How We Find Patients: 17 Approaches

1. Extending invitations to Patient and Family Advisory Councils across Canada. This has resulted in geographic diversity of patient attendees at annual symposia.
2. Via Canadian Research Networks with patient partners. This resulted in patient partners contributing to the Phosphodiesterase-5 inhibitors for the Treatment of Secondary Raynaud Phenomenon and Digital Ulcers Rapid Response.
3. Sharing opportunities on patient–partner matching services, including the Patient Advisors Network, the Patient & Researcher Connection Site, and the Cochrane Consumer Network. This has resulted in participation of patients and caregivers with specific lived experience to support Scientific Advice.
4. Approaching patients, clinicians, and researchers who appear in news articles. This resulted in the participation of multiple patients in the Stereotactic Body Radiotherapy for Oligometastatic Cancer HTA.
5. Following groups, connecting with moderators, and connecting with individuals on social media, including Facebook and TikTok. This has resulted in the participation of patients and caregivers with specific lived experiences to support the Post–COVID-19 Condition Level Review and Scientific Advice.
6. Research and direct outreach to patient and community groups unfamiliar with us. This resulted in diverse insights shared for the Considerations for the Use of COVID-19 Rapid Tests Environmental Scan.
7. Calls for input and feedback via Twitter and the Weekly Summary email, reaching more than 10,000 subscribers. This has resulted in 180 unique patient groups contributing to our Reimbursement Reviews over the years.
8. Via advisors at James Lind Alliance Priority Setting Partnerships introducing patients and clinicians to CD-AMC. This resulted in caregiver partners attending the Pediatric Glioma Real-World Evidence multi-stakeholder meeting.
9. With members of our Patient and Community Advisory Committee. This has resulted in patient participation in the 2022–2025 Strategic Plan development and launch, Best Brain Exchange in Real-World Evidence, and in other advisory committees.
10. Regional knowledge offered by Implementation Support Knowledge Mobilization staff located across Canada. This resulted in geographically diverse patient participants taking part in the Peer Support Programs for Youth Mental Health HTA and the Remote Monitoring Programs for Cardiac Conditions HTA.
11. Past speakers, poster presenters, abstract reviewers, and travel grant recipients at annual  symposia. This has resulted in past attendees joining the Symposium Planning Committee, reviewing abstracts, and presenting in plenary and panel sessions the following year.
12. Building relationships with families and organizations who contact us to learn about us or our reviews. This has resulted in us hearing different and varied perspectives. It also resulted in multiple patients participating in the Internet-Delivered Cognitive Behavioural Therapy in the Treatment of Chronic Non-Cancer Pain HTA.
13. Reconnecting with groups who have contributed input or feedback to us. This has resulted in participants taking part in Scientific Advice and Real-World Evidence projects who bring their own lived experience and insights from a broader patient community. It also resulted in a patient expert discussing their own and others’ experiences with the expert committee to produce Guidance on Autologous Hematopoietic Cell Transplant for Patients With Multiple Sclerosis.
14. Reconnecting with past applicants to join committees or past committee members. This resulted in experienced panelists taking part in the Choosing Wisely Canada Expert Panel on Using Labs Wisely and the pan-Canadian Advisory Panel on a Framework for a Prescription Drug List.
15. Collaborating with partner organizations, including Health Quality Ontario, Healthcare Excellence Canada, and the Mental Health Commission of Canada. This resulted in multiple patient and caregivers participating in the Internet-Delivered Cognitive Behavioural Therapy for Major Depressive Disorder and Anxiety Disorders HTA.
16. Open calls for expressions of interest. This has resulted in diverse applicants to contribute broad intersectional knowledge on 3 expert and 2 advisory committees, in addition to the Health Technology Trends to Watch advisory panel and workshop, the Pan-Canadian Stakeholder Panel on Post–COVID-19 Condition, and the Dementia Concerns and Considerations: Panel of People with Lived Experience.

17. Introduction by clinicians or other external experts participating in HTA. This resulted in participation of patients and caregivers with specific lived experiences to contribute to the Intraocular Lenses for Infants with Aphakia HTA.

    We seek patient contributors who:

    • have a direct connection to the health condition or technologies of interest
    • bring a perspective that can add to the diversity of ideas being shared
    • are comfortable sharing their experiences and insights in a supportive setting.

Learn more:

For more information, you can read about the impact of patient involvement.

Contact [email protected] if you have any questions.