement Process Existing Committees: Ministerial Council; NACHA; F/P/T AIDS FI Partners and Relevant Federal Government Departments and Agencies PHAC Epi (SRAD); STIs (CAID); Regional Response (ACAP); National Response (HIV/AIDS Division) Working Groups Rep Population and Community; Research; Epi & Surveillance; Federal Policy and Program PHAC-Specific Initiative Other Expertise, as needed (e.g.: scientific review, information specialist) Provincial and Territorial Governments

7. PHA Status Report Development • A Status Report is being developed to provide evidence for targeted programs, policies, and approaches to meet the HIV/AIDS-related needs of PHAs in Canada. • The development of the Status Report is being conducted with the active involvement of PHAs who represent the majority of the working group members. PHAC has also held sessions in 2007 and 2008 during CAS’s PLWHA Forum and CAAN’s APHA Forum to provide information about the development of the Status Report.

8. Update on PHA SR Development From the Outset Stakeholder Involvement Evidence Gathering and Analysis Drafting of the report Stakeholder Involvement Data and Info Gathering Analysis August 2009 Draft, Review Approval December 2009 PHAC’s Approval Dissemination March 2010 Post-Release Evaluation 2010 / 2011

9. Update on PHA SR • Data and info gathering from bibliographic databases - 75% completed. • Data and info gathering from other sources (grey literature) – partially completed. • Analysis and drafting in progress – focus on Chapter 3: Resiliency, vulnerability factors impacting PHA’s quality of life.

10. Why a P-Track? • So far, enhanced surveillance systems (Tracks) focus on individuals at risk for HIV (e.g. I-Track (IDU), M-Track (MSM), A-Track (Aboriginal People)) • Gap exists re: information on knowledge, attitudes, behaviours, quality of life and access to prevention services, etc, among persons living with HIV • P-Track is currently being designed to complement the national surveillance system. When implemented, P-Track is envisioned as repeated cross-sectional surveys that will enable assessment and monitoring of trends among persons living with HIV/AIDS in Canada

11. P-Track Implementation • PHAC initially sought input and advice from PHAs through the PHA Status Report Working Group. • Following the advice from the working group, a national consultation meeting was organized with many PHAs in attendance. • Recommendations were made to create an interim working group, with 50% + 1 PHA representation. • The interim working group was constituted in late 2008. • The framework for P-Track system is currently being developed with the active involvement of PHAs who make up the majority on the interim working group.

12. PHAC Current Practice and Challenges Efforts: • The Federal Initiative recognizes that the direct involvement of people living with HIV/AIDS is central to program and policy development and implementation. • This is reflected in working groups’ terms of reference and membership. • Existing networks, such as National HIV/AIDS Organizations (e.g. CAS, CAAN, CATIE) are used for PHA recruitment. Challenges: • Appropriate representation of PHAs given the diverse lived experiences. • Consultation, engagement, participation overload. • Finding PHAs interested and with the right expertise to be involved in sometimes complex and technical projects. • HIV Status Disclosure. • Sustain interest and motivation over time. • Balancing advice from PHAs with advice from other stakeholders.

13. Discussion Questions • Given the GIPA Principle and the context in which PHAC operates, does our PHA involvement satisfy GIPA Principle (criteria)? • Please outline any other considerations that you feel would support PHAC efforts in sustaining PHA involvement in the development and implementation of HIV-related policies and programs.

14. Contact Information • Alain Houde, Senior Policy Advisor, Populations Section Telephone: 613-954-0628 E-mail: alain_houde@phac-aspc.gc.ca • Susanna Ogunnaike-Cooke, Manager, Epidemiology Section Telephone: 613-954-1320 E-mail: susanna_ogunnaikecooke@phac-aspc.gc.ca • Michael Smith, Senior Policy Advisor, Populations Section Telephone: 613-954-1008 E-mail: michael_r_smith@phac-aspc.gc.ca