Women's Research Agenda Final Event Report - Canadian AIDS ...

TABLE OF CONTENTSDEDICATION ....................................................................1ACKNOWLEDGEMENTS ..........................................................2REPORT OVERVIEW .............................................................7BACKGROUND ................................................................. 11PARTICIPANTS .................................................................12OBJECTIVES ..................................................................14SECTION 1: PRESENTATIONS AND LARGE GROUP DISCUSSIONS ......................15Welcome and Introductions; Memorial to LaVerne Monette .........................15Introduction to the Event Objectives ..........................................15Setting the Stage: Why is Research for/with/about Women, Transwomen,Girls and HIV/AIDS Important? ..............................................16Using the determinants of health as a lens to examine HIV vulnerability and resilienceamong women: Findings from the Population-Specific HIV/AIDS Status Report ..........20Au-delà du savoir épidémiologique: La nécessité d’une analyse critique de la recherche surle VIH/sida dans la conception de nos recherches, nos politques et nos actions a l’égarddes femmes. ................................................................22Large Group Discussion: Beginning to Develop a Research Agenda .....................23Research priorities at the Canadian Institutions of Health Research: Perspectives from theInstitute of Gender and Health and the CIHR HIV/AIDS Research Initiative ................24Round Table Discussion ........................................................26Is there a Choice for Women between just Getting Older and Maturing Gracefully? .......26Environments of Nurturing Safety (EONS): Aboriginal Women in Canada—Five Year Strategy on HIV and AIDS ...........................................27Black Girl Talk: Unravelling the Complexities. Calling for Action .......................28Emerging Research Priorities for African, Caribbean and Black (ACB) Women. . . . . . . . . . . 30Large Group Discussion: Emerging Themes and Strategic Directions .................30National Clinical Research Studies in HIV positive women: Issues in Co-Infection, Aging,and Reproductive Health ......................................................31Discussion of a National Mandate on Women and HIV Research and Education in Canada:Presenting Women for Action and the Canadian HIV Women and Reproductive HealthCohort Study ................................................................32An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011i

SECTION 2: WORLD CAFÉ .......................................................33TOPIC #1: Priorities and Directions for Research in Canada ...........................33TOPIC #2: Increasing Research Capacity .........................................36TOPIC #3: Building Partnership Capacities and Facilitating Multi-Disciplinary Linkages ......38TOPIC #4: Mobilizing Resources ................................................40TOPIC #5: Research Applicability and Knowledge Translation and Exchange ..............41SECTION 3: TOPICS FOR FUTURE MEETINGS .......................................43SECTION 4: KEY THEMES ........................................................47SECTION 5: NEXT STEPS AND MOVING FORWARD ..................................50APPENDIX A: EVENT AGENDA ....................................................51iiTowards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

DEDICATIONThis report is dedicated to the memory of our dear friend and colleague,LaVerne Monette (1953-2010).An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 1

EVENT PARTNERS AND COLLABORATORSThe following individuals and organizations were involved as partners and collaborators in the event.This included participating in the planning meetings of the National Conference on Women and HIV (inFebruary 2009 and 2010), participating in the steering committee of the National Conference on Womenand HIV, participating in the steering committee of the women’s ancillary event at CAHR and/or comingon as a collaborator on funding applications. Partners and collaborators also helped promote the event,distribute materials, and assisted with various tasks at the event itself.• Esther Amoako, Ontario HIV Treatment Network(OHTN)• Patricia Bacon, Blood Ties Four Directions Centre• Kristen Beausoleil and Jacqueline Arthur, PublicHealth Agency of Canada (PHAC)• Mélina Bernier, Coalition des organismescommunautaires québécois de lutte contre lesida (COCQ-SIDA)• Louise Binder, Leah Stephenson and ColleenPrice, Canadian Treatment Action Council (CTAC)• Sandra KH. Chu and Patricia Allard, CanadianHIVAIDS Legal Network• Anne Marie DiCenso and Claudia Medina,Prisoners with HIV/AIDS Support Action Network(PASAN)• Monique Doolitte-Romas, Kim Thomas and SophieWertheimer, Canadian AIDS Society (CAS)• Peggy Frank, Positively Africa• Jacqueline Gahagan, Dalhousie University• Kara Gillies, Voices of Positive Women• Saara Greene, McMaster University• Beckie Huston, Many Rivers Counselling andSupport Services• Christine Johnston, Canadian AIDS TreatmentInformation Exchange (CATIE)• Angela Kaida, Simon Fraser University• Mona Loutfy, Women’s College Research Institute• Shari Margolese, Blueprint for Action on Womenand Girls and HIV/AIDS and Women’s CollegeResearch Institute• Khatundi Masinde, Community Consultant,Women’s College Research Institute• Sue McWilliam, Dalhousie University• Sharon Milewski, YouthCO AIDS Society• LaVerne Monette, Ontario Aboriginal HIV/AIDSStrategy (OAHAS)• Deborah Money, Women’s Health ResearchInstitute• Kathleen Myers and Daniella R. Boulay-Coppens,Centre for AIDS Services Montreal (Women) (CASM)• Lea Narciso, Ontario Women’s Study• Tracey Nolan, Individual• Hazelle Palmer, AIDS Committee of Toronto (ACT)• Angel Parks, Positive Youth Outreach (PYO)• Doris Peltier, Canadian Aboriginal AIDS Network(CAAN)• Anita Rachlis, Sunnybrook Research Institute• Janet Rowe, The 519 Church Street CommunityCentre• Barby Skaling, Carrier Sekani Family Services• Roberta Stout, Prairie Women’s Health Centre ofExcellence• Marcie Summers and Melissa Medjuck, PositiveWomen’s Network• Wangari Tharao and Marvelous Muchenje,Women’s Health in Women’s Hands• Anne Wagner, Ryerson UniversityAn ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 3

PROGRAMMING COMMITTEEThe programming committee was involved in the development of the event program. The committeebegan its work in January 2011. Through teleconferences and email correspondence, committee membershelped develop the event program, including identifying and helping to liaise with speakers, helping with thedevelopment of program materials, and developing the event objectives, structure and format.• Kristen Beausoleil, Public Health Agency ofCanada• Mélina Bernier, Coalition des organismescommunautaires québécois de lutte contre lesida (COCQ-SIDA)• Sandra KH. Chu, Canadian HIVAIDS LegalNetwork• Jacqueline Gahagan, Dalhousie University• Saara Greene, McMaster University• Christine Johnston, CATIE• Angela Kaida, Simon Fraser University andWomen’s Health Research Institute• Khatundi Masinde, Community Consultant,Women’s College Research Institute• Shari Margolese, Blueprint for Action on Womenand Girls and HIV/AIDS and Women’s CollegeResearch Institute• Melissa Medjuck, Positive Women’s Network• Deborah Money, Women’s Health ResearchInstitute• Lea Narciso, Ontario Women’s Study• Colleen Price, Canadian Treatment Action Council• Roberta Stout, Prairie Women’s Health Centre ofExcellence• Wangari Tharao, Women’s Health in Women’sHands CHC• Anne Wagner, Ryerson University• Sophie Wertheimer, Canadian AIDS SocietyFUNDRAISINGMobilizing resources to organize an event of this scope would not have been possible without thesupport of:• Louise Binder, Canadian Treatment Action Council• Monique Doolittle-Romas, Canadian AIDS Society• Jacqueline Gahagan, Dalhousie University• Sophie Wertheimer, Canadian AIDS SocietyThe following individuals and organizations participated as co-applicants on diverse fundingapplications:• Anne Marie DiCenso, Prisoners with HIV/AIDSSupport Action Network (PASAN)• Mona Loutfy, Women’s College Research Institute• Khatundi Masinde, Community Consultant,Women’s College Research Institute• Shari Margolese, Blueprint for Action on Womenand Girls and HIV/AIDS and Women’s CollegeResearch Institute• Wangari Tharao, Women’s Health in Women’sHands4 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

SCHOLARSHIP APPLICATION REVIEWERSThe following individuals were involved in developing scholarship materials and reviewing thescholarship applications:• Logan Broeckaert, Canadian AIDS Society• Sandra KH. Chu, Canadian HIVAIDS LegalNetwork• Allyson Ion, SIS Clinic, McMaster University• Angela Kaida, Simon Fraser University andWomen’s Health Research Institute• Khatundi Masinde, Community Consultant,Women’s College Research Institute• Anita Rachlis, Sunnybrook Research InstituteCONFERENCE LOGO COMMITTEEThe following individuals helped to organize the conference logo contest (held in Correctional ServicesCanada facilities), and selected the winning logo:• Esther Amoako, Ontario HIV Treatment Network(OHTN)• Christine Johnston, Canadian AIDS TreatmentInformation Exchange (CATIE)• Sharon Milewski, YouthCO AIDS Society• Doris Peltier, Canadian Aboriginal AIDS Network(CAAN)• Rai Reece, Prisoners with HIV/AIDS Support ActionNetwork (PASAN)• Shannon Taylor, Correctional Service of Canada(CSC)• Sophie Wertheimer, Canadian AIDS Society (CAS)WORLD CAFÉ FACILITATORSThe following individuals facilitated and took notes at World Café tables:• Mélina Bernier, Coalition des organismescommunautaires québécois de lutte contre lesida (COCQ-SIDA)• Logan Broeckaert, Canadian AIDS Society• Monique Doolittle-Romas, Canadian AIDS Society• Melissa Egan, CATIE• Christie Johnston, CATIE• Melissa Medjuck, Positive Women’s Network• Marvelous Muchenje, Women’s Health in Women’sHands• Lea Narciso, Ontario Women’s Study• Angel Parks, Positive Youth Outreach (PYO)• Marcie Summers, Positive Women’s Network• Kim Thomas, Canadian AIDS SocietyAn ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 5

