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Jornadas #PatientInHTA · Tammy Clifford


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Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017

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Jornadas #PatientInHTA · Tammy Clifford

  1. 1. Zaragoza, 27-28 April 2017 Patient & Public Involvement in HTA: the CADTH perspective Tammy J. Clifford, PhD Chief Scientist and Vice President, Evidence Standards, CADTH PUBLIC HEALTH CONFERENCE 10th anniversary of the Spanish Network of Health Technology Assessment (HTA) Agencies: Insights for collaborative networking Towards Patient and public engagement in HTA
  2. 2. Disclosure • I have been a CADTH employee for 12 years and I oversee CADTH’s Patient Engagement activities • No other financial conflicts • CADTH is funded by federal, provincial, and territorial ministries of health. • Application fees (paid by pharmaceutical companies) for three programs: • CADTH Common Drug Review (CDR) • CADTH pan-Canadian Oncology Drug Review (pCODR) • CADTH Scientific Advice 2
  3. 3. 36 million people 10 million km2 Canada
  4. 4. Canada’s Health Care System • 10 provinces, 3 territories • Regulation of drugs and medical devices: Federal Government responsibility • Delivery of health care: Provincial/Territorial Government responsibility • Universal public coverage for hospital and physician services, including in-patient drugs, medical devices and procedures
  5. 5. How much do we spend on health care? 5 © Canadian Institute for Health Information, 2015. Note: 1 CAD equals approximately 0.67 EURO
  6. 6. Canadians value our health care system(s) • The Canadian Press | November 25, 2012 OTTAWA - Canadians, it seems, love their universal health care. • A new national poll…examined the pride Canadians place in a list of more than a dozen symbols, achievements and attributes. • The online survey … found universal health care was almost universally loved, with 94 per cent calling it an important source of collective pride -- including 74 per cent who called it “very important.”
  7. 7. More than 1/3 of Canadians have gone or have had a family member go without needed health care because of insufficient coverage
  8. 8. © Canadian Institute for Health Information, 2015. How do the provinces and territories compare? 8
  9. 9. HTA in Canada: Drugs vs Devices
  10. 10. About CADTH • Private, not-for-profit corporation. Funded by federal, provincial, and territorial governments. • Conducts health technology assessments on drugs, medical devices, procedures, programs, diagnostics. • 190 employees. Numerous contractors. • Advisory and expert committees.
  11. 11. Embrace evolving successes in patient engagement practices in HTA* CADTH 2015-2018 Strategic Plan; Objective 4:
  12. 12. Why Is Patient Input Important for CADTH? “Not everything that can be counted counts, and not everything that counts can be counted.” • William Bruce Cameron, Sociologist, 1963 14
  13. 13. Why Is Patient Input Important for CADTH? • HTA recommendations will ultimately affect patients for whom the technology is intended • Only patients and their family/caregivers have • day-to-day lived experience with the disease or condition • direct experience with currently available treatments (if applicable) and possibly experience with the technology being reviewed • Patients and their caregivers can provide their perspectives on the most important considerations and outcomes for a new technology 15
  14. 14. Why Engage Patients? 16 HTAi Patient & Citizen Involvement Interest Group www.
  15. 15. How CADTH Engages Patients • Public/patient members sit on Board and committees • Patient groups provide input to drug and device reviews • Patient input to early dialogue with industry • Patient Liaison Forum with umbrella patient groups • Annual broad consultation sessions • Annual CADTH Symposium is “Patients Included” • “Open” Call for Topics
  16. 16. Expert Committees (CDEC, pERC) Patient input presented, used in deliberations & reflected in recommendations Patient Group Input CADTH Review Team Patient input used to inform protocol & report Public Drug Plans Shared with plans and shared at
  17. 17. What we found. Patient Input Summaries CADTH Review Protocols 119 things that matter to patients 89 / 119 included 75% Expert Committee 67 / 119 included 56% 61 / 119 included 50 % Clinical Trials
  18. 18. 22
  19. 19. Medical Device Assessments • Patient interviews to validate key outcomes at protocol development • Systematic review of patient preferences and values • Qualitative research • Patient groups provide feedback on draft report and recommendations Optimal Use Reports to date: - dMMR testing for patients with colorectal cancer - Monitoring atrial fibrillation in cryptogenic stroke patients - Interventions for obstructive sleep apnea - Dialysis modalities for end-stage kidney disease
  20. 20. Expert Committees • Present patient group input to other committee members • non-oncology drugs: 2 public members • oncology drugs: 3 patient members • devices, procedures, tests (non-drug): 1 public member
  21. 21. Engaged as Experts • Process developed with members CADTH Patient Community Liaison Forum • Non-disclosure agreement & paid honoraria • Use known patient groups to find individual with: • Personal, long-term experience with disease, & • Has tried multiple therapies to deal with disease, & • Is aware of other’s experiences: moderated a chat group, answered help lines, led patient group 27
  22. 22. Patient Community Liaison Forum • Build understanding among forum members • Help to identify priorities for patient engagement activities • Facilitate the gathering of feedback on new patient engagement processes Members: • Canadian Cancer Action Network • Canadian Organization for Rare Disorders • Best Medicines Coalition • Health Charities Coalition of Canada • CADTH
  23. 23. Challenges & Opportunities (1): • Ensuring meaningful engagement • Not just ‘ticking the box’ • Clarity in language • Patients vs public vs citizen • Engagement vs involvement vs input • Clarity in purpose • For what goal(s), at what stage(s) of HTA process to have most impact • Burden • Representativeness 29
  24. 24. Challenges & Opportunities (2): Perceptions of COI 30
  25. 25. Challenges & Opportunities (3): Evaluating the Impact 31 Health Expectations Published by John Wiley & Sons Ltd., 19, pp.817–827