Recruiting Patient Partners
In March 2025, Canada’s Drug Agency (CDA-AMC) launched a Request for Proposals (RFP) funding opportunity to support the quality of rare disease registries. As part of this work, we will convene a small, time-limited evaluation panel to review the submitted full proposals and provide advice on scope, methods, impact, and funding. The review panel will consist of internal staff members, as well as contracted methodology experts and patient partners.
We are seeking a minimum of 2 Patient Partners to participate in the evaluation panel as valued reviewers. As a Patient Partner, your lived experience and patient-centred focus will help us ensure that patient perspectives are considered in the proposal review.
As a Patient Partner, you will be expected to evaluate proposals in a fair, consistent, and transparent manner. The review process will be collaborative and process-driven, involving participation in discussions with a diverse panel of reviewers. Applicants should be aware of a time commitment of up to 45 hours between May 2025 and June 2025, which includes independent review of submitted proposals using a structured scoring rubric, and participation in a virtual deliberation meeting. Participants will be remunerated based on our typical procurement practices, and more details will be available to those selected to move forward. All participants must be able to maintain confidentiality and are required to disclose any potential conflicts of interest prior to the review process.
If this opportunity is of interest to you, please review the eligibility criteria and knowledge and experience details and complete the application with details about yourself, describing how your experience aligns with the Patient Partner role.
Eligibility:
- Experience supporting or living with a rare disease, either as a patient or caregiver
- Ability to work and deliberate in a diverse group setting and appreciate the contributions of those with various backgrounds, skill sets, and experience
- Ability to act with integrity and transparency, independent of specific interests
- Strong English verbal communication skills
Knowledge and Experience:
- Knowledge of and/or direct experience with rare disease patients and/or those with lived experience, including their specific treatment needs and challenges (e.g., board member, staff, or volunteer in a patient organization) (Required)
- Ability to articulate the experience of patients or families living with a rare disease; this could include providing insight into how the proposed improvements might impact patient care, as well as access to treatment and/or care (Required)
- Experience reviewing and evaluating proposals, and/or prior experience participating in a committee, advisory panel, or review board (Asset)
- Awareness of the regulatory, reimbursement, and health technology assessment processes in Canada, as this may help guide registry improvements that could address evidence gaps related to these pathways (Asset)
- Experience with or knowledge of rare disease patient registries (Asset)
- Familiarity with medical and scientific terminology related to rare diseases, registries, and research methodologies (Asset)