There are two ways to be actively involved:
- Join a Patient Circle. You will participate in discussions about once a month pertaining to strategic goals and orientations of the Network.
- Get involved in a research team. Researchers need your feedback to make sure research projects are relevant for people living with diabetes.
What can you expect when you become a Patient Partner of the network?
Best practices on how to involve patients in research are being established by many organizations across Canada. As we collaborate together, we defined the following set of guiding principles to promote meaningful contributions from our Patient Partners and respectful collaboration within research teams:
- The structure’s design is supportive, empowering and flexible so patient partners can fully contribute to discussions and decisions.
- You will experience a safe environment that promotes honest interactions, cultural competence, training and education. You will be compensated financially for your involvement.
- This structure brings together a diverse range of patient perspectives and backgrounds.
- Mutual respect:
- The expertise of patients’ lived experience are acknowledged, respected and, mot importantly, valued contributions researchers and practitioners need to (co)-produce the best solutions for people living with diabetes.
- Researchers, practitioners and patients work together from the beginning of any project to identify problems and gaps, set priorities for research and produce practical solutions.
- Core competencies:
- Patients, researchers and practitioners alike build on their current skill set by developing expertise in patient-oriented research and how to contribute and collaborate on research projects and in health system improvement.
What does it mean to be engage and contribute as a patient partner?
Diabetes Action Canada aims to integrate the patient perspective into every step of the research process including developing research questions, defining research objectives, collecting data and evaluating results; however, while some patients have the readiness to contribute as full members of research teams, others may bring a range of expertise such as in ethics or as knowledge brokers. Overall the patients’ roles will vary according to the contributions a patient is prepared to offer.
What are Patient Circles?
Patient Circles are composed of a diverse group of people affected by diabetes from across Canada. Patient Circle members live with diabetes personally (any type) or they are current or previous caregivers to a person with diabetes. Members also bring expertise from other roles they hold in their lives. Circles have 12-16 patient members living with any form of diabetes. The Circles aim for inclusiveness and equal representation of age, gender, location, diabetes type, ethnic background, country of origin, provincial or national, language, professional background, education level, etc.
There are three (3) Patient Advisory Circles:
- The Collective Patient Circle (10-15 people) aims to have an approximately equal representation from people whose lives are affected by type 1 and type 2 diabetes. People affected by other types of diabetes are also welcome to participate.
- The Francophone and Immigrant Patient Circle (6-8 people) aims to have an equal representation from people whose lives are affected by type 1 and type 2 diabetes.
- The Indigenous Patient Advisory Circle (8-15 people) aims to have an equal representation from people whose lives are affected by type 1 and type 2 diabetes.
What does it mean to be part of the Collective Patient Circle?
Members of the General Patient Circle (10-15 people) will meet approximately 8 times per year to discuss strategic goals of the Circles. There will be at least one in-person meeting, and the other meetings will be by telephone or another method suitable for everyone (to be discussed among members). The meetings will last about 90 minutes and will be in English.
What does it mean to be part of the Francophone and Immigrant Patient Circle?
Members of the Francophone Patient Circle (6-8 people) will meet approximately 4 times per year to discuss goals and issues specific to this Circle. There will be at least one in-person meeting, and the other meetings will be by telephone or another method suitable for everyone (to be discussed among members). The meetings will last about 90 minutes and will be in French.
What does it mean to be part of the Indigenous Patient Circle?
Members of the Indigenous Patient Circle (6-8 people) will meet approximately 4 times per year to discuss goals and issues specific to this Circle. There will be at least one in-person meeting, and the other meetings will be by telephone or another method suitable for everyone (to be discussed among members). The meetings will last around 90 minutes and the language of communication will be determined among members once the Circle is fully assembled.
How will the Patient Circles connect with each other?
Two (2) members from each of the Francophone & Immigrant and Indigenous Circles will also be members of the Collective Patient Circle (4 members in total who will be part of the 10-15 members). These designated patients will represent the interests of their respective circles as well as liaise between the General Patient Circle and their specific Circles.
Patient Partners helping guide Diabetes Action Canada’s operation and administration
Patient partners can also be a part of the Steering Council and Research Committee to collaborate with Diabetes Action Canada administrators, researchers and practitioners in directing (steering) the organization, its operations and its research objectives. Patient partners make sure DAC’s priorities and activities all remain aligned and relevant to people living with diabetes. Some examples of activities in this regard are:
- Advising on internal policies regarding – communication, compensation for patients, roles and expectations
- Working on the Steering Committee – keeping Diabetes Action Canada on the patient-oriented track
Patient Partners as Research Team Members
As the field of patient-oriented research grows, research teams are looking for Patient Partners to collaborate throughout the research process in such areas as priority setting, study design, analysis and knowledge translation. The roles of Patient Partners in this capacity differs based on the needs of research teams and will be defined prior to engagement. Some examples include, Research Program co-lead, Research Study advisor, Governance committee member, Workshop Planning . Members of the Patient Circles may also be involved directly with research teams by bringing expertise from their lived experience with diabetes to research projects. Patients can provide expertise in many ways, including their experience of living with diabetes and, if applicable, complications; experience with the health care system (care delivery) and experience with specific treatments (drugs, surgeries, devices). Advising on research projects includes discussing research projects at Patient Circle meetings to provide guidance to researchers and help make the research focus more relevant to patients.
Are Patient Partners compensated?
Yes. In recognition for their time spent and valuable expertise, members of the Patient Circles will be compensated for their participation and contribution
For Information on our Patient Compensation Policy please Click HERE
For Information on SPOR Network Directors Task Force -Patient Engagement Compensation Policy Please Click HERE