SPEAKERS AND PRESENTERSThe following individuals generously offered their time, knowledge and experience to deliver fascinatingpresentations at the event:• Rose-Ann Bailey, York University• Kristen Beausoleil, Public Health Agency ofCanada• Priscilla Bilsborrow, Voices of Women StandingCommittee, Canadian Aboriginal AIDS Network• Louise Binder, Canadian Treatment Action Council• Marilou Gagnon, University of Ottawa• Jacqueline Gahagan, Dalhousie University• Jennifer Gunning, CIHR HIV/AIDS ResearchInitiative• Jessica Halverson, Public Health Agency ofCanada• Mona Loutfy, Women’s College Research Institute• Khatundi Masinde, Community Consultant,Women’s College Research Institute• Shari Margolese, Blueprint for Action on Womenand Girls and HIV/AIDS and Women’s CollegeResearch Institute• Melissa Medjuck, Positive Women’s Network• Deborah Money, Women’s Health ResearchInstitute• Viviane Namaste, Concordia University• Doris Peltier, Canadian Aboriginal AIDS Network• Neora Pick, Oak Tree Clinic• Zena Sharman, Institute of Gender and Health,Canadian Institutes of Health Research• Helena Shimeles, African and Caribbean Councilon HIV/AIDS in Ontario• Tami Starlight, VIVA BC• Wangari Tharao, Women’s Health in Women’sHands• Wanda Whitebird, Ontario Aboriginal HIV/AIDSStrategyEVENT FACILITATIONThe event was facilitated by San Patten, San Patten and Associates.EVENT ORGANIZATIONThe logistical organization of the event and the coordination of the different committees were overseenby Sophie Wertheimer, Canadian AIDS Society.To all of these sponsors, organizations, groups and individuals, as well as the participants who joinedus in Toronto for the event, we extend our most sincere gratitude and recognition. Thank you.6 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

Section 1 concludes with a summary of the two presentations delivered on the second day of themeeting. Speaking on behalf of Deborah Money, Neora Pick provides an extensive review of clinicalresearch undertaken with women who are living with HIV in Canada. She notes that while thereare some very interesting and important clinical research projects under way, there are still manyaspects of HIV infection in women that require additional attention. She also stresses the need for aninventory where research findings could be “centralized.” In her presentation, Mona Loutfy discussesa few initiatives that are currently under way in Canada. Included amongst these is the Canadian HIVWomen and Reproductive Health Cohort Study (CHIWOS), a large community-based research projectlaunched in 2011, which will provide a wealth of insight as to the complex needs of women living withHIV and AIDS in Canada, and the importance of women-specific services in meeting them.In addition to summaries of these presentations, Section 1 also includes a review of the questionand answer periods held after each individual presentation, as well as a summary of a large groupdiscussion aimed at laying the foundations for the development of a research agenda.Section 2 provides an overview of the discussions had by the participants in the context of a WorldCafé session. This fluid methodology allows for conversations to link and build upon each other aspeople move between small groups, thus allowing all participants to contribute to different discussions.The World Café conversations are organized around five themes, related to research with, for andabout women, transwomen and HIV/AIDS in Canada. Each theme concludes with a series of keyimplications and recommendations for next steps.In their discussions on Priorities and Directions for Research in Canada, the participants identify someof the themes and issues that are currently being addressed in research, as well as multiple areas thatrequire additional attention. The participants also stress the importance of facilitating the translationand exchange of research findings, in order to make them widely available and accessible to a broadrange of stakeholders.In group 2, participants examine how to increase the research capacity of diverse stakeholders,stressing the importance of bringing community members to the table when developing researchprojects, and when setting research agendas. Such processes could be aided by the developmentof tools, such as guidelines for community organizations and researchers to ensure that populationsare adequately involved in decision-making, as well as the inclusion of community members on ethicsreview boards and as part of community advisory committees.In Building Partnership Capacities and Facilitating Multi-Disciplinary Linkages, the participants exploreexisting and potential opportunities for collaboration, within and outside of the HIV/AIDS sector. Inthe process, they encourage a move towards research that favors an open dialogue, as well as multistakeholderand multi-disciplinary collaboration.In Mobilizing Resources, participants explore current and potential funding opportunities for researchwith, for and about women, transwomen, girls and HIV/AIDS. The participants also advocate for moreresearch funding opportunities that recognize the value of indigenous knowledges and that incorporatecommunity capacity-building at their core.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 9

In their discussions on Research Applicability and Knowledge Translation and Exchange, participantsexamine how research and research findings can be made available and accessible to a broadernumber and variety of stakeholders. They provide numerous ideas of innovative and creative methodsthat can be of assistance in reaching these goals, including storytelling, online tools such as youtubeand wordpress, webinars, interactive workshops, arts-based methods and outreach in communityrelevantspaces.Section 3 draws from the evaluation forms completed at the event to suggest topics for future meetings.These points are divided into larger themes, which include: Topics for women living with HIV (forexample the effects of HIV treatments on cognitive functioning and mental health, the sexual healthof women who are living with HIV, and interactions between HIV treatment and hormone therapy fortrans and menopausal women); Prevention topics (including new prevention technologies and theirimplications for women, and how to involve the most marginalized women at risk in HIV prevention,using a resiliency model,); Populations that require additional attention (such as children who havebeen infected perinatally and their families, trans people, Aboriginal women, street-involved women,women who use substances, two-spirited women, immigrant and refugee women, youth and girls,as well as women in prisons); and Services (for example how to better engage youth, the role ofAIDS Service Organizations in supporting women’s health, and partnerships between organizationsand other social and health services). The participants also stress the importance of drawing fromthe participation of and addressing the issues faced by women in diverse regional and geographicalcontexts, including rural, remote and Northern areas of Canada.Synthesizing some of the key themes and issues raised at the meeting, Section 4 highlights three“balancing acts,” each with two perspectives that must be carefully counterbalanced to ensure aninclusive and well-rounded research agenda. These three themes raise important tensions with regardto focusing on populations versus social determinants in understanding and addressing HIV/AIDS;balancing research and action; and ensuring adequate remuneration for participation in research,while meeting research ethics guidelines.Section 5 provides a short summary of the next steps that are currently being undertaken to followup on some of the issues and priorities identified during the meeting. These action items include thecreation of a national network called “Gathering of Spirits: Canadian Women, Trans People and Girls’HIV Research Collaborative,” as well as Working Groups that will aim to address and implement someof the themes and actions raised at the event and by the research collaborative.The event program, the speakers’ presentations, and information about the event and follow-upactivities are available online, at the following address:www.cdnaids.ca/research-agenda-for-women10 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

BACKGROUNDThis report provides the proceedings of the ancillary event called: “Towards the Developmentof a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDSin Canada: A Multi-Stakeholder Dialogue” delivered in conjunction with the 2011 AnnualCanadian Conference on HIV/AIDS Research in Toronto (April 13-14, 2011).The development of this Ancillary event was initiated in February 2010. Several partners, including womenwho are living with HIV/AIDS, service providers, researchers and policy-makers, were involved in preliminaryplanning to organize a second National Conference on Women and HIV/AIDS in Canada. While dedicatedto the idea of developing a large stand-alone event akin to the National Conference on Women and HIV/AIDS in Canada held in 2000, and the women and HIV session held in 2009 at the CAHR conference,the partners identified the benefits of organizing a number of smaller events to lead up to a large nationalconference in 2013. It was proposed that the partners develop a first ancillary event in the context of the20th anniversary of the Annual Canadian Conference on HIV/AIDS Research in 2011 (CAHR 2011). All thepartners agreed, and in keeping with the mandate of CAHR, it was decided that the meeting would focuson research-related issues more specifically. A proposal to host an ancillary event at CAHR 2011 wasapproved by the CAHR Conference Organizing Committee in November, and work began to develop theevent, including inviting additional partners to become involved.Between November 2010 and April 2011, the event partners and collaborators were actively involvedin the development of the event, by providing guidance and feedback in their areas of expertise,and by contributing to fundraising, to advertising and other tasks. Sub-committees in the areas ofProgramming and Scholarships were established to oversee these two specific aspects of the event’sorganization. Invitations to participate in these sub-committees and other organizational tasks wereextended to all the event partners and collaborators, as well as other stakeholders across Canada.Because the partners and collaborators are situated in different areas of the country, most of the workwas carried out through teleconferences and electronic correspondence. The work of the collaboratorswas facilitated by a Programs Consultant based at the Canadian AIDS Society.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 11

OBJECTIVESThe objectives for the meeting were:• To provide a scoping review of research, and identify strengths and gaps in research with/for/aboutwomen, transwomen, girls and HIV/AIDS in Canada• To identify current and/or possible opportunities for resource mobilization, capacity building, skillssharing,knowledge translation and partnership building to enhance research with/for/about women,transwomen, girls HIV/AIDS in Canada• To offer opportunities for dialogue and networking among women, transwomen and girls living withHIV/AIDS and various other stakeholders to improve the understanding and response to women,transwomen and girls’ diverse and heterogeneous realities• To work together to identify and develop realistic strategic priorities and directions to advance andenhance research with/for/about women, transwomen, girls and HIV/AIDS in CanadaGiven the wide variety of interest areas and expertise amongst participants, the Facilitator proposedground rules for the day and asked the participants for their suggestions to add or revise the ground rules:• Everyone’s input is equally valued. Share “air time.”• Everyone is responsible for keeping the schedule.• Only one conversation at a time (in plenary).• Cut to the chase.• Discussions and criticisms will focus on issues, not people.• No idea or question is bad.• Silence cell phones.• Don’t forget the interpreters.There were no other ground rules suggested by participants. However, later in the day, it was notedthat the participants should all mutually agree to abide by a code of confidentiality as participants andpresenters are disclosing personal and potentially sensitive information.14 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

SECTION 1:PRESENTATIONS AND LARGE GROUP DISCUSSIONSThis section summarizes key themes highlighted in each of the presentations, as well asfollow up discussions held with the large group of participants. Many of the presentationslides are available online at www.cdnaids.ca/research-agenda-for-women, although not allpresenters used slide presentations.WELCOME AND INTRODUCTIONS; MEMORIAL TO LAVERNE MONETTEJacqueline Gahagan and Khatundi Masinde opened the meeting with welcoming remarks andbackground information, noting the hope that this meeting would result in a second national conferenceon women and HIV. Wanda Whitebird acknowledged and thanked the Mississauga of the New CreditNation, on whose territory we were standing, and provided a welcoming prayer and song. Doris Peltierprovided heartfelt words of memory and honour for LaVerne Monette:“When she spoke, people listened. She spoke for the LGBT community.She spoke for the disenfranchised and the marginalised. She spoke for the childrenof positive Aboriginal women.”Participants took a moment to remember friend and colleague, Laverne Monette.Monique Doolittle-Romas then welcomed participants on behalf of the Canadian AIDS Society (CAS)and thanked the team of CAS staff who helped put together the meeting. Monique also thanked thepartners who came together in February 2009 and again in February 2010 to make this gatheringcome to fruition. Monique noted special thanks to Louise Binder for helping to raise the funds and toSophie Wertheimer for organizing and writing the proposals.INTRODUCTION TO THE EVENT OBJECTIVESThe Facilitator (San Patten) requested that participants, due to limited time and the diversity ofperspectives represented, use “parking lot” posters on the walls to provide comments and posequestions that they wished to have noted. San provided an overview of the ground rules, objectives,and themes for the day.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 15

