Background
Polycystic ovary syndrome (PCOS) is a common hormone condition that affects approximately 13% of females. People with PCOS can have different symptoms such as irregular menstrual periods or unwanted hair growth and are at increased risk of developing serious complications like high blood pressure, diabetes, and heart disease.

A group of international PCOS experts have created guidelines on how to diagnose and treat PCOS. These recommendations are based on data published in academic journals and expert opinion. The main strategy recommended for treating PCOS symptoms and for preventing PCOS complications is self-management with lifestyle. Lifestyle management includes exercise, behavioural strategies, healthy eating, and weight management.

The PCOS Guidelines recommend that all people with PCOS should be provided with inclusive, high-quality PCOS tools and resources. A recent survey in Alberta found that less than 10% of people with PCOS have been provided with education or resources about how to manage their chronic condition, and there is a lack of reliable resources available to guide PCOS self-management. Recent studies have found that there are considerable levels of misinformation related to PCOS care being distributed across social media channels. There is considerable need to develop patient-centred self-management tools for PCOS for use in Canada.

The overall goal of this research program is to develop inclusive, accessible, and reliable self-management tools co-created by people with PCOS for people with PCOS. The content in these tools will be based on the evidence recommended in the PCOS International Guidelines for lifestyle management. More can be found here: https://embracelab.ca/

Through this proposed research, we aim to:
1) Determine the experiences of people with PCOS living in Alberta with current resources for PCOS self-management.
2) Co-create high-quality, credible, inclusive, accessible resources and tools for PCOS self-management with people who have lived experience with PCOS.

Roles and Responsibilities
The goal of this patient-oriented research project is to co-create self-management tools with persons with lived experience informed by evidence-based guidelines that address the needs of people living with PCOS in Alberta that are accessible and inclusive. Therefore, it is fundamental to the success of this project that people living with PCOS who have diverse perspectives and backgrounds are involved in every stage of the proposed research as equal and active research partners. To do this, we will be using the Canadian Institutes of Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) framework to guide patient engagement throughout the study. This framework has four guiding principles: mutual respect, co-build, inclusiveness, and support.

We are working with the Alberta SPOR SUPPORT Unit (AbSPORU) Patient Engagement Team to establish a Patient Advisory Council to support this research program and build patient co-researcher capacity in women’s health research in Alberta. The AbSPORU Patient Engagement Team has expertise in developing and supporting Patient Advisory Councils.

The Patient Advisory Council will meet monthly on a virtual meeting platform (Zoom Video Communications Inc.) to discuss ongoing project activities and co-develop study tools including participant recruitment materials, survey questions, and focus group and interview guides.

If desired, Patient Advisory Council members will be encouraged to develop research skills through research skill-building workshops facilitated by the AbSPORU Patient Engagement Team on topics including introduction to health research and patient-oriented research, data collection, data analysis, and equity, diversity and inclusion.

Patient co-researchers will be encouraged to collaborate on research aspects based on their interest and availability. Research activities include participant recruitment, data collection, data analysis, and knowledge dissemination including participating as co-authors on conference abstracts and manuscripts.

Time Commitment
The Patient Advisory Council will meet monthly on a virtual meeting platform (Zoom Video Communications Inc.) or in-person based on member preference to discuss ongoing project activities.

Patient partners can expect requests for feedback on study-related materials and can engage in study-related activities as core researchers based on their interest and availability.

The first meeting will be in January of 2025, and the time commitment is for a minimum of 1 year.
Meetings will be scheduled for approximately 1.5 to 2 hours and will occur on evenings or weekends.

Compensation/Reimbursement
Patient co-researchers will be compensated for their time and essential contribution in accordance with the AbSPORU Patient Partner Appreciation Guidelines: https://absporu.ca/resource/patient-partner-compensation-guidelines/
Study related expenses will be reimbursed.

For more information or to express interest
Dr. Jamie Benham
Email: pcos@ucalgary.ca
Phone/Text  403-220-2777