What is patient engagement at CADTH, and how can you get involved?
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CCSN welcomed CADTH’s Patient Engagement Officer Sarah Berglas to hear more about the many aspects in which CADTH involves patients in its work. Bill and Sarah walked through opportunities for patients and others to become involved in CADTH’s work, including: - Providing patient input to CADTH’s pan-Canadian Oncology Drug Review (pCODR) - Involving patients in CADTH’s assessments of medical devices, interventions, diagnostic tests, and procedures - CADTH’s new Patient and Community Advisory Committee and - CADTH’s newly published patient engagement framework. There are other opportunities outside of the formal reviews, as well, and Sarah spoke further about what CADTH heard from its listening exercise with patient groups last fall. Sarah also spoke about how patients will be involved in CADTH’s upcoming annual symposium on April 14-16 in Edmonton. Maureen Smith also joined Bill and Sarah, sharing her experience convening public and patient members on Canadian HTA bodies to discuss our experiences, learn from experts and each other. This is a must-see webinar for the engaged, the curious and the novice!
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What is patient engagement at CADTH, and how can you get involved?
- 1. What is patient engagement at CADTH and how can you get involved? CCSN Webinar | April 4, 2019
- 2. Guest Panelists Maureen Smith Secretary Canadian Organization for Rare Disorders Sarah Berglas Patient Engagement Officer CADTH 2
- 3. 3 Focus for today’s discussion - patient input into public health technology assessments
- 4. Patient input in HTA x-Canada • National processes: – For MOST meds: CADTH’s Common Drug Review (CDR) – For cancer meds: CADTH’s pan-Canadian Oncology Drug Review (pCODR) • Provincial processes: – British Columbia: “Your Voice” program – Ontario: Ontario Public Drug Programs – Quebec: l’INESSS stakeholder input • Hospitals and Private Payers: – Limited opportunities for patient input 4
- 6. 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 6
- 7. CADTH Products and Services
- 9. For Individuals Who Want to Learn About Medical Devices, Procedures, and Drugs 9 Each year, CADTH produces: • 300 Rapid Responses on devices, drugs, and procedures • 60 to 70 drug assessments • 20 Horizon and Environmental Scans • 5+ Large HTA projects • All reports are available, without cost, on our website
- 10. CADTH Annual Symposium • Watch the proceedings at CADTH/ACMTS YouTube • Question or comment using social media #CADTHSymp or on Facebook • Submit an abstract • Join our Abstract Review Committee • Present a poster, give a presentation, or join a panel • Network at the annual Patient Community Meet and Greet 10
- 11. For Organizations and Individuals Wanting to Provide Feedback 11 • Stakeholder Feedback is an opportunity to comment on the clarity and usefulness of draft protocols and assessments, and proposed process changes, including any context or perspectives that might be missing
- 12. For Patient Groups Who Want to Contribute to Patient Input • To CDR and pCODR and the CADTH Common Drug Review and pan-Canadian Oncology Drug Review programs, and for Optimal Use projects (such as CAR T-cell therapies) • Patient, caregiver, and clinician insights build on our understanding of the trial results and how they might play out in Canada. • Individual experiences can also provide new information on outcomes and consequences not captured in the randomized controlled trials or economic models. 12
- 13. For individuals Who Want to Contribute to the Direction of an Assessment 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 13
- 14. For Individual Participation in an Expert Committee 14 Canadian Drug Expert Committee pCODR Expert Review Committee Health Technology Expert Review Panel
- 16. 16
- 18. Listening for Future Direction Greater Engagement: • Meaningful, respectful engagement • Need for greater diversity of voices • Greater interaction with expert committees and CADTH researchers • Involvement in CADTH governance • Input and engagement measured to demonstrate impact To Be Supported: • Travel awards to CADTH symposium much appreciated • Clear guidance on what is helpful or seen as biased • Awareness raising of CADTH and role for patient perspectives in assessments • Help preparing / refining patient input
- 19. Patient and Community Advisory Committee 19 To provide advice on issues relevant to CADTH’s mandate, from the perspectives of those using the Canadian health care system.
- 20. Qs & As 20
- 21. 21
- 22. 22 Canadian Cancer Survivor Network 1750 Courtwood Crescent, Suite 210 Ottawa, ON K2C 2B5 Telephone: 613-898-1871 E-mail jmanthorne@survivornet.ca or mforrest@survivornet.ca Website www.survivornet.ca Blog: http://jackiemanthornescancerblog.blogspot.com/ Twitter: @survivornetca Facebook: www.facebook.com/CanadianSurvivorNet Pinterest: http://pinterest.com/survivornetwork/
Editor's Notes
- Why? We recognize that patients and their families have valuable, lived experience that can contribute to the evidence base for our assessments. Patients, families, and communities can offer insights on the diversity of individual needs and health care settings across Canada. CADTH’s recommendations on publicly funded devices, procedures, and drugs impact Canadian patients. So, it makes sense that patients and the public be aware of, and involved in, our work.