She challenged participants to think about how we can ensure that “all the players are at the table”by considering how best to navigate community systems and ensuring that issues of ethics areaddressed within research:“How can we learn from women who are HIV positive? What can we learnfrom academic researchers?”Finally, Shari congratulated the participants and organizers for the meeting:“This meeting is really important because we’re all here. We’re going to stop running with ourown agendas...Thanks to those from outside the community who have come to walk with us.”Marilou Gagnon, acknowledging that she is not a woman living with HIV, expressed that she wishedto share her view as a nurse, and based on her doctoral research with women who are living withlipodistrophy as a result of their HAART treatment. Marilou situated her research as part of a collectivemovement that asks for the recognition of women and girls’ rights.Marilou noted that the link between research and clinical practice is undeniable. Generally, womenaccess care later than men, and she encouraged researchers and care providers to work harder toprovide more care, and care earlier, for women living with HIV. She called for a re-examination of ourwork to make sure that we account for women’s physiological specificities. Clinical research involvingwomen must take into account their context and actively include women in the clinical trial process:“Women need to be included in clinical research, not omitted because they may“affect” the results.”Marilou stated that improving care and support for women requires knowledge about how to improvetheir health care, by specifically taking an interest in their issues, preoccupations and experiencesas patients. She encouraged researchers to account for women’s experiences and realities beyonda focus solely on maternity and motherhood, but also their experiences as patients and of the powerdynamics within the medical system while seeking care and treatment:“It is essential to take count of the inequality of women’s lives in education,work and power in society.”Marilou also emphasized that doing research on women necessitates funding bodies that supportresearch that affects/involves women so that they can participate actively, be listened to and see theirrealities reflected so that we do not depend only on the perspective of “experts.” In particular, shecalled on research funders to support qualitative and descriptive research. She challenged participantsto question if women are meaningfully involved in decision making, and if care providers take intoconsideration the wider context that continues to be marked by inequality.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 17

Tami Starlight identified herself as a woman of trans experience in a colonised land, who has beenliving with HIV since 1995. Her critique of the academic system began with noting that academicinstitutions are less collaborative than competitive, more about capitalism and classism than aboutsocial justice, and created by white heterosexual men. Tami called for participants to challenge all formsof oppression. She noted that each person in the room has the gift of their own personal experienceto give and they should be properly compensated or respected when engaging in research. In thepresent system, academics offer little to nothing for this information despite such information furtheringtheir careers and helping to build their societal wealth and privilege. Tami called for researchers tofunction within an anti-oppressive framework as a foundation, and support inclusion:“Knowing our privilege should be our fundamental place of operation.”Tami explained that as an activist, she does a lot of free work, and called for greater mobilization ofresources to stem the tide of infections in indigenous communities:“This colony has been slow to respond to this epidemic and it speaks volumesof our place on this land.”As a support worker at Positive Women’s Network (Vancouver, BC), Melissa Medjuck shared her perspectiveon research involvement. PWN is the only ASO in Western Canada working exclusively with women, offeringeducation, support and resources for 675 women and their families in BC. PWN receives numerous requestsfor research partnerships, and for their help in recruiting participants and community partners. The researchrequests were so frequent that PWN developed guidelines for their involvement in research projects. Theseguidelines pose screening questions of researchers in order to work with PWN, such as:• What does the research expect to accomplish?• How will this affect positive women?• How will data be shared with women?• Will there by money to cover the women’s childcare and transportation expenses?• What honoraria will be provided for PWN and the women who are involved?PWN also conducts its own research to ensure that its work reflects the needs of its members, andengages peer researchers in this research. In March 2010, PWN completed a Leadership, Engagementand Dialogue to assess the strengths and gaps in local programs, and is developing a 20th anniversarynarrative for PWN, documenting the evolution of HIV/AIDS and women in BC.Melissa outlined several challenges in research, including lack of understanding among researchersabout the reality of women’s lives, the recognition that women are under-represented in clinicalresearch, women being nervous about speaking to researchers and unsure of where the information18 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

will go, women feeling exploited, difficulty for some women with chaotic lives to attend a focus group,and research fatigue in members.“We are over-researched here.”ASOs such as PWN are overloaded with research requests, especially for community-based research.These requests are not only for assistance in recruiting women living with HIV, but also for staff to beinterviewed or sit on committees. Researchers don’t necessarily recognize the burden on organisationsto take on research without financial support for activities such as advertising, mail-outs and recruitingparticipants, and reimbursing research participants. Melissa noted that due to lack of funds for broaderrecruitment, often research is limited to convenience sampling (e.g., women who walk in the door ofPWN) and this results in the same women being asked to participate in research over and over again.FOLLOW-UP DISCUSSIONIn the Question and Answer session after the presentations, the following points were raised by participants:• These four speakers had a common message: what should researchers be considering when doing research?One concrete follow-up action item that should be pursued is the development and distribution of a guidancedocument for research involving women living with HIV that could be used by community organizations as anegotiation tool with researchers, or that could be given to researchers to make sure that they are considerateof community perspectives. This document could draw from similar documents created by PWN, Voices ofPositive Women, or the Canadian Trials Network’s Community Advisory Committee template.• Emphasis of the importance of remunerating women for participating in research, especially sincethey often come from marginalised communities• To address the problem of over-extending research participants and community-based organizations,it may be helpful to centralize the research through one broker organization• Research from international collaborations can be relevant to Canadian issues and populations, andcould help to avoid duplication• Need specialized research for neglected populations, such as research on transsexual transitioning,hormones, tri-therapy and the interactions with HAART• Researchers need to put more effort into the dissemination of their research findings to serviceproviders and individuals who are not affiliated to ASOs. When and how do participants they get tohear about the research studies that they have been participating in?• More focus needs to be placed on putting research into action. While there is a lot of researchfunding available, there needs to be more funding to help transfer research into action:“We want to see changes based on the research [that you have done on us].”An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 19

USING THE DETERMINANTS OF HEALTH AS A LENS TO EXAMINE HIVVULNERABILITY AND RESILIENCE AMONG WOMEN: FINDINGS FROM THEPOPULATION-SPECIFIC HIV/AIDS STATUS REPORTKristen Beausoleil and Jessica Halverson from the Public Health Agency of Canada (PHAC)presented highlights from the Population-Specific HIV/AIDS Status Report on Women and HIV (thedocument is slated for release in the summer of 2011). PHAC has adopted a population-specificapproach in the recognition that HIV affects different populations differently. PHAC has taken thisapproach in order to take focus away from individual behaviours, allowing more consideration ofthe socio-cultural and economic contexts in which behaviours occur. The eight Status Reports areinventories that document what is known about HIV in each of these populations, to inform betterpolicies and programs. Participants were asked to keep in mind that surveillance data does notcapture those who have not tested or been diagnosed with HIV.Some of the highlights from provincial and territorial surveillance data include:• Heterosexual and IDU transmission are the highest exposure categories for women• Ontario has 38%, Quebec has 25%, and British-Columbia has 17% of women with HIV• 2/5 positive reports in Saskatchewan are in women• Limitations of national data—Ontario and Quebec do not report ethnicity• Women tend to be diagnosed at a younger age than men• Aboriginal women in prison are reported to have the highest exposure rate for this population.• Aboriginal women are now almost at the same levels as Aboriginal men• Limited data on transwomen. No Canadian specific data. Estimated that 27.7% of all transwomen inNorth America are HIV positiveThe Status Report provides a better understanding of the determinants of health affecting women inthe context of HIV risk. Jessica and Kristen also highlighted key issues around women’s vulnerabilityand resilience:• In the real world, women make decisions not only based the information provided, but also based onother factors that influence their ability to access and use condoms• There is some evidence that some factors have a positive influence on a woman’s ability to avoid HIV,i.e., resilience factors• Women are more likely to share injection equipment than men• Aboriginal women are three times more likely than non-Aboriginal women to experience partnerviolence, and we know that there is a link between violence and higher risk for HIV infection20 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

The Status Report identified 87 Canadian time-limited research projects under way between 2006 and2009. A key gap noted in the research landscape is on certain ‘cross-populations’ and what interventionsare most effective within specific populations so that they are gender and culturally specific. Jessicaand Kristen highlighted some key implications for future directions:• Focus on women most affected and under-researched populations:• Aboriginal women• Black women• Women who use injection drugs• Cross-populations of women most at-risk of HIV infection (e.g., female youth at risk, womenwho are co-infected with another STBBI)• Women involved in sex work• Transwomen• Focus on evaluative research• Take a closer look at what works: i.e., factors that contribute to women’s resilience against HIV• Emphasize the systematic generation and exchange of knowledge• Integrate research with program delivery• Promote collaboration and strengthen partnershipsKristen noted that the Status Report is not a policy document and does not make policy recommendations.However, it provides a basis upon which evidence-based policies can be developed.FOLLOW-UP DISCUSSION• The law is another key determinant of health and of HIV risk for women, particularly criminalization ofsex work and drug use. While the Status Report does not make policy recommendations, it does takeinto consideration the fact that sex workers’ vulnerability to HIV infection is affected by the law.• The Status Report recommendations are largely focused on implications for research, but should alsoinform programs and policy.• Correction on the amount of money through the Federal Initiative ($72.6 million, not $84.4 million);call for full funding for the Federal Initiative.• The broad definition of heterosexual contact masks non-consensual sex:“What about women who have been raped, coming from conflict zones? Are those womenincluded within this category?”An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 21

