CIHR Institute of Musculoskeletal Health and Arthritis: Call for Members for the Patient Engagement Research Ambassadors (PERA)
February 2020

Introduction

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 partners and researchers to support discoveries and innovations that aim to improve health and strengthen our health care system.

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.

The Patient Engagement Research Ambassadors (PERA) are an evolution of IMHA’s Research Ambassadors, started in 2003, which consisted of members of the public who either lived with a condition that falls under CIHR – IMHA’s research mandate or who were advocates for individuals living with those conditions, such as family or community members. The Research Ambassadors met twice a year to share information with the Institute and to take information away to share with their respective organizations and communities.

Mandate

PERA will represent the patient oriented research (POR) mandate of IMHA, leading and guiding efforts to ensure patient oriented research principles are incorporated in relevant IMHA activities and funding opportunities. PERA will:

  1. Inform IMHA and CIHR of patient priorities in research, as well as their respective communities about IMHA, CIHR, and their work with POR;
  2. Advocate to benchmark best practice in POR across IMHA’s activities (including priority setting);
  3. Curate quality POR assets for IMHA and the broader CIHR community and create new POR assets to fill gaps;
  4. Evaluate progress of PERA.

Invitation

IMHA is looking to fill 8 positions with individuals who are interested in being a Patient Engagement Research Ambassador for our institute. IMHA will be providing an honorarium (should you wish to receive one) for participation.

To be part of PERA, IMHA will ask that you:

  • Arrive for meetings prepared and ready to participate (meetings may be in person or via phone) and provide IMHA with reasonable notice if you are not able to make a meeting;
  • Participate in discussions, provide feedback, raise issues, and solve problems in an open and collaborative manner;
  • Respect all opinions, even if you disagree with a point of view;
  • Promote and contribute to a collaborative and open environment that is free of personal interests;
  • Provide insights and perspectives 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 information and IMHA initiatives with local organizations and communities.
  • Act as a champion for further patient and public engagement in research and research in general.

If you are interested in this, please email imha-iala@cihr-irsc.gc.ca, with some information about yourself including:

  • Why you’re interested in this role;
  • How you see yourself contributing to PERA (skills, experience, or perspectives);
  • Any involvement with patient organizations or communities (asset, but not a requirement);
  • Where you live.

Please respond by March 16, 2020 and thank you in advance for your interest in participating. If you have any questions about this opportunity, please contact imha-iala@cihr-irsc.gc.ca.

Frequently Asked Questions and Answers for PERA Candidates

  • Is there a defined term for the position (eg 1 year, 3 years)?

    A 2-3 year commitment is appreciated, though we know sometimes life and health intervene.

  • There are openings for 8 positions. Are there any other PERA members already on the team?

    We are starting without any filled positions. There will be up to 8 PERA members in total.

  • How often does the PERA team meet and for how long?

    We anticipate scheduling a group meeting 1-2 times per year, usually in person taking place over 1-2 days. There will also be emails and potentially a webinar in between the scheduled meetings.

  • Travel that is longer than a 2-hour drive is likely not an option for me given my health. Can I attend meetings by conference call?

    We will look for ways to accommodate members if you cannot attend in person.

  • How much is the honorarium?

    This amount is currently being determined.

  • What is the expected time commitment per week /per month?

    We expect most of the dedicated work/time would be around the meetings. We do not anticipate regular contact between meetings, except for a few potential emails and/or a webinar.

  • Would I be assigned any illness to represent or would I represent my current illness?

    You will be asked to bring your own experiences from living with your particular condition, having an experience in the healthcare system, and relaying conversations you have had with others in your community.

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