Incorporating Patient Perspectives and Experiences in CADTH Reports TAMARA RADER, PATIENT ENGAGEMENT OFFICER CONCURRENT SESSION A3 APRIL 15, 2019
Disclosure • CADTH is funded by federal, provincial, and territorial ministries of health. • Application fees for three programs: • CADTH Common Drug Review (CDR) • CADTH pan-Canadian Oncology Drug Review (pCODR) • CADTH Scientific Advice 1
Why CADTH Engages Patients CADTH seeks patients’ perspectives to improve the quality of Relevance our assessments of medical procedures, devices and drugs. Our recommendations on publically funded procedures, Fairness devices, and drugs, impact Canadian patients. It makes sense that patients and the public be aware of, and involved in, our work. Patients, families and communities can offer insights on the Equity diversity of needs of individuals and health care settings across Canada. Involvement by all stakeholders can help ensure good Legitimacy governance of our processes HTAi Patient & Citizen Involvement Interest Group www. htai.org
Contribute to CADTH Assessments Groups provide Patient Input on specific drugs for: • Common Drug Review • pan-Canadian Oncology Drug Review • CAR-T cell therapies Individuals and/or groups work with CADTH teams for: • HTA/OU Projects (medical devices and procedures) • Horizon and Environmental Scans • Scientific Advice CADTH may also look in academic published literature for patients perspectives and experiences 3
Patient input into CDR and pCODR CDEC / pERC deliberations Patient Input Submissions Critique of economic models 4
Table of contents – CADTH Optimal Use project Clinical trials Interviews with patients Economic model + (or critique of a Feedback model) from Knowledge patient synthesis (review) groups of qualitative literature Ethics review and analysis 5
Patient input into CDR and pCODR Knowing a group’s purpose, mandate, mission or vision all add context to the submission CADTH is interested in how the information was collected. More detail helps the reviewers and committee members. 6
Patient input into CDR and pCODR Help from outside the organization Financial payments from companies or organizations 7
Future directions • Views of patient groups currently involved with CADTH. • Views of patient groups and communities not currently involved with CADTH. • Other types of involvement of and support for patients and patient groups. 8
2018 Listening Exercise for Future Direction 9 CADTH directors Patient Community 4 patient and public Liaison Forum committee members from pERC, CDEC and How can we greater involve HTERP patients, patient 23 patient groups groups and involved with communities in CADTH our work? 9
We Heard Greater Engagement: To Be Supported: • • Meaningful, respectful Travel awards to CADTH engagement symposium much appreciated • • Need for greater diversity of Clear guidance on what is voices helpful or seen as biased • • Greater interaction with expert Awareness raising of CADTH committees and CADTH and role for patient researchers perspectives in assessments • • Involvement in CADTH Help preparing / refining governance patient input • Input and engagement measured to demonstrate impact 10
Towards Best Practices in Patient Evidence • Integrate patient input into the design of research projects, including patient input mechanisms and methods for capturing outcomes meaningfully • Maintain a focus on diseases and the lived experiences of patients, rather than on specific drugs or technologies • Survey or interview your patient population, collate and publish responses 11
Towards Best Practices in Patient Evidence • Invite collaboration from relevant stakeholders, including patient groups • Have patient representatives review submissions • Integrate patients on review committees as experts, not just consumers • Represent patient perspectives on equal footing with other forms of evidence 12
Connect With Us @CADTH_ACMTS linkedin.com/company/cadth slideshare.net/CADTH-ACMTS youtube.com/CADTHACMTS cadth.ca/photoblog requests@cadth.ca 13
Subscribe Sign up at www.cadth.ca/subscribe to get updates sent directly to your inbox. CADTH E-Alerts Calls for stakeholder feedback and patient group input, plus other time-sensitive announcements. New at CADTH Monthly newsletter including a summary of new reports plus corporate news, announcements of upcoming events, and more. CADTH Symposium and Events Updates about our flagship annual Symposium, workshops, webinars and other events. 14
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Additional slides - examples 16
Patient views reflected in MIGS recommendations 17
Patient views reflected in Clinical outcomes chosen 18
Providing a Canadian perspective to add to the Qualitative Synthesis 19
Discussion of patients’ needs when it comes to informed choice - Ethics 20
A comment about assumptions in the discussion section for the whole HTA 21
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