CIHR Institute of Musculoskeletal Health and Arthritis: Call for members for the Patient Engagement Research Ambassadors (PERA)
Deadline: September 18, 2022
The Canadian Institutes of Health Research (CIHR) is Canada's federal funding agency for health research. CIHR is made up of 13 Institutes – communities of experts in specific areas who collectively support a broad spectrum of biomedical, clinical, and health systems research, and the social, cultural and environmental factors that affect the health of Canadians. CIHR collaborates with patients, partners and researchers to support the discoveries and innovations that improve our health and strengthen our health care system.
One of CIHR’s 13 Institutes, the Institute of Musculoskeletal Health and Arthritis (IMHA), supports research to help active living, mobility, and craniofacial health; and addresses causes, prevention, screening, diagnosis, treatment, and support systems to lessen suffering for conditions related to bones, joints, muscles, connective tissue, skin and teeth.
IMHA’s Patient Engagement Research Ambassadors (PERA) represent an evolution of IMHA’s Research Ambassadors, started in 2003, and which consisted of members of the public who either lived with a condition that falls under IMHA’s research mandate or who were advocates for individuals living with those conditions, such as family or community members. Those pioneering Research Ambassadors met twice a year with IMHA staff to share information bidirectionally and where Research Ambassadors suggested what IMHA should focus on and what IMHA could do for the public/patients.
PERA represents the Patient Engagement mandate of IMHA, leading efforts to ensure patient oriented research principles are incorporated in relevant IMHA activities and funding opportunities. PERA members will:
- Inform IMHA and CIHR of patient priorities in research;
- Inform their respective communities about IMHA, CIHR, and their work with PERA;
- Advocate to benchmark best practice in POR across IMHA’s activities (including priority setting);
- Curate quality POR assets (for example, videos, websites etc.) for IMHA and the broader CIHR community and create new POR assets to fill gaps;
- Evaluate progress of PERA.
IMHA is seeking to enhance the diversity of experiences within its PERA group to build a more inclusive representation of patients and caregivers who live with, or represent conditions, related to bones, joints, muscles, connective tissue, skin and teeth. IMHA commits to authentically engage those who have historically been excluded from participating as research partners, by ensuring equity, diversity and inclusion are of central focus in our recruitment to PERA. To this end, we are seeking members who reflect the breadth of intersectionality of the IMHA community (e.g. geography, age, race, language, sex and gender, etc.).
IMHA is also looking to develop meaningful relationships with Indigenous communities across Canada and is seeking PERA members who would be interested in helping IMHA understand the perspective of Indigenous peoples with conditions that fall under the IMHA mandate. We value working with Indigenous partners and commit to ensuring that the unique rights, interests and circumstances of Indigenous Peoples are acknowledged, affirmed and actioned.
PERA members will be provided with an honorarium (should they wish to receive one) for participation. PERA members will be invited to serve initial terms of up to two (2) years and may be reappointed for a second term of up to two (2) years in order to maintain continuity; to a maximum of four (4) consecutive years.
Expectations of PERA members
PERA members are expected to add value to IMHA from a patient (person with lived experience) perspective. This can be manifest in many ways:
- Arrive for meetings prepared and ready to participate (meetings may be in person or virtual) and provide IMHA with reasonable notice if not able to make a meeting;
- Participate in discussions, provide feedback, raise issues, and solve problems in an open and collaborative manner;
- Provide perspective and wisdom by sharing knowledge and experience while considering the knowledge and comments shared by others;
- Respect all opinions, even if disagreeing with a point of view;
- Promote and contribute to a collaborative and open environment that is free of personal interests;
- Provide insights and perspectives from their own lived experiences as well as those drawn from engaging their own communities through a lens to help IMHA achieve its goals;
- Provide both constructive input and criticism;
- Draw upon knowledge, personal and professional networks, and experience to provide input into discussions and decisions;
- Share relevant learning and information and IMHA initiatives with their own local organizations and communities;
- Contribute to ongoing dialogue and project work between formal PERA meetings;
- Act as a champion for further patient and public engagement in research and research in general;
- Treat PERA and CIHR information with appropriate confidentiality;
- Declare all actual, potential or perceived conflicts of interest.
If you are interested in this opportunity, or have any relevant questions, please email email@example.com, with some information about yourself including:
- Why you’re interested in this role;
- How you see yourself contributing to PERA (skills, experience, or perspectives that you are willing to share);
- Any involvement with patient organizations or communities (this is an asset, but is not a requirement);
- Where you live;
- Anything else you think IMHA should know about yourself with respect to this opportunity.
After we receive expressions of interest, we will select some applicants to speak with, and from there, invite some individuals to join PERA. If you submit an expression of interest, you will be contacted and informed of whether or not you are invited to join PERA. The deadline to submit an expression of interest is September 18, 2022. On behalf of IMHA, we thank you in advance for your interest.
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