SHAPE (Sexual Health and Genito-Pelvic Pain Knowledge Empowerment) is a pan-Canadian hub dedicated to addressing barriers to evidence-based information and treatment for sexual difficulties and genito-pelvic pain that affect the lives of countless individuals, especially women and gender-diverse people. SHAPE’s goal is to mobilize knowledge, promote inclusivity, and create an equitable, culturally sensitive approach to sexual and genito-pelvic pain health. Towards the goal of closing these gaps, SHAPE has partnered with the Sex Information and Education Council of Canada (SIECCAN) to share knowledge about these conditions on their website.
Lead investigators involved
Dr. Lori Brotto, PhD, RPsych
SHAPE Physician Principal Investigator
Director – UBC Sexual Health Laboratory, Canada Research Chair in Women’s Sexual Health, Professor – Department of Obstetrics & Gynaecology at UBC, Executive Director – Women’s Health Research Institute
Dr. Lori Brotto is internationally recognized as a leader in sexual health research. She has mentored 149 trainees and evaluated psychological interventions for sexual dysfunction and genital pain, which collectively impact 1/3 of women. Her work influences practice internationally, with mindfulness now implemented in sexual medicine centres and recommended as front line care in international guidelines. In recognition of her contributions, she holds a Canada Research Chair in women’s sexual health, has received recent awards in mentoring junior faculty, excellent public education through media, book awards, and is listed among the top 2% cited scientists by Stanford/Elsevier (SCOPUS citations).
Dr. Melanie Altas, M.D.
SHAPE Physician Principal Investigator
Director, BC Centre for Vulvar Health
Dr. Altas is a Gynaecologist and Clinical Associate Professor in the Department of Obstetrics & Gynaecology at University of British Columbia. She is the Director of the BC Centre for Vulvar Health at Vancouver General Hospital and a Sexual Medicine Consultant at the BC Cancer Agency. Her current clinical practice is dedicated to vulvovaginal conditions, sexual pain disorders and menopause. Dr. Altas is committed to empowering women with education and tools to heal themselves. Aligned with her professional mission to promote patient-directed care, Dr. Altas regularly collaborates with community health care providers and patient partners, to translate knowledge into practice and improve access to health services for individuals with undertreated conditions.
Alex McKay, PhD
SHAPE NGO Partner Principal Investigator
Executive Director, Sex Information and Education Council of Canada (SIECCAN)
Dr. McKay has a Ph.D. from the University of Toronto in Education. Since 2016, he has been the Executive Director of the Sex Information and Education Council of Canada (SIECCAN) and Managing Editor of the Canadian Journal of Human Sexuality. At SIECCAN, Alex works with an expert interdisciplinary team focused on sexual health education/promotion research and content and resource development for professional and public audiences. Current SIECCAN projects address sexual health promotion for Autistic and disabled youth, developing and implementing effective sexual health education policy and practice to prevent gender-based violence, and the development of benchmarks for effective comprehensive sexual health education.
What impact do you hope to have as a researcher/clinician working on this topic?
Sexual health concerns in women are prevalent, distressing, and frequently not discussed by women and their healthcare providers. However, in the past 15 years, there has been a surge of excellent new research on women’s sexual health and genito-pelvic pain, but such findings are not appropriately disseminated to women, their healthcare providers, and the general public. My hope is that SHAPE serves as a vehicle for significantly bridging the knowledge gap in women’s sexual health and that healthcare providers feel empowered with evidence to effectively manage such concerns. Moreover, my hope is that all females, regardless of their gender identity, and that under-served groups, Black women, Indigenous women, and Two-Spirit people feel seen throughout the work we are embarking in, and directly benefit from our knowledge mobilization activities. Finally, we are excited about building a network of Canadian trainees in sexual health and genito-pelvic pain research and practice, providing learning opportunities in knowledge mobilization, and creating capacity by providing grants to support trainee’s research in these identified priority areas.
How would you describe the objective(s) of your Hub in the simplest terms?
- Mobilizing knowledge: making evidence-based information accessible to the public and healthcare providers.
- Influencing policy: creating clinical practice guidelines to guide healthcare decisions and policies.