AU-DELÀ DU SAVOIR ÉPIDÉMIOLOGIQUE: LA NÉCESSITÉ D’UNE ANALYSECRITIQUE DE LA RECHERCHE SUR LE VIH/SIDA DANS LA CONCEPTION DE NOSRECHERCHES, NOS POLITQUES ET NOS ACTIONS A L’ ÉGARD DES FEMMES.In her presentation “Beyond Epidemiology: The Need for a Critical Analysis of Research on HIV/AIDSin the Conception of Research, Policies and Actions Related to Women,” Viviane Namaste aimedto stimulate discussion around three objectives: to consider the limits of our knowledge, to questiondominant frameworks in the management of the epidemic, and to encourage critical reflection onresearch—its themes, methods, and uses. With respect to epidemiology, Viviane noted that after 30years of HIV, it is time to ask if our response has been adequate. Surveillance reports frame, inspire,and inform the response to HIV, but a glaring omission is the lack of data on transwomen:“How is it that people in the field have buried their friends and PHAC doesn’t knowabout these women?”While there may not be any surveillance statistics for transwomen, there is grassroots knowledge.Viviane cited one woman in Montreal who made a list of all her trans friends who have passed away,and counted 70 who had died, most of them from HIV. Thus, it is important to question if our knowledgeand our research actually is measuring reality.Viviane also noted the importance of language and knowing the history of AIDS. The dominantdiscourse is that the face of HIV has changed: in 1981 it was the 4Hs (homosexuals, heroin users,hemophiliacs, Haitians), and now women are the face of HIV. But Viviane questions if this is thetrue history, as reliance on English-only sources skews our narrative of the history of HIV. In a1979 publication, for example, Acta Clinica Belgica documented the case of a man from Zaire (nowDemocratic Republic of the Congo) who died of Kaposi sarcoma:“What are the questions that we don’t ask if we’re only consulting English sources?”Viviane also provided a critique of the Population-Health Model. While it allows us to examine theissues faced by specific populations, it can also lead us to forget other populations, including swingers,sex workers, bisexual and lesbian women, and the clients of sex workers:“We never talk about the clients of sex workers. If the rate of HIV in sex workers is higher,maybe it’s because the clients are infecting them. Are we even allowed to ask this questionin the context of the population-health model?”When questioning the lack of attention to swingers, Viviane has been told “that swingers [don’t] haveany contact with public health researchers/programs/public health units.” Viviane also questioned thatsurveillance reports are not policy/political documents. For example, if the Status Report says thatAboriginals are increasingly affected and infected, then money and programs will be developed for this22 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

population. It is the right of everyone to have information and services on sexual health, but if we adopta population health model too strictly, the resources will be limited to specific sub-groups, and we won’tbe targeting the women and other groups who are not included within these models. Viviane raisedthe question: does this population-health model create competition for resources amongst women?Is there another way to structure funding and research so as to eliminate or reduce this competition?Finally, Viviane encouraged participants to think about research that goes beyond simply reacting tothe data that we already have. She raised several reflection questions (included in her slides, whichare available for download at cdnaids.ca/research-agenda-for-women).LARGE GROUP DISCUSSION: BEGINNING TO DEVELOP A RESEARCH AGENDAFollowing Viviane’s presentation, the participants had the opportunity to engage in a large groupdiscussion. The following are some of the key terms that emerged from the discussion:• How do we speak to young people? For example, youth know that two women together will attractmen, and these are youth who don’t even know what swingers are. And youth are very complacentabout HIV.• Other issues and populations that are neglected:• date rape drug (both ways from men to women and women to men)• online social networking and dating sites• non-documented migrants• transwomen• hepatitis C and coinfection• implications of “treatment as prevention” policies• women who are victims of abuse/violence• women in prisons• children who have been infected perinatally, children who are affected• individuals moving between urban centres and small remote communities• sex workers, including those working in massage parlours• clients of sex workers• Need a guiding principle requiring that researchers collaborate, rather than be so competitive.• Prevention research should not only be conducted in the context of biomedical approaches to HIV(e.g., treatment as prevention)An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 23

• Need more intervention research, including peer-based—to move from research to action, and sharesuccesses across regions• Need more research about treatment for positive women, and the effects of those treatments• Need more active uptake and dissemination of research, and effective knowledge exchange withprogram planners, policy-makers and service providers:“What have we done with the research we have done so far? Some communities have beenresearched over and over and over again. What is happening with that research? How dowe get it into the hands of the people who need it?”• Need more discussion about operationalizing different research frameworks for different populations• Concerns about the population health approach—it divides women into these categories.“You can be a youth, an IDU or a hetero but somehow you can’t be all of these things.These are not statistics that I can’t use or relate to. Maybe we could see bubbles thatoverlap. We don’t fit into all these separate categories, we often overlap.”• Impact of the law on vulnerable populations such as Asian workers in massage parlours withcriminalization of their work, unofficial immigration status, and fear of police abuse and deportation• We shouldn’t be placed in the position of advocating for either research or action...“It shouldn’t beeither or. It should be both.”RESEARCH PRIORITIES AT THE CANADIAN INSTITUTIONS OF HEALTHRESEARCH: PERSPECTIVES FROM THE INSTITUTE OF GENDER ANDHEALTH AND THE CIHR HIV/AIDS RESEARCH INITIATIVEZena Sharman provided an overview of the funding available from the Institute of Gender and Health.Zena explained that investigator-initiated funding is earmarked for researchers to apply in opencompetition and is allocated for researchers who are affiliated with research institutions, acknowledgingthat this reinforces power dynamics between community and researchers. Zena also mentioned therecent availability of Team Grants for research on violence, gender and health, eligible for five- yearsof funding. Three Team Grant applications focusing on HIV have been invited to submit full applicationsand decisions will be announced in a few months:• Team Grant on contexts of vulnerabilities, resiliencies and care among people in the sex industry (Benoit)• A two-pronged service and community mobilization intervention to reduce gender-based violence andHIV vulnerability in rural South Africa (Jolly)• Team grant on social and structural violence and HIV among vulnerable populations (Shannon)24 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

Jennifer Gunning provided an overview of the CIHR HIV/AIDS Research Initiative. She noted that theInitiative has a Strategic Plan guiding its activities and investments (2008-2013), which identifies sixthematic priorities for HIV research: 1) Health systems, services and policy; 2) Resilience, vulnerabilityand determinants of health; 3) Prevention technologies and interventions; 4) Drug development,toxicities and resistance; 5) Pathogenesis; and 6) Issues of co-infection and co-morbidities. Thestrategic plan and funding also encourages research that specifically addresses the needs andpriorities of the target populations identified by the Federal Initiative. Women are identified as one ofthe eight key populations and this category would also apply to transwomen and girls.Zena encouraged participants to check the CIHR website often, as funding opportunities are launchedon an ongoing basis. Participants were also encouraged to contact Zena or Jennifer directly. Finally,Jennifer noted that there is a vacant community position on CIHR’s Research Advisory Committee andencouraged interested individuals to be nominated.FOLLOW-UP DISCUSSION• Community-based organizations get many requests to participate in research and yet there is nofunding for infrastructural research support.• This is an issue raised at CHARAC that will be addressed in changes to the CBR fundingprogram. The CBR Initiative also allows (in large scale funding opportunities) for releasetimein the research budget, so that funding can be spent on release-time stipends forcommunity partners engaged in research.• Several of the community members noted that they are very tired of “being researched,” and inparticular, don’t feel respected in the way that they are getting researched. They feel that tokenisticforms of recognition (e.g., $25 Wal-Mart card) do not adequately value the knowledge that they bring.“A lot of people earn their doctoral letters on the backs of people like the Aboriginalcommunity. To be researched in that way is not respectful.”To be an investigator one must have a PhD and there are few in the Aboriginal community. Academicresearch is viewed to be superior despite the fact that “I am the facts on the ground.” The researchcurrently focuses on the deficits of Aboriginal women. If you dug through the layers, you’ll find the soul andthe spirit of each of those women. Where does the indigenous knowledge of women fit in this realm?“A lot of the research is focusing on Aboriginal women’s deficits. That’s not who we are.Women are not just victims.”• The Institute of Aboriginal People’s Health is working to develop guidelines in orderto defy the power structures that limit Aboriginal people’s ability to be valued andcompensated in research.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 25

• We need to look at how these proposals are evaluated—not just CBR but all of the proposals. Protocolsshould clearly outline that community involvement must be sustained and real.• Because of CIHR’s structure, you need a certain amount of bureaucratic literacy. This again playsinto the power dynamics. You need to know how to manipulate the boundaries and the confines of thebureaucracy.“There are power structures within the academy and within the institutions.My message to the research community is: how do you work within the current structurethat you have to attain the goals that you want?”ROUND TABLE DISCUSSIONIn the afternoon of the first day, participants were treated to presentations on four topics related toresearch with/for and about women, transwomen, girls and HIV/AIDS.Louise Binder offered a presentation titled: “Is there a Choice for Women between just GettingOlder and Maturing Gracefully?” Louise explained that general guidelines exist for first-line HAARTand for PHAs who are treatment-experienced. These guidelines, which are developed by researchersand clinicians, are based on clinical trials. However, these trials are generally done on men, and thereare rarely trials with enough women to prove that the results apply to women.“Who are the women in the trials? Africa, Aboriginal, age, pre/post menopause,co-infection? Are there enough to deem that the results apply to women of all stripes?”She noted that very little is known about HIV and aging, and even less about women, HIV and aging.There are no guidelines for long-term use of HIV drugs. For example, there is only one study in theUS regarding positive women and heart disease, even though it is well-known that increased visceralfat after menopause increases heart risks and problems with insulin. It is also known that people livingwith HIV are five times more likely to get fatal cancers. Louise called for free anal cancer screeningfor women as a standard of care. She noted that physicians are uncomfortable talking with positivewomen about sex, and inadequately discuss issues of perimenopause and menopause.On a positive note, Louise feels that aging issues are still in the early phases of advocacy and research,and women “can still get on the aging agenda.” The first national conference on HIV and Aging, heldin the United States in 2010, addressed very little about women. Thus, Louise recommended thatparticipants demand a teleconference with organizers of the HIV and Aging conference to ensure thatpositive women are included. She also encouraged dialogue with the CIHR and OHTN. Finally, sherecommended that participants join the Blueprint group and lobby for more attention to aging women’sissues at women’s and aging conferences.26 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

Louise noted that a key issue for women living with HIV is depression. Women living with HIV generallyexperience more depression than men. Depression leads to dementia if not well looked after. Sherecommended a focus on five factors most relevant to women aging with HIV: pre-HIV existingconditions; social determinants of health; family history of aging; social networks and the impact of thevirus and medications on the body. Finally, Louise shared her own recommendations for healthy livingfor women aging with HIV:• Slow down muscle and bone density loss and memory loss—brisk walking and yoga• Strength and exercise training• Vitamin D3 and vitamin C; oily fish; mushrooms. SUN! In moderation.• Don’t be afraid of taking anti-depressants• Anal cancer screening for women!Doris Peltier and Priscilla Bilsborrow presented their work in developing “Environments ofNurturing Safety (EONS): Aboriginal Women in Canada—Five Year Strategy on HIV and AIDS.”They noted that having a PHAC Status Report for Aboriginals speaks volumes about the depth of theepidemic among this group. Doris and Priscilla were pleased to announce that, after five years of workby a strong group of women, Canada now has an Aboriginal women’s strategy, which was launchedon World AIDS Day in Saskatchewan. The Strategic Plan is inclusive of perspectives spanning thelifespan, from children to elders. The development of EONS included consultation input from 300Aboriginal women in 11 cities, using an Aboriginal approach to consultation.“PAW [Positive Aboriginal Women] know what the challenges and the barriers are in livingwith HIV. Voices of Women has adopted a mentorship and solidarity model.”What researchers have said about Aboriginal women:• The gender role of Aboriginal women shifted dramatically as a result of the imposition of Eurocentricgovernance systems and social values• Indigenous cultures were once matriarchal or semi-matriarchal in their social structures• Women held unique roles and responsibilities• Considered the givers of life, and the keepers of the fire and for passing on cultural knowledgeand traditions• Women were seen as sacred human beings and were protected by the men of their communities• There was a prevailing trend of honour, respect and value afforded to Aboriginal women• Aboriginal women held influential positions of authority and were substantially involved in thepolitical, social and economic governance of their PeoplesAn ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 27

