jornadas #patientinhta · tammy clifford
TRANSCRIPT
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
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
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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
How much do we spend on health care?
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© Canadian Institute for Health Information, 2015.
Note: 1 CAD equals approximately 0.67 EURO
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.” http://www.ctvnews.ca/canada/poll-canadians-are-most-proud-of-universal-medicare-1.1052929
More than 1/3 of Canadians have gone or have had a
family member go without needed health care because
of insufficient coverage
http://www.cfhi-fcass.ca/SearchResultsNews/12-08-09/79805a0a-305d-4efa-94a0-3283b4d90572.aspx
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.
Embrace evolving successes in patient engagement practices in HTA*
CADTH 2015-2018 Strategic Plan; Objective 4: https://cadth.ca/sites/default/files/corporate/planning_documents/2015-2018_Strat_Plan_e.pdf
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
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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
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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
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 www.cadth.ca
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
https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-016-0036-9
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
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
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
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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
www.cadth.ca/cadth-patient-community-liaison-forum
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
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Challenges & Opportunities (3): Evaluating the Impact
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Health Expectations Published by John Wiley & Sons Ltd., 19, pp.817–827