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

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
tammyc@cadth.ca
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. 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. 36 million people
10 million km2
Canada

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. How much do we spend on health care?
5
© Canadian Institute for Health
Information, 2015.
Note: 1 CAD equals approximately 0.67 EURO

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.”
http://www.ctvnews.ca/canada/poll-canadians-are-most-proud-of-universal-medicare-1.1052929

7. 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

8. © Canadian Institute for Health Information, 2015.
How do the provinces and territories
compare?
8

9. HTA in Canada: Drugs vs Devices

11. 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.

13. 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

14. 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

15. 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

16. Why Engage Patients?
16
HTAi Patient & Citizen
Involvement Interest Group
www. htai.org

17. 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

19. 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

21. 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

22. 22
http://healthydebate.ca/2017/04/topic/pharma-patient-engagement

24. 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

25. 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

27. 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

28. 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

29. 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

30. Challenges & Opportunities (2):
Perceptions of COI
30

31. Challenges & Opportunities (3):
Evaluating the Impact
31
Health Expectations Published by John Wiley & Sons Ltd., 19, pp.817–827