Doris also explained that Aboriginal women are now experiencing the most new infections and to datevery little has been done to coordinate a response that addresses the particular ways HIV and AIDSimpacts Aboriginal women. Some of the key barriers/challenges are:• Lack of gender specific service delivery models or programs• Most services have not been designed with the needs of women in mind• Gaps in research that addresses the particular way that HIV impacts Aboriginal women• Current research focuses on the ‘deficit disease model’ which further stigmatizesIt’s time for a community driven response, thus the launching of EONS Aboriginal Women in Canada:Five year strategy on HIV//AIDS. EONS has two overarching goals: 1) To provide a forum and createsupportive environments for PAW to speak openly about the impacts of HIV in their lives and to besupported by other women through this process; and 2) to reach all Aboriginal ‘at risk’ and worktowards the prevention of new infections.Doris noted that creating supportive environments for PAW is key, and the voices of PAW are integralto the shaping of the response. Therefore, the CAAN VOW Standing Committee has adopted amentorship model. EONS provides a road map that can be used in different regions, and has someimplications for research:• Meaningful and respectful engagement• Understanding our protocols• Valuing our indigenous knowledge• Assets and strength based approaches vs Deficits model approaches• It is not about ‘information extraction’• OCAP“Aboriginal women are very tired of being researched. They want to be valued for theknowledge that they have. We have the inside knowledge, we need to be meaningfully andrespectfully engaged in research...It’s not about benefiting the researcher,but how the research will benefit us.”Helena Shimeles and Rose-Ann Bailey presented their research work focusing on the sexual healthof African and Caribbean Black (ACB) teens, in their presentation titled: “Black Girl Talk: Unravellingthe Complexities. Calling for Action.” Helena and Rose-Ann noted that there has been very littleresearch on the sexual health of ACB female youth. Canada has declining rates of teen pregnancy buthigh rates of STIs, indicating inconsistent condom use combined with oral contraceptives. Traditionally,when speaking about teen sexual health, the focus is on negative aspects, while positive indicators of28 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

healthy relationships or sexual satisfaction are rarely mentioned. In urban centres, ACB teens are theleast likely to access information from all sources (clinics, friends, etc.). Moreover, in urban centres,areas that have the highest proportion of minorities also have the highest density populations. HIVprevention in the ACB communities must address the complexities of legacies of slavery, past andcurrent racism, low self-esteem, biological and environmental factors.With respect to research focus for ACB female youth, Helena and Rose-Ann posed the followingquestions:• Where should we place our research focus?• Transmission/acquisition of STIs (including HIV)• Sexual and reproductive rights & perceptions of ACB teen girls• Accessing sexual health services and information• How do ACB teen girls experience these challenges?• Similarly or differently from other teens?• Similarly or differently from older ACB women?• Do ACB teen girls feel that they have the information that they need to make informed decisions abouthealthy sexual practices?• Should we be focusing on intervention research?Helena and Rose-Ann emphasized that more data needs to be captured in order to target programsthat will increase effectiveness of prevention. Their Call to Action includes:• Strike a national multi-stakeholder working group dedicated to focusing attention on the sexual healthof ACB teens (broadly) and girls (more specifically)• Need more capacity building for researchers who are willing to test, evaluate, and develop strategiesfor rolling out effective evidence-based culturally specific prevention interventions for ACB teen girls• Need more targeted approaches—urban communities for sexual health education and strategies(safer sex negotiation, consistent condom use and testing).• Collaborating with the education system as a point of implementation and delivery“Kids are supposed to be in school through age of 18. This might be a good wayto prevent chronic conditions.”An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 29

Wangari Tharao’s presentation focused on “Emerging Research Priorities for African, Caribbeanand Black (ACB) Women,” drawing from findings from the WCBR Project which involved three focusgroups of ACB women living with HIV. Priorities identified by ACB HIV positive women included:• Research in basic science—immunity; genetic influences; effect of contraception on HIVtransmission; research on NPTs that places control in the hands of women (noting that adherencewas higher in women who had negotiated MC use with their partners in the CAPRISA 004 trial);HIV and co-infections.• Clinical Research—gender differences in HIV treatment (dosage); ethno-racial women (do clinicaloutcomes depend on different subtypes?); reactions to medications; pregnancy planning and HIV (noservices in Ottawa); changes in menstrual cycle; HIV and aging.• Epidemiology—lack of disaggregated data; most epi data is based on modeling; timeliness of data;methodologies; ability to capture intersecting issues.• Socio-behavioural Research—HIV prevention; systemic and sectoral accountability; stigma anddiscrimination social isolation.• Need to understand the perspective of young women born with HIV—navigating teenage life andsexuality and trying to figure out how to transition to adult care.Wangari also provided some principles for effective and improved research for ACB populations,including taking a holistic perspective, avoiding tokenism but fully enacting principles of MIPA,ensuring effective knowledge transfer and exchange, and fostering self-determination through theresearch process.LARGE GROUP DISCUSSION: EMERGING THEMES AND STRATEGIC DIRECTIONSAt the end of the first meeting day, participants identified issues that they wished to raise as keypriorities for research directions:• How to reach positive women (including women in rural and remote areas) who are not accessingservices due to a variety of barriers“There’s an absence of women who will never disclose, who don’t want to be tokenizedby their infection, who have busy lives, who cannot come in from rural areasin order to be counted and to be heard.”30 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

• How to address issues of social isolation, discrimination and stigma experienced by positive women:“Why would a woman choose not to speak? Because she’s afraid, because she’ll berejected, because she’ll lose her family and friends, her job, because she will be marked byloss. She has already lost her health and she can’t lose anymore. I want you to rememberthat if you do research, you cannot do research without people who are HIV positivebecause you don’t know what it’s like to be HIV positive. You can’t know that every day it isthere, in your body, in your heart and in your head.”• Other neglected subpopulations which are largely invisible:• street-involved women• people affected by HIV (parents, children who are affected, families)• women in prisons• women experiencing depression and other mental illnessesNATIONAL CLINICAL RESEARCH STUDIES IN HIV POSITIVE WOMEN:ISSUES IN CO-INFECTION, AGING, AND REPRODUCTIVE HEALTHSpeaking on behalf of Deborah Money, who was unable to make it to the meeting, Neora Pick discussedkey findings from clinical research regarding women living with HIV. As of 2008, there are an estimated10,799 women in Canada who are HIV positive. The Oak Tree Clinic has started an initiative providingcare and outreach for women in a correction facility. Clinical research indicates that women have betterclinical outcomes than men. She noted that while there is much clinical research in progress, we cando more to understand HIV among women. She also emphasized that an inventory would be veryvaluable for taking stock of all the research in Canada.FOLLOW-UP DISCUSSION:• Women who participate in clinical research must be adequately compensated, particularly if they livein a rural area and have to travel to pick up the medications. Depending on the study and the amountof time required of the participants, women usually are paid between $10 and $20 for each researchvisit. For women in rural communities, researchers try to send the meds to the GP. To reduce traveltime, researchers can also use teleconferences after the first meeting takes place face to face. Thereis also the possibility of research assistants traveling to the women’s houses, as well as ensuring thatresearch activities take place in the most convenient locations and times for participants.• Some women have noted discrepancies in the amount that research participants are paid, all the wayfrom $10 to $500. From an ethics perspective, a researcher cannot provide payment for participationas it is considered coercion. Typically, researchers are only permitted to reimburse for direct expenses(e.g., $50 = $20 for transportation and $30 for childcare). Higher paying research projects are typicallyrun by pharmaceutical companies in Phase One trials, which are intrinsically higher risk.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 31

DISCUSSION OF A NATIONAL MANDATE ON WOMEN AND HIV RESEARCHAND EDUCATION IN CANADA: PRESENTING WOMEN FOR ACTION AND THECANADIAN HIV WOMEN AND REPRODUCTIVE HEALTH COHORT STUDYMona Loutfy began her presentation by recognizing the work that has been done in Canada toaddress the issues faced by women in relation to HIV/AIDS. She stressed the importance of continuingthis work in a way that allows all relevant stakeholders to take part in a discussion that is inclusive,that produces research and knowledge translation, and that also includes action, care, treatment andsupport in its response. She noted that Canada had the potential to play a key role as a leader in theGlobal HIV/AIDS Movement, and examined some of the ways in which this mandate may be furtherachieved. Mona focused her review on two initiatives:• Women for Positive Action (WFPA) is an international group of researchers and other stakeholdersthat work collaboratively to develop tools, publications and other resources that address some of theissues faced by women in relation to HIV/AIDS. Mona and others would be interested in forming aCanadian chapter of WFPA, akin to the one that has been formed in Italy.• CHIWOS: The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study is a researchstudy that is just beginning. As a multi-stakeholder community-based study being undertaken nationally(Ontario, British Columbia and Quebec in its inceptive phase), and guided by a critical theoretical andsocial determinants of health framework, this is a unique project in Canada. It promises to yield awealth of insight related to the complex needs of women living with HIV and AIDS, and the effects ofwomen-specific HIV/AIDS services uptake on women’s health outcomes.FOLLOW-UP DISCUSSION:• Participants agreed with the idea that what is happening nationally in Canada is very much linked tothe broader global picture. This recognizes the transnational nature of women’s lives, and the fact thatour work can and often does have global relevance.• A participant noted that often, service providers operate from women-centered and/or feministperspectives. She asked how this perspective may be applied in a clinical context, where this is notalways the case.• Another participant reminded the group that it was important to reach out to women outside of theurban setting in research and all other work. She encouraged the individuals involved in CHIWOSand all other research projects to ensure that they were reaching out to populations that are notnormally included.32 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