- Training future leaders: building capacity for the next generation of researchers in women’s health.
- Community engagement: ensuring research priorities reflect the needs of diverse communities.
What would look different if your Hub has the impact you envision? What changes and how?
A transformed landscape of sexual difficulties and genito-pelvic pain where women and gender-diverse persons would experience less stigma, faster diagnoses, and improved quality of life. Healthcare providers would gain confidence and deliver patient-centered care. Research would flourish, leading to new insights and solutions. Ultimately, a more supportive and inclusive society would emerge, where these conditions are met with understanding and effective care.
Community partners
Name / key affiliations | Expertise | Roles in the SHAPE Hub |
|---|---|---|
| Individuals with lived or living experience | ||
| BRIDGE-COOK, Phillippa, PHD Founding Board member, The Endometriosis Network Canada | Patient advocate for 10 years, uses personal story of 20 year delay in diagnosis to empower others as founding board member of The Endometriosis Network Canada. | KNOWLEDGE USER Will identify knowledge to be disseminated to (1) public, and (2) health-care providers focused on management of GPP |
| LUCIANI, Katie Executive Director, The Endometriosis Network Canada | Experienced 16 year delay in endometriosis and experienced severe GPP that led her to become an advocate for endometriosis awareness. | KNOWLEDGE USER Will identify knowledge to be disseminated to (1) public, and (2) health-care providers focused on management of GPP |
| LANTHIER, Jaclyn, PhD The Lost Labia Chronicles | Disseminate information about lichen sclerosus through her platform, Lost Labia Chronicles and creates educational material through Lichen Sclerosus Support Network | KNOWLEDGE USER Will identify knowledge to be disseminated to (1) public, and (2) health-care providers focused on symptoms of SD/GPP due to Lichen Sclerosus |
| JONES, Claire Director, The Canadian Post-SSRI Sexual Dysfunction Society | Uses stories from own lived experience of sexual dysfunction after SSRI use to advocate for increased awareness about, and better training of GPs in PSSD | KNOWLEDGE USER Will identify knowledge to be disseminated to (1) public, and (2) health-care providers focused on identifying and managing SD after SSRI/SNRI use |
| LEONOVAS, Hayley Patient partner, The Vulvodynia Toolkit Project | Lived experience of GPP who experienced delayed diagnosis. Advocate for educating GPs by being a patient partner on developing the Vulvodynia Toolkit | KNOWLEDGE USER Will work with PA Altas to disseminate The Vulvodynia Toolkit and guide evaluation. |
| LOOP, Kirsten Patient partner, technical writer and user researcher, certification in technical communication | Lived experience with Vaginismus, writing a book to educate the public (www.unravelledself.com) | KNOWLEDGE USER Will identify knowledge to be disseminated to (1) public, and (2) health-care providers focused on SD/GPP associated with Vaginismus. |
| Non-governmental organizations | ||
| BC Women’s Health Foundation CEO: Cally Wesson | Mandate in knowledge mobilization in women’s health; philanthropy to support women’s health research and clinical care. | KNOWLEDGE USER Provide infrastructure support and in-kind support for mobilization activities, including establishing a graduate award in women’s health research. |
| Options for Sexual Health | Supporting, providing, and promoting inclusive and accessible healthcare and education | KNOWLEDGE USER Lead dissemination of and champion the update of sexual and genito-pelvic pain training to Sex Sense line volunteers. Advise on scale up of training to Planned Parenthood network across Canada |
| Society for Obstetricians and Gynaecologists of Canada (SOGC) Chief Scientific Officer: Jocelynn Cook, PhD, MBA | Represents >4000 obstetricians, gynecologists, family physicians, nurses, midwives, and allied health care professionals in Canada | KNOWLEDGE USER Support development of guidelines for inclusive and gender-sensitive management of sexual dysfunction and genito-pelvic pain |
Connect on social media
Website: brottolab.med.ubc.ca
Instagram: ubcshr and @drloribrotto
Twitter: @ubcshr
Facebook: UBC Sexual Health Research
TikTok: ubcshr
Linkedin: ubcshrl and Lori Brotto