- Our assessments are evidence-informed and provide balanced reporting of known benefits and harms for drugs, and devices and procedures, often in comparison with other treatment alternatives. You can share and discuss our assessments with your health care team. You can use the references listed to find other organizations and authors to learn more.
- Outcome: Approximately 180 posters, presentations, workshops, and panels, are heard and discussed by senior decision-makers in federal, provincial, and territorial departments of health; by decision-makers from drug plans, health authorities, hospitals, and long-term care facilities; by Canadian and international health policy researchers; by health technology agencies’ staff; and by patient and community organizations. Also heard and considered are the questions and comments offered. Patients often have unique perspectives that are valued by the other participants.
- We share draft assessments, recommendations, and included studies for anyone interested to comment on Outcomes: Feedback improves our assessments, which are used by government departments, health authorities, drug plans, hospitals, and long-term care facilities to make funding decisions, or practice or policy changes. Specific to patient engagement, CADTH has extended timelines, created a feedback loop for patient groups to comment on the accuracy of summaries, introduced feedback letters, piloted a health technology assessment patient navigator, run workshops, and created training videos and other resources in response to suggestions from the patient community.
- Using a range of methods — staff experiences, perspectives from support groups, interviews, and surveys — patient groups comment on the disease, treatments, expectations for improved treatments, and any lived experiences using the therapy under review. Each CADTH expert committee has a recommendation — or deliberative — framework appropriate to its mandate and used to consider multiple perspectives and sources of information. Recommendations and advice given by the expert committees rely on data from across their frameworks and do not depend on one source of data or one perspective alone.
- At CADTH, we identify, synthesize, and critique published studies rather than do primary research. Patient and family insights can help direct how published evidence is interpreted and used. We sometimes seek individuals with lived experience to help us plan, contribute to, and share findings of large projects, Scans, Rapid Responses, and other projects. Contributions of individuals are noted in project protocols and reports. Examples: https://cadth.ca/optimal-use-minimally-invasive-glaucoma-surgery-health-technology-assessment Published March 6, 2019 https://cadth.ca/hpv-testing-primary-cervical-cancer-screening, March 2019 https://cadth.ca/mismatch-repair-deficiency-testing-colorectal-cancer-patients August 2016
- In all committees, public or patient members are active participants with committee responsibilities and voting rights. The public and patient members have the respect of their fellow committee members and participate in deliberations. They offer new insight to explore, contradict, or confirm assumptions held by others at the table. Alongside other expert committee members, the patient and public members consider patient perspectives, explore patient needs in relation to public values, and consider how patient needs are reflected in the clinical trial evidence.
- This framework sets out why CADTH engages with patients, families, and communities, with a focus on how CADTH currently engages, and with who, across different programs and processes. We recognize that different opportunities for patient involvement exist between CADTH programs. There is strength in this diversity, as we can be pragmatic in seeking patient insights where and when they are needed, and we can explore the benefits and challenges of using different methodologies for seeking, using, and sharing patient insights and experiences.
- CADTH’s patient engagement team (Sarah Berglas and Tamara Rader) spoke with 24 patient groups, who are regularly contributors to CADTH. Included 10 cancer patient groups, mix of rare and common disease groups, large and small groups. Interviews in Sept / Oct 2018 for ideas to help shape the CADTH 2019-2020 business plan and advisory committee’s terms of reference.
- Nominations opened 28 January until February 24. We received 85 nominations from patients, caregivers and community members from Prince Edward Island, New Brunswick, Nova Scotia, Quebec, Ontario, Manitoba, Saskatchewan, Alberta, British Columbia, and Yukon expressed interest. All Statements of Interest were blinded, read and ranked by at least two individuals, and deliberated upon to create a shortlist for interviews. Interviews are being set-up now, and we hope to confirm the 12 members of the advisory committee by the end of April 2019. Help CADTH understand how its policies and activities will impact patients, families, and communities, and raise awareness of the needs of all of those who use the Canadian health care system, especially the vulnerable and disadvantaged • provide advice on approaches to enhance the transparency of CADTH processes and their performance • provide patient and public perspectives to CADTH in the development of initiatives to improve the appropriate use of drugs and devices across the life cycle of health technologies • provide guidance on initiatives to strengthen engagement with patients, families, and communities across all CADTH programs