SECTION 2:WORLD CAFÉThe World Café is a small group conversational process that allows participants to rotatebetween various topics. These conversations link and build on each other as people movebetween groups, cross-pollinate ideas, and discover new insights. The World Café formatwas selected to frame discussions around five issues related to research with/for and aboutwomen, transwomen, girls and HIV/AIDS:1. Priorities and Directions for Research in Canada2. Increasing Research Capacity3. Building Partnership Capacities and Facilitating Multi-Disciplinary Linkages4. Mobilizing Resources5. Research Applicability and Knowledge Translation and ExchangeAs a process, the World Café evokes the collective intelligence of the group and ensures that allparticipants are able to contribute (www.theworldcafe.com).The World Café was conducted in two rounds: one in the afternoon of Day One, and one in the morningof Day Two. Ten facilitators were seated at tables with eight chairs at each table. There were five topicsdiscussed, with two tables addressing the same topic/issue simultaneously. In Round A, participantswere asked to look at the five issues presented and choose three. Round A was divided into 3 x 15minute sections. In that time, participants visited three of the five topics. In Round B, participants chose2 topics that they didn’t discuss the previous day, 2 x 15 minute sections.Below is a summary of the discussions for each World Café topic.TOPIC #1: PRIORITIES AND DIRECTIONS FOR RESEARCH IN CANADA1. A) What themes and issues in research with/for/about women, transwomen, girls andHIV/AIDS in Canada are currently prioritized and pursued?• The participants identified street-involved youth and sex workers (particularly those inVancouver) as specific sub-populations that are currently prioritized in research. Theynoted that most of the focus in research on women is based in urban-city settings, andbased on convenience samples (and thus doesn’t always adequately include marginalizedpopulations).An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 33

• Reproductive health concerns were also identified as current research priorities,including: fertility, pregnancy, pregnancy planning and reproductive health for womenliving with HIV; the impacts of opt-in versus opt-out in prenatal testing; and the impact ofnot breastfeeding for women living with HIV.• Treatment issues for women living with HIV, including: co-infection of HIV and other STIs;the effects of lipodistrophy for women; use of Gardasil by women living with HIV for HPVprevention; and barriers in accessing care.• Other priorities are operational research to understand the impacts of women-specificservices (compared to services that serve everyone), and testing intervention(s) to supportwomen in the process of HIV status disclosure.• Two priorities were noted in terms of the social determinants of health for people living withHIV: housing and employment.• In terms of prevention, the Ontario Women’s Study is focused on identifying HIV risks andHIV prevention needs of different groups of HIV positive women in Ontario, and there isresearch happening on needle sharing causes and impacts.• Two other topics identified as current priorities are: immigration status and HIV testing;community preparedness / uptake on HIV vaccine.1. B) What are the areas, themes, issues and types of research that are lacking and requireadditional attention?RESEARCH ISSUESThe participants identified issues relating to how research is conducted, and modelsof community participation in research. They requested more CBR to understand livedexperiences, what interventions work, and how that knowledge can be transferred toothers. Community-respectful models of research include capacity building and communityengagement, and linkage to frontline practice.TREATMENTSeveral suggestions focused on the issue of HIV treatment, including understanding issuesof dosage and adherence for women and transwomen, for women and for people of differentcultures/races, and for women who are aging with HIV. Other treatment research needs werecomplementary and alternative medicines, and indigenous medicine. Finally, participants calledfor more research regarding women’s experiences of navigating the health-care system, andaddressing misinformation and “ignorance” of health-care providers.34 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

ACCESS TO SERVICESParticipants identified several research priorities regarding access to services, such as: womenliving with HIV who do not access supports or services; the impacts of inadequate pre- andpost-test counselling; and evidence-based prevention for youth, IDU, and sex workers.POPULATION-SPECIFIC RESEARCHThere were several requests for more research on specific populations: sex workers (particularlyin Northern, remote and rural areas; and women working in massage parlours) and sex tradework; youth; people co-infected with HIV and HCV; HIV positive children and perinatallyinfected children; newly divorced women; Asian women (including those in sex work); womenin prisons; Métis women in urban settings; Aboriginal women; women who use drugs (includingsolvent users); women living in rural communities; transwomen; and heterosexual women.SOCIAL DETERMINANTS OF HEALTHParticipants identified several research issues relating to the social determinants of health: foodsecurity and nutrition; poverty as a risk factor; housing and homelessness; impacts of socialnetworks; education (including sexuality education); gender-based violence. Another suggestedtopic was mental health issues (e.g., cognitive dysfunction, mental health interventions; PTSD).STIGMA AND DISCRIMINATIONFinally, there were several suggestions regarding stigma and discrimination, in relation to: HIVand HCV co-infection, stigma experienced by Aboriginals and ACB communities; challengesof disclosure (particularly for parents disclosing to their children); and the impact on access toand quality of care.2. B) Should this research be conducted regionally, thematically, population or communitybased,etc?Participants felt that the research should be conducted in the following ways: by region;prioritized based on most affected populations or communities; and based on research theme.Ideally all research is community-based research and complementary rather than competitive.3. How can the links between research results, clinical practice, program developmentand policy work be strengthened?INVOLVEMENT AND PARTICIPATIONParticipants provided suggestions for improving multi-stakeholder involvement and meaningfulparticipation of service providers, policy-makers, researchers, community members andfunders. They noted the importance of having all stakeholders included on the research team,An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 35

the need for diversity, importance of involving the community early in the development ofresearch questions, and including both allies and dissenters. Other important principles weremeaningful engagement, transparency, greater horizontality (getting out of silos), capacitybuilding, acknowledging and addressing power dynamics, and careful definition of “community.”TOOLS AND RESOURCESThere were suggestions from participants regarding the creation of tools and resources forgreater involvement of women in research projects: research guidelines; and policies to removebarriers to women’s participation. They also called for sustainable funding for research, programplanning and implementation, and for compensating research partners and participants.APPLICATION OF RESEARCH FINDINGS AND KTEAnother major set of recommendations was concerning application of research findingsand knowledge translation and exchange (KTE). Participants called for researchers anduniversities to institutionalize community involvement and KTE, and make formal KTE linkagesfrom research projects to policy and service delivery implications. There were also severalrequests for research findings to be made available through a national centralized databasethat is accessible for free and includes intervention research. Participants requested thatevery research project include a knowledge translation plan to ensure user-friendly access toresearch findings for clients, organizations, policy-makers and clients.4. Key implications and next stepsParticipants identified the following key implications and next steps with respect to settingpriorities and directions for research topics:• Ancillary event proceedings report with action items• Revisit the CAHR research inventory database—revitalize?• By 2014, produce an evidence-based advocacy document for increased HIV/AIDS fundingfor women??• Establish a Steering Committee and working groups to follow up on action itemsTOPIC #2: INCREASING RESEARCH CAPACITY1. Who are the current stakeholders involved in research with/for/about women,transwomen, girls and HIV/AIDS and what are their roles and responsibilities?The participants felt that the stakeholders were largely represented by the people at the meeting:women of all ages, women living with HIV/AIDS, service providers, and policy-makers. But they36 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

also noted that there are important stakeholders not well-represented at the meeting: men/boys, educators, funders and policy-makers, peer researchers, health care providers, publichealth departments and health regions.They described people living with HIV/AIDS and community members as knowledge holders(insider experts) as well as knowledge users, gatekeepers and brokers to challenge and critiqueresearch, trainers and culture/gender guides.Community organisations, service providers, and ASOs were described as gatekeepers forresearcher to access populations (e.g., helping to recruit participants), educators/trainers,advocates for clients, and leaders in KTE (moving knowledge to action), and liaison betweencommunity and researchers.Researchers, academics and research institutions were described as playing key roles inensuring ethical conduct of research, building partnerships with community, and ensuringrespect for community members. Funders and policy-makers provide research funds basedon research priorities, and design funding programs to build capacity, pay for release time,set policies based on/respecting research, and make evidence-informed decisions.2. What are the different steps and processes involved in the development of researchpriorities and projects?Participants noted that this event was an important step, but was only one component ofagenda setting, as more consultation is needed with other stakeholders (e.g., with leadersof ASOs; researchers; people with lived experiences; care providers). More consultationis needed to set the research agenda, to hear about research priorities, avoid duplicationand create opportunities for coordination, and seek community input. There also needs tobe communication with funders to ensure match between community priorities and fundingopportunities. Development of research projects must include consideration of researchoutcomes, needs assessment from a cultural competency lens or anti-oppression lens.Participants also noted that ethics committees and think tanks should include population/community representations or advocates.They asked that research priority setting and projects have equal participation in all levels andnegotiation of roles between community advisory committees, principal investigators, recruitersand peer researchers. They also noted the need for research guidelines for communityorganizations to ensure populations are adequately involved in decision-making. Policy-makersand funders should ensure proper compensation for community roles in research.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 37

3. How can the capacity of different stakeholders be increased so that they can moremeaningfully participate in research at all stages (for example training opportunities,building multi-stakeholder teams, etc)?The participants feel that the value of contribution needs to be equitably recognised for allstakeholders, and that research dissemination must reach all levels. They also noted thatthere needs to be more training opportunities for service providers and for PLWHIV/AIDSto build research literacy and in turn inclusivity. Funding should include infrastructure andsalary support (including for peer researchers), and facilitate multi-disciplinary/multi-siteresearch collaborations. They also recommended that all research include community advisorycommittees and abide by community protocols.4. Key implications and next stepsParticipants identified the following key implications and next steps with respect to researchcapacity building. The most concrete recommendation was to develop guidelines and proceduresfor funders regarding meaningful inclusion of community; and adequate remuneration for CBOstaff time, and for research teams regarding shared decision-making and commitments to KTE.They also identified some models for capacity building:• University without Walls—placement of students with a research team.• Sustainability—link capacity building with employment opportunity and provide transferableskills for community members• Peer mentoring model for both community partners and researchersTOPIC #3: BUILDING PARTNERSHIP CAPACITIES AND FACILITATINGMULTI-DISCIPLINARY LINKAGES1. What are current and/or new, innovative and creative methods that can engagedifferent stakeholders in research and broaden the scope of research messages?Participants identified new engagement strategies as including: use of technologies(e.g., social networking, webinars, videos, photo-voice methods); creating and promotinga user-friendly research database, and ensuring research literacy of all stakeholders. Theyalso suggested creative partnership opportunities, such as connecting students to CBOs,and designating community members as co-principal investigators. The participants notedthat CBOs need capacity building so that they don’t fear research, and to be more engagedin research dissemination and uptake.38 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

