Patient Engagement in Health

Research

Jonathan Dyer, MSSU Patient Engagement Coordinator

Introductions

• The Maritime SPOR SUPPORT Unit (MSSU) is dedicated to supporting patient-oriented research and health services decision-making in the Maritimes.

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Outline

Definitions

Foundations of Patient Engagement

General Principles and Methods

Challenges and Considerations

Questions and Discussion

Administrative Data

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MSSU Seminar Series Patient Engagement

Meaningful and active bi-directional collaboration in governance, priority setting, research, and knowledge translation. (CIHR, 2015)

Other Common References:

•Patient involvement

•Patient participation

•Patient collaborating

•Patient consultation

•Patient partnerships

Administrative Data

Patient:

An overarching term that includes individuals with personal experience of a health issue and informal caregivers, including family and friends. (CIHR, 2015)

Patient vs. Public

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Privacy

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Key Institutional Leadership

CIHR

PCORI

INVOLVE

Health Authorities

Administrative Data

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Evidence in the Literature

Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: A systematic review.

Health Services Research. [Online] 2014; 14(89):1-9. Available from: http://www.biomedcentral.com/1472- 6963/14/89

Why Include Patients?

Requirement

Democratic Accountability

Patient Experience as a form of evidence

Applicability of findings/Improved outcomes

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Common Challenges

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General attitudes of researchers and patients

Tokenistic involvement

Difficulty recruiting

Patient groups dominated by specific individuals

Lack of support from research funders

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General Principles

• Foundation to success

• Cross cultural and economic boundaries

• Apply to all participants

• Without clear intent and common values, engagement can be harmful.

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Spectrums of Engagement

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Spectrums of Engagement

What Is Appropriate?

• What is your rationale for engaging?

• What decision is there to be made?

• Who are the participants?

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Image source: http://www.sosyaldusunce.com/kimin-onceligi-kimin-mantigi/

Common Methods

Patient Representatives

Focus Groups World Café

Advisory Groups Governing Panels Consultations

Surveys

Context-Dependent Methods

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Patient Engagement or Qualitative Research?

15 Image source: http://download.hweb.sk/2015/05/27/hatekony-a-borrak-ellen-a-modositott-herpeszvirus/

• Research done with or by the public, not to, about, or for them.

• Involved in planning or advising (e.g. helping develop protocol or information sheet, member of advisory group, co-applicant, etc.)

• Acting as advisers, providing knowledge and expertise based on their own health experience.

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Engagement vs. Participation

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Overview

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Helpful Hints

Early Engagement

• “Buy-in” is always a challenge

• Time allocation is key

• Pre Engagement

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Continuous Engagement

• Not typically a one-off engagement opportunity

• Best practice engages at each stage of the research process

• Builds capacity and increases patient impact

• Research teams benefit with informed patient participants

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Recruiting Patients

Members of the public get involved in research for a variety of personal

and social reasons. For some, these are linked to personal experiences

of health or social care services and a desire to bring about change in

the quality of care or to improve treatments either for themselves or for

others with a similar condition. For others it might be a way to have a

‘voice’ and influence the processes that affect people’s lives or it might

be to influence research by giving something back and helping other

through their involvement.

-INVOLVE, 2015

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Hard-to-Reach Patients

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• Engaged patients typically have the time, social support, education, and financial security to do so

• Recruitment strategies must ensure a balanced perspective

• Design study logistics with patient in mind

Incentives and Compensation

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• No standard rate

• Support for travel, parking, childcare are common

• Must minimize financial barrier for participating

• Regardless of amount, it must be made clear

Training Patients

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• Varying levels of education, learning styles, cultures, etc.

• Limited experience translating experiential knowledge into research practice

• Different requirement of experience depending on engagement initiative

Orientating Patients

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• Prep Patients so they can participate effectively on subject matter

• Dependent on the stage of research the engagement occurs

• Orientating research team members is equally as important

Tokenism

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• Common concern and criticism

• Occurs when: – Patients are not provided with the opportunities they were

promised

– When recruitment is not inclusive and representative

– When patients are not supported to participate

• Practice is still evolving, requires a culture shift

• When done properly, any engagement is better than none.

General Considerations

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• Requires time, resources, experience, and motivation

• Consider the goal of the engagement

• Each initiative requires unique considerations

Jonathan Dyer

Patient Engagement Coordinator Maritime SPOR Support Unit www.spor-maritime-srap.ca 5790 University Avenue, Room 221

Halifax, NS B3H 1V7 jonathan.dyer@nshealth.ca 902-473-4546

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Support and Guidance

Research Support Request Form

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Questions

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