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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 [email protected] 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

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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

[email protected]

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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36 million people 10 million km2

Canada

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?

5

© 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

© Canadian Institute for Health Information, 2015.

How do the provinces and territories compare?

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HTA in Canada: Drugs vs Devices

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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Why Engage Patients?

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HTAi Patient & Citizen Involvement Interest Group www. htai.org

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

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

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 (2): Perceptions of COI

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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