2. What are existing and potential ways for these different stakeholders to worktogether, on individual research projects and initiatives and at a broader regional/national scale?The participants identified the Blueprint for Action on Women and HIV/AIDS as an existinginitiative and network that could act as a starting point for national research agenda setting.They also identified potential initiatives, networks and working groups which could be formed.They emphasized that PHAs should be consulted about research priorities, and ensure inclusionof community members from both urban and rural settings, each province and territory. Again,participants called for the development of a user-friendly online database of Canadian HIVresearch, and use of social networking, webinars, and Twitter for its promotion. Participantsalso suggested that HIV researchers and program planners attend non-HIV conferences tobuild cross-sectoral relationships and create collaborations across related issues. Overall,the participants encouraged shifts in power imbalances, fair remuneration, open dialogue andcollaboration over competition. One concrete suggestion was that we develop a suite of topicsto be vetted by community, and once they are prioritised, then research teams can be formedto develop proposals.3. Are there opportunities for partnership-building outside of the HIV/AIDS sector thatcould enhance research for/with/about women, transwomen, girls, their health andHIV/AIDS?The participants had many suggestions for building partnerships outside the HIV/AIDSsector. They encouraged ongoing dialogue with other services areas (e.g., social justice,anti-oppression work, employment, education, aging, mental health, housing, poverty,immigrant and refugee supports, Aboriginal communities, youth, domestic violence/sexualassault) for mutual education and KTE, to expand HIV testing services, and to take HIVout of a strictly biomedical model. Participants encouraged that we find ways to bringdifferent disciplines together through multidisciplinary research teams working on commonpopulations, and shape research agendas based on the lived realities of women’s lives,which aren’t “segmented” into topics such as violence, HIV and housing. It was notedthat women’s organizations are already well-networked and the HIV sector should tap intothese networks.Overall, the participants encouraged more communication and cooperation between HIVresearchers across Canada, and between HIV researchers and researchers in other fields.This would include having HIV streams at general health or women’s conferences, rather thanonly separate HIV conferences. It was also noted that the HIV community needs to do moreoutreach by participating in the meetings of non-HIV stakeholders.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 39

TOPIC #4: MOBILIZING RESOURCES1. What are current and potential funding opportunities for research with/for/aboutwomen, transwomen, girls and HIV/AIDS in Canada?The participants identified many potential funding sources, including government programs,pharmaceutical companies, research institutions and private foundations.2. Who is eligible for these different types of funding? What are the applicationprocesses required to access these different types of funding?The participants noted different levels of accessibility and ease of application to the majorfunding sources (with CIHR being the most onerous), and identified various eligible stakeholdersfor specific types of funding. Participants suggested that along with a research database,we could develop a national inventory of research funding sources. They noted that due tothe complexity of application processes, ethics review, budget development, completing theCommon CV (CIHR), it is helpful for research teams to include qualified investigators.3. What types of research do these opportunities prioritize? How can the capacity ofdifferent stakeholders be increased to enhance access to funding for research with/for/about women, transwomen, girls and HIV/AIDS in Canada?Participants noted that currently available research funding prioritizes clinical research, isbased on competitive models, and favours biomedical, quantitative and deductive researchapproaches. It was also noted that most funding sources favour academic and mainstreamforms of knowledge. Participants advocate for more research opportunities which acknowledgeindigenous knowledge, are intersectoral, and incorporate community capacity building andincentives for CBOs and community members to be actively involved.To increase the capacity of stakeholders to access funding, the participants recommendedmore multidisciplinary research projects and teams, more CBR Facilitators to provide skillsbuilding for community, peer training, research partnership agreements between academicsand community partners, proposal writing training and infrastructure support so that CBOs canactively participate in application processes, mentoring of community advisory board members,and building community readiness up to one year in advance.4. Key implications and next stepsParticipants identified the following key implications and next steps with respect to mobilizingresources.• Identify new and existing funding opportunities and create inventory40 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

• In academic-community partnerships, budget for adequate compensation for ASO-housedresearcher• Outreach to students and post-doctoral fellows• Create national inventory of research that is accessible to researchers and to community• Provide mobile or webinar training to CBOs: how to complete forms, research methods,proposal writing• Develop mentorship opportunities for community-based researchers• Continue to advocate for CIHR to review eligibility criteria so that it is not only academicresearchers who can be PIsTOPIC #5: RESEARCH APPLICABILITY AND KNOWLEDGE TRANSLATIONAND EXCHANGE1. What types of research are relevant to which stakeholders? How are different typesof research used and applied?Participants felt that clinical research, while important, may not be understandable tocommunity stakeholders and needs to be synthesized and translated into lay language.They noted that women who participate in research projects may have different hopes foroutcomes than researchers and funders. From a government perspective, there may bemore interest in risk behaviours and public health interventions. A key message was that allresearch can be relevant to all users, and we should avoid making assumptions about whatresearch would be relevant to whom. By the same token, not all stakeholders are going tobe interested in all types of research. Rather, the focus should be on considering the typesof research questions of interest to various stakeholders and how to effectively conductKTE so that research findings are translated into policies and practice. Having a varietyof stakeholders involved results in richer research. It was also noted that even negativeresults are important and should be reported.2. What are the different approaches and processes that can allow research to becomemore relevant to all stakeholders?ENGAGEMENT AND PARTICIPATIONParticipants emphasized that community involvement must begin during the early stages ofresearch formulation (including question identification), so that they are engaged in designingthe research, and to ensure it responds to community’s questions, concerns and lives. Itwas noted that researchers need to recognize the capacity of community stakeholders.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 41

Stakeholders will be meaningfully engaged in the research process if resources are dedicatedto building research literacy; creating informed participants; and building greater understandingof what happens with their information. They also encouraged that ethics review boards includecommunity representatives, that there is follow-up support for participants after the researchhas concluded, and that financial incentives and gifts are very carefully selected.ACCESSIBILITY AND DELIVERY OF RESESARCHThe participants recommended that careful attention be paid to the audience when presentingresearch findings: finding the appropriate time and place for specific types of research,ensuring accessible language, providing handouts, respecting the intelligence of the audience,demystifying the research methodology, and providing opportunity for dialogue about thestudy’s implications. They also noted that researchers aren’t necessarily the best presenter onthe research team.COMMUNITY-BASED RESEARCHParticipants noted that not all CBR is community-initiated, and that CBR can be conformist.CBR needs to be flexible in accommodating people’s knowledge and experience; Systemsto allow community-based research in its truest definition-happen in community, be flexible,provide opportunities; who is the community in CBR? Who will the research serve? We need tostart deconstructing community and start making research relevant to ALL membersGENERAL RESEARCH ISSUESThe participants provided suggestions about general research issues. They recommendthat research priorities be frequently re-evaluated to keep direction current and being ableto move quickly to keep up with the changes. They also asked that the scope of researchbe maximized for the broadest applicability, that research works to counter the societyimbalances, that research helps to build evidence-based approaches, and that research isfocused on outcomes: “I want to see something happen.”3. What are current and/or new, innovative and creative methods that can engagedifferent stakeholders in research and broaden the scope of research messages?The participants provided many ideas about new, innovative and creative methods for KTE:discussion panels; storytelling; online tools (open source websites like Wordpress; socialmedia; YouTube; online surveys); webinars; community roadshow; interactive workshops; artsbasedmethods (photovoice, body mapping); and outreach into community-relevant spacessuch as schools, where people hang out, community centers, barbershops.42 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

SECTION 3:TOPICS FOR FUTURE MEETINGSThe participants were asked: “For future meetings on research with/for/about women,transwomen, girls and HIV/AIDS in Canada, what topics would you like to see covered?”Their responses are summarized in thematic groupings below.TOPICS FOR WOMEN LIVING WITH HIV• Effects of HIV treatments on cognitive functioning and memory, mental health (e.g., effects ofSustiva on depression)• Traditional medicine versus Western medicines• Medicinal marijuana• Pregnancy in women living with HIV• Aging (neurocognitive, bones, CVD, cancers) for women and transwomen living with HIV• HIV treatment interactions with common medications• Appropriateness of medications for men versus women, side effects specific to women, taking intoaccount clinical changes experienced by women (e.g., menstruation, menopause)• Navigating and exploring the health-care system: what are the problems• Transwomen with HIV: ARV treatment and hormones, interactions and effects• Mental health• Sexual health of women aged 50+ and young women who are living with HIVPREVENTION TOPICS• Update of HIV transmission science—specific risk levels• New prevention technologies and their implications for women• Street-involved women, women who use drugs and how to work from a resiliency model whenexploring HIV risk and prevention• Prevention strategies to reduce STI and HIV infection among women• Sexual violence, access to post-exposure prophylaxis in sexual assault servicesAn ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 43

• HIV prevention in youth• Aboriginal women: why do we have the highest rate of HIV infection among women?How to involve the most marginalized women at risk (i.e., no ties to healthcare, support, financialaid, “not on anyone’s radar screen”)POPULATIONS• Perinatally infected children• Transwomen and transmen• Immigrant and refugees in Canada, including those without immigration papers• Aboriginal women• Street-involved women, women who use drugs• Youth, girls and people who work with girls• Sex workers• Homeless• Women in prisons• HIV and women in the context of colonial, traditional and cultural heritages• Two-spirited women• Women and their familiesGEOGRAPHIC REPRESENTATION• Not so focused on Ontario; more representation from the north, western Canada, prairies, andAtlantic Canada• Issues facing girls/women outside urban settings• Issues related to accessing specialized HIV care, particularly in rural and isolated areasSERVICES• Women-specific and women-centered HIV/AIDS services• Better education and engagement of youth• Role of ASOs in supporting women’s health, and understanding why some women don’t accessASO services (Why don’t they come? How can we support them?)44 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

• Partnerships between organizations and other social and health services• Women demonstrating women’s resiliency capacities—what works in interventions• Developing a common platform for mobilization; concrete action to sustain community initiativesRESEARCH ISSUES• Research ethics and research practices for research on women, transwomen, girls and HIV (bridgingcommunity and the academy), including paying participants and impact on informed consent• KTE innovations—how will we actually implement change?• “Research 101” workshop for stakeholders and ASO workers• Practical implications of being involved in research in terms of time and how women can becompensated for their time• The limits of community-based research• Ways of circulating and making research more accessibleFORMATS• A panel discussion on a controversial issue with well-informed but oppositional views for clear andrespectful discussion• Have all participants bring relevant reports and other resources for sharing and start of “database”• Greater focus on concrete strategies for action and implementation of research findings, rather thanonly identifying issues/challenges• Examine less formalized forms of research• Panel of HIV positive women and their experiences of involvement in research• Small group sessions purposefully pairing HIV positive + community representatives with careproviders in discussion of issues and direction• More time for dialogue and networking and fewer presentations• Provide time for positive women to share their own experiences of being “researchers”• More flexibility for positive women to guide the agenda• More grassroots/frontline inclusion and/or presentations• Round table sharing amongst organizations from variety of locations about their programs• Gathering of only HIV positive women to bring forward issues• Other presentation models beyond reading powerpoint slidesAn ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 45

GUIDING PRINCIPLES• Building on resilience and positive outcomes• More discussion and enactment of GIPA principle• Social determinants of health and how power affects women’s lives• Health promotion• Health from a holistic perspective (physical, social, spiritual and psychological)• Building community power as clear objective• Positive sexuality (not just violence and power)• Women’s rights46 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

