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Patient Engagement in HTA Drug Review Process Helen Mai, CADTH Adam Waiser, HTAPEN, Canadian Cancer Action Network Canadian Expert Patients in Health Technology Conference November 7-8, 2016

Patient Engagement in Drug Review: Helen Mai (CADTH)

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Patient Engagement in HTA Drug Review Process

Helen Mai, CADTH

Adam Waiser, HTAPEN, Canadian Cancer Action Network

Canadian Expert Patients in Health Technology Conference

November 7-8, 2016

Patient Engagement in HTA Drug Review Process

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• Understanding Health Technology

Assessment (HTA)

• Value of Patient Input and Feedback in HTA

process

• Collaborative Projects - Capacity Building

of Patient Engagement & Involvement in

Cancer Drug Reviews

Objectives

Patient Engagement in HTA Drug Review Process

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Drug Access—Who Does What

Health Canada

Regulator (Effect & safety)

CDR (CADTH)

pCODR (CADTH)

Quebec (INESSS)

HTA (Assess value)

Pan Canadian Pharmaceutical Alliance (pCPA)

Price negotiator

F/P/T Ministries of Health and Cancer Agencies

Decision maker/funder

Patient Engagement in HTA Drug Review Process

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• Regulator: How confident can we be that

results are real?

• HTA: How confident can we be in the

magnitude of that benefit and what is its

value?

Understanding evidence for regulatory review

vs health technology assessment

Patient Engagement in HTA Drug Review Process

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Provincial Advisory Group

Submitter

Patient Advocacy Group

Registered Clinician

Review Team

Registered ClinicianProvincial Advisory

GroupPatient Advocacy

Group

pERC

Submitter

INPUT

SUBMISSION

REVIEW

DELIBERATIONS

FEEDBACK

Initial Recommendation

Final Recommendation

CADTH’s pan-Canadian Oncology Drug Review

Expert Committees (CDEC, pERC)

Presented, used in deliberations & reflected

in recommendations

Who Uses Patient Input?

CADTH Review Team

Used to inform protocol & report

Public Drug Plans

Shared with plans and shared at www.cadth.ca

Patient Engagement in HTA Drug Review Process

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pCODR Expert Review Committee’s (pERC) Deliberative

Framework

Clinical Benefit• Effectiveness• Safety• Burden of Illness• Need

Patient Values• Alignment with values

Economic Evaluation

• Cost effectiveness

Adoption and Feasibility

• Economic feasibility (BIA)• Organizational feasibility

Patient Engagement in HTA Drug Review Process

Patient input to CDR & pCODR

Single44%

2 to 431%

5 to 1015%

11+ 10%

137 patient groups submitted to

CDR & pCODR 532 patient input

submissions

June 2010 – June 2016

Many groups responded to multiple calls for patient

input

Patient Engagement in HTA Drug Review Process

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• 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

Why Does Patient Input Matter in HTA?

Health Technology Assessment

Patient Engagement Navigator:

A New Resource

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Patient Engagement in HTA Drug Review Process

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• The Health Technology Assessment Patient Engagement Navigator (HTAPEN) project is a collaboration of the Canadian Cancer Action Network (CCAN) and CADTH

• The HTAPEN project is funded by the Canadian Partnership Against Cancer, with in-kind funding provided by CADTH and CCAN, to develop, identify and support opportunities for patient and caregiver involvement with the pCODR program

How Can We Promote Patient Participation in

Canadian HTA Drug Reviews?

Patient Engagement in HTA Drug Review Process

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A live resource to support and further enhance cancer patient community involvement in the assessment of new cancer drugs.

Key activities of the HTAPEN project:

• Promote patient awareness of pCODR and their role in the HTA process.

• Work directly with patient groups to identify and collect data as well as to prepare the submissions.

• Expand the breadth and improve the quality of resources available to patients.

What is a HTA Patient Engagement Navigator?

Patient Engagement in HTA Drug Review Process

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• Targeted outreach to patient groups after a call for patient input has been announced

• Presentations to organizations and events about the HTAPEN project

• Workshop for Patient Groups: Role of Health Technology Assessment in Cancer Drug Funding Decisions

• Act as a go-between for patient groups to help them connect with the pCODR process

HTAPEN Key Activities

Patient Engagement in HTA Drug Review Process

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HTAPEN Key Activities

Health Technology Assessment E-Bulletin

[email protected]

Patient Engagement in HTA Drug Review Process

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• Provide support that is geared to the specific needs of a patient group

• Provide advice to help groups find patients with relevant experience

• Help patient groups develop survey questions and strategies

• Review previous submissions for ways to improve in the future

• Provide opportunity for feedback and dialogue on patient evidence submission

HTAPEN Key Activities

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Online Resources for Patient Groups

www.ccanceraction.ca

Patient Engagement in HTA Drug Review Process

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• A Guide for Patient Advocacy Groups:

How to provide patient and caregiver input for

a pCODR drug review

• Online CCAN/pCODR narrated presentations

Online Resources for Patient Groups

Patient Engagement in HTA Drug Review Process

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Guidelines, Procedures and Templates

https://www.cadth.ca/pcodr

Patient Engagement in HTA Drug Review Process

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Adam Waiser

HTA Patient Engagement Navigator

(416) 418-5035

[email protected]

HTAPEN Contact Information

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Thank You and Questions?