Positive Sex! Moving from knowledge to action

1. Positive Sex! Moving from knowledge to action Shari Margolese, Women and HIV Research Program, Women’s College Research Institute, Toronto, Canada

2. Messages about love and sex to women

3. Messages about love and sex to HIV- positive women DISCLOSE Safe Sex GO TO JAIL PREVENT ABSTAIN

4. Criminalization of HIV non-disclosure • Canada leads the way in convictions • Issue currently before the supreme court. • The prosecutions case: • “ criminal law is meant to protect the public at large, even if it means singling out people infected with HIV.” “HIV-infected person's sex life can-not be like everyone else's” http://www.vancouversun.com/news/disclosure+must+despite+advances+judges+told/6125140/story.html#ixzz1mI26g6zo

5. What do we do with all of these messages and knowledge? • Judgment HPTN 052 Swiss Statement PEP PrePwomen‐centered health care, prevention options that women can control, and freedom from intimate partner violence. • - social determinants of health right to choose • Prevention! Pleasure SEX • safe-sex satisfaction. violence Relationships love options

6. Turning Knowledge to Action through research and integrated knowledge exchange: The Canadian Fertility Program Model

7. The Issue • Since there is, • Decreasing mortality and morbidity overall related to HIV (life expectancy on average 40 years from diagnosis*) • Increasing prevalence of women who are HIV-positive (51% globally, 22% in Canada) • A majority of women and men living with HIV are of reproductive age (> 80%) • Methods to reduce the chance of vertical transmission to < 1%  Persons living with HIV are going to be interested in PREGNANCY PLANNING * The Antiretroviral Therapy Cohort Collaboration, Life expectancy of individuals on combination antiretroviral therapy in high-income countries: a collaborative analysis of 14 cohort studies. Lancet. 2008; 372(9635):293 -9.

8. The Issue • Discrepancy between fertility needs and services available for HIV-positive people in Canada • Gaps in knowledge, services and resources

9. What were we going to do? Launched: Canadian HIV Fertility Program OVERALL VISION To champion a collaborative program that guides and assists all people living with HIV in Canada with their fertility desires & pregnancy planning in a holistic, ethical, supportive & medically sound manner

10. Our Approach to knowledge exchange (KE) Consider the development of National Pregnancy Planning Guidelines (NHPPG) as an opportunity for KE (Integrated KE) • Identify gaps in knowledge, resources and services • Identify key knowledge users • Identify “champions” of the NHPPG • Identify opportunities for both integrated and end of project KE

11. Planning our Knowledge Exchange

12. Implementing our knowledge exchange activities • Conduct research to support the development of the NHPPG • Gather existing knowledge through a thorough literature review • Invite development team members to exchange experiential knowledge • 1st teleconference – January 2009 • Invite all key stakeholders to NHPPG development team (also input to pamphlets and workshops) • In person meeting in April 2009 at CAHR • HUGE SUCCESS – followed CBR model • Guidelines approved for publication in 2012

13. Pamphlets Available in French & English at www.catie.ca

14. Workshops • For Community (people living with HIV) • And Healthcare & service providers

15. Evaluate our approach or method of integrated knowledge exchange • Evaluation of guideline development process • Evaluation at each in person NHPPG development team meeting • Review by CFAS/SOGC Infectious diseases and guidelines committees • Evaluation of Workshops • Pilot workshops across Canada using an evaluation questionnaire to determine knowledge of the topic before and after the workshop – excellent feedback • Evaluation of Pamphlets- to be done as part of IHPREG (funded)

16. Challenges and Successes Challenges • Overcoming stigma about HIV and pregnancy • Concerns about liability from fertility clinics • Large group of stakeholders to manage Successes Ottawa case – • focus group + workshop pilot + local contact = improved access to services for PLWH (Ottawa fertility clinic now accepting HIV+ patients)

17. KEY TO OUR SUCCESS: Identifying and engaging various stakeholders Key to success of knowledge translation and turning knowledge into action: FIND CHAMPIONS!!!! • Who currently has this knowledge?(Academics, health care and social service providers, patients, policy makers) • Who needs this knowledge? (Academics, healthcare and social service providers, patients, policy makers) • Who has the power to ensure this knowledge is shared and put into action?(Policy makers, regulatory bodies for guidelines and Clinic directors and ASO’s for workshops and pamphlets, gatekeepers)

18. Our next labor of love Canadian HIV Women’s Sexual And Reproductive Health Cohort Study

23. Advice for others who might want to implement a similar method or tool • Consider the entire Research Program as an opportunity for knowledge exchange • Relationships are key and take time and patience • Find champions to help to share knowledge with their peers • Have fun doing it

24. Acknowledgements Thank You! PWN Dr. Mona Loutfy and Team Women and HIV Research Program Women’s College Hospital, Toronto Canadian Fertility Program Investigators and staff NHPPG Development Team