SECTION 4:KEY THEMESThere were several key themes that emerged during the CAHR 2011 Ancillary Session:Towards the Development of a Coordinated National Research Agenda for Women,Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue. The multisectoralgathering of 135 stakeholders was a rich opportunity for dialogue and directionsetting, with many key issues identified for follow-up. Several interesting “balancing acts”arose, each with two perspectives, which must be carefully counterbalanced to ensure aninclusive and well-rounded research agenda.BALANCING ACT #1: FOCUSING ON POPULATIONS VERSUS SOCIALDETERMINANTSThe stakeholders identified invisible and/or neglectedpopulations in current Canadian research activitiesand asked for more inclusiveness of immigrants andrefugee women (women of visible and languageminorities), Aboriginal women, women living with HIV/HCV co-infection, women prisoners, transwomen,aging women, sex workers and their clients, streetinvolvedor homeless women, affected family members,and pregnant women living with HIV.Broader focus on socialdeterminantsPopulation-specificLIFESPAN APPROACHOn the other hand, the stakeholders also asked that Canada’s research agenda on HIV and womenextend beyond a population focus and modes of transmission, to vulnerabilities and resilience in theface of stigma and discrimination, criminalization, violence, racialization, sexual identity, poverty, “spiritinjury” and various other forms of social isolation. These social determinants intersect and createcompound disadvantages for women, transwomen and girls affected by and living with HIV.The stakeholders encouraged that the HIV research agenda concerning women, transwomen andgirls be shaped by a lifespan approach, to understand fully the social influences on women frominfancy to elderhood. Depending on an individual’s biological, cognitive, social, emotional, historical,cultural and spiritual conditions, life with HIV may take many paths. Taking a lifespan approach isone means of achieving a balance between focusing on specific vulnerable populations while at thesame time acknowledging and working on broad forms of inequity and vulnerability. Furthermore, thestakeholders encouraged greater focus on community strengths and assets.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 47

BALANCING ACT #2: RESEARCH VERSUS ACTIONThere was a strong call from stakeholders for moreresearch dedicated to women’s specific biological,clinical, social and psychological experiences of HIV. Ashighlighted in Topic #1 of the World Café, priority researchareas can be broadly summarized by the following themes:HIV treatment; access to services; research on specificpopulations; the social determinants of health; and stigmaand discrimination.EFFECTIVE KTEAction (policy and programs)ResearchOn the other hand, it was acknowledged that more needs to be done to ensure that previous andcurrent research activities are effectively disseminated and translated into improved policy andprogram decisions. Stakeholders also called for more intervention research and dedicated resourcesto operationalization of research findings.A strong message was that we must avoid creating tensions in resource distribution between researchand action. Rather, these are two essential and complementary areas of work. The participantsprovided several concrete recommendations for improving knowledge translation and exchange,such as reinvigorating or creating a research inventory / database of Canadian research projects,early engagement of community stakeholders in formulating research projects, capacity building forboth researchers and community partners in effective KTE, and dedicated budget lines in researchprojects for dissemination and translation of findings. They also recommended that researchers worktogether to reduce duplication and competition.Overall, the participants encouraged the research community to enact models of community participationin research. They requested more CBR to understand lived experiences, what interventions work, andhow that knowledge can be transferred to others. Community-respectful models of research includecapacity building and community engagement, and linkage to frontline practice.BALANCING ACT #3: ADEQUATE REMUNERATION VERSUS ETHICALRESEARCH PRACTICEThe participants noted a tension between tokenisticinvolvement of community members in researchprojects, with some communities feeling “researchedto death.” They also noted that often research is notformulated according to community needs or is culturallyinsensitive, and fatigue of research which minescommunities for their grassroots/indigenous knowledgewithout adequate and respectful compensation. SomeEthics GuidelinesAdequate RemunerationMEANINGFUL INVOLVEMENT48 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

community members perceived researchers as careerists who inadequately recognize the value ofcommunity-based knowledge, experience and expertise.Researchers are constrained by both ethics guidelines (as established by the Tri-Council PolicyStatement on Ethical Conduct for Research Involving Humans) and their research budgets, andthus cannot provide remuneration to community participants which could be considered as coerciveinducements. However, stakeholders provided many suggestions for building more meaningfulinvolvement of community members and CBO partners. A key feature of meaningful involvementis capacity building, support of peer researchers, research literacy building, CBO infrastructuresupport to participate in research projects, and adequate time for partnership building and communityconsultation in advance of research project formulation. Another concrete recommendation was that aRemuneration Working Group be convened to develop some guidelines which achieve an appropriatebalance in community compensation.An ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 49

SECTION 5:NEXT STEPS AND MOVING FORWARDThe hosting of “Towards the Development of a Coordinated National Research Agenda forWomen, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue” hasconstituted a stepping stone in the process of initiating and facilitating a national dialogueon research with, for and about women, transwomen, girls and HIV/AIDS.Following the event, the “Gathering of Spirits: Canadian Women, Trans People and Girls’ HIV ResearchCollaborative” was formed. Invitations to participate in the network have been extended nationally to allinterested individuals and organizations, and new participants are welcome and sought on an ongoingbasis. Through electronic updates, members of the collaborative are encouraged to share news,findings, requests for participation, and to remain involved in a pan-Canadian dialogue on researchwith, for and about women, trans people, girls and HIV/AIDS in Canada. Additionally, working groupshave been developed in the areas of Communications and Knowledge Translation and Exchange,Fundraising, Research Gaps and Priorities, and Ethics and Capacity Building, to address some of thepriorities and issues identified at the event. The working groups will also be responsible for developingtools and resources, and implementing other activities to help further the work of the collaborative.These endeavours constitute key steps in the development of a comprehensive research agenda forwomen, trans people, girls and HIV/AIDS in Canada, which builds upon existing research to allow forthe identification of research gaps, opportunities for partnership and capacity building, and strategicdirections to effectively advance research with, for and about women and HIV/AIDS in Canada.For additional information about the “Gathering of Spirits: Canadian Women, Trans People and Girls’HIV Research Collaborative,” or to become involved, please contact Sophie Wertheimer, NationalPrograms Consultant at the Canadian AIDS Society (email: sophiew@cdnaids.ca or 1-800-499-1986ext.123) or visit:www. cdnaids.ca/research-agenda-for-women.50 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

APPENDIX A:EVENT AGENDATIME AGENDA ITEM SPEAKER/FACILITATORDAY 1: WEDNESDAY APRIL 138:30 Breakfast9:00 Welcome and introductions • Jacqueline Gahagan, Dalhousie University• Khatundi Masinde, Community Consultant, Women’s CollegeResearch Institute9:15 Remembering our Losses and Dedicationto LaVerne Monette• Wanda Whitebird, Ontario Aboriginal HIV/AIDS Strategy• Doris Peltier, Canadian Aboriginal AIDS Strategy9:30 Welcome and Thank You’s • Monique Doolittle-Romas, Canadian AIDS Society9:40 Introduction to the Event Objectives • San Patten, Facilitator9:50 Setting the Stage: Why is Research for/with/about women, transwomen, girlsand HV/AIDS important?• Shari Margolese, National Steering Committee of theBlueprint for Action on Women and Girls and HIV/AIDS andCommunity Consultant and Community Based Researcher,Women and HIV Research Program, Women’s College ResearchInstitute• Marilou Gagnon, University of Ottawa• Tami Starlight, VIVA BC• Melissa Medjuck, Positive Women’s NetworkFollowed by 10 minutes of Q & A10:30 Health Break10:45 Using the determinants of health as alens to examine HIV vulnerability andresilience among women: Findingsfrom the Population-Specific HIV/AIDSStatus Report11:15 Au-delà du savoir épidémiologique:La nécessité d'une analyse critiquede la recherche sur le VIH/Sida dansla conception de nos recherches,nos politiques et nos actions à l'égarddes femmes• Kristen Beausoleil and Jessica Halverson, Public HealthAgency of CanadaFollowed by 10 minutes of Q & A• Viviane Namaste, Concordia UniversityFollowed by 10 minutes of Q & A11:45 Large Group Discussion: Beginning to Develop a Research Agenda12:15 Lunch1:00 Research priorities at the Canadian Institutesof Health Research: Perspectivesfrom the Institute of Gender and Healthand the CIHR HIV/AIDS Research Initiative• Zena Sharman, Institute of Gender and Health• Jennifer Gunning, CIHR HIV/AIDS Research InitiativeFollowed by 15 minutes of Q & AAn ancillary session held in conjunction with the Canadian Conference on HIV/AIDS Research - CAHR 2011 51

1:40 Mini Health Break1:45 Round Table Discussion—Environmentsof Nurturing Safety (EONS):Aboriginal Women in Canada—FiveYear Strategy on HIV and AIDSRound Table Discussion—Is there aChoice for Women between just GettingOlder and Maturing Gracefully?Round Table Discussion—Black GirlTalk: Unravelling the Complexities.Calling for ActionRound Table Discussion—EmergingResearch Priorities for African,Caribbean and Black (ACB) WomenMini Health Break• Doris Peltier, Canadian Aboriginal AIDS Network• Priscilla Bilsborrow, Voices of Women (VOW) StandingCommittee, Canadian Aboriginal AIDS NetworkFollowed by 5 minutes of Q & A• Louise Binder, Canadian Treatment Action CouncilFollowed by 5 minutes of Q & A• Helena Shimeles, African and Caribbean Council on HIV/AIDS in Ontario• Rose-Ann Bailey, York UniversityFollowed by 5 minutes of Q & A• Wangari Tharao, Women’s Health in Women’s HandsFollowed by 5 minutes of Q & A3:30 Health Break3:45 Introduction to the World Café format • San Patten, Facilitator3:50 World Café Round A4:40 Large Group Discussion: Emerging Themes and Strategic DirectionsDAY 2: THURSDAY APRIL 148:30 Breakfast9:00 Review of Day 1 and Introductionto Day 29:10 National Clinical Research Studiesin HIV Positive Women: Issues inCo-Infection, Aging, and ReproductiveHealth• San Patten, Facilitator• Deborah Money, Women’s Health Research Institute(presented by Neora Pick, Oak Tree Clinic)Followed by 10 minutes of Q & A9:40 World Café Round B10:30 Health Break10:45 Discussion of a National Mandate onWomen and HIV Research and Educationn Canada: Presenting Women forAction and the Canadian HIV Womenand Reproductive Health Cohort Study• Mona Loutfy, Women’s College Research InstituteFollowed by 10 minutes of Q & A11:15 Large Group Discussion: Next Steps and Moving Forward12:15 Event Evaluation and Wrap-Up52 Towards the Development of a Coordinated National Research Agenda for Women, Transwomen, Girls and HIV/AIDS in Canada: A Multi-Stakeholder Dialogue

April 13-14, 2011Toronto