PATIENT ENGAGEMENT IN HEALTH RESEARCH:

MOVING FROM PARTICIPANTS TO PARTNERS

Carolyn Shimmin

Agenda

• What is and isn’t Patient Engagement?

• Why Involve Patients in your Research?

• What are the Levels of Patient Engagement?

• Assessing Expectations and Willingness

• Opportunities to Engage throughout the Research Process

• Tips and Tricks When Planning to Engage

SPOR Definition of Patient-Oriented Research

• Engages patients as partners;

• Focuses on patient-identified priorities;’

• Improves patient outcomes;

• Is conducted by multidisciplinary teams in partnership with

relevant stakeholders; AND

• Aims to apply the knowledge generated to improve

healthcare systems and practices.

What is Patient Engagement in Health Research?

“the meaningful and active involvement of patients in the:

• Governance of research;

• Priority-Setting of research;

• Conducting of research; and

• Knowledge Translation of research”

– CIHR, SPOR definition

PATIENT ENGAGEMENT (PE)

INVOLVE defines public involvement in research as:

research that is carried out “with” or “by” members of the

public rather than “to,” “about” or “for” them.

PATIENT ENGAGEMENT (PE)

• People, informal caregivers and communities with lived

experience of a health issue(s) having a say in decision-

making about the research process.

Excludes the Involvement of Certain Individuals

Who may not identify as “patients” because:

• Unable to access the healthcare system because of geography

and/or systemic barriers

• Living with mental health or substance use issues where taking up

the label of “patient” is associated with stigma

• Refuse to engage or prematurely exit because of unresponsive or

disrespectful care.

Core Belief

The involvement of patients in health research will lead to:

• Improved health outcomes and an enhanced health care

system;

• Increase the quality, appropriateness, acceptability,

transparency, and relevance of research

• Ensure that health research addresses issues of importance

to people with lived experience of a health condition.

Patient Engagement is NOT:

• People being recruited to a clinical trial to take part in the study;

• People completing a questionnaire/survey or participating in a focus

group as part of a research study;

• Science festivals open to public with debates and discussion about

research;

• Open day at a research centre where members of public are invited to

find out about research;

• Raising awareness about research through media; and

• Dissemination of research findings to public.

WHY SHOULD I ENGAGE?

Why Involve Patients and the Public in Research?

• Helping to identify research priorities

• Helping to shape and clarify the research questions

• Helping to ensure the methods/design proposed for the

study are appropriate, acceptable, and sensitive

• Helping to ensure research uses outcomes that have

meaning

• Helping to ensure the language and content of the

information provided to participants in studies is appropriate

and accessible

Why Involve Patients and the Public in Research?

• Helping to increase participation/recruitment in a research

study

• Identifying a wider set of research topics or new areas of

research

• Interpreting research findings

• Ensuring research reflects the concerns, interests and

values of the public and that money and resources are used

efficiently

Levels of patient and public involvement

1. Consultation – obtain feedback or input from patients about different decisions in the research process

2. Involvement – working directly with patients and/or members of the public throughout the research process

— especially at the planning stage

3. Collaboration – actively partnering with patients and/or members of the public in every aspect of the

research process (shared decision-making)

4. Patient & public-directed – this is when patients and/or members of the public actively control, direct and

manage the research process.

Assessing Expectations and Willingness to Engage

Internal

• What is the minimum required level of engagement for this grant

application?

• To what extent does the research team believe that engagement will

improve the outcome of the research?

• What is the potential for patients to influence decision-making within

the research process?

• What is the likelihood the research will fully consider patient input?

• What resources are likely to be available to support PE?

Assessing Expectations and Willingness to Engage

External

• Previous history of engagement

• What inequities exist in relation to the health issue being

researched? Who is affected differently? Who has different

access to services?

• What are the values and expectations?

• What level do people expect to be engaged?

• How would people prefer to be engaged?

Having a Clear Understanding of the Purpose

• Going beyond “We would like to get peoples’ input.”

• What is it intended to achieve and how the population of

interest might contribute to decision-making with regard to

the research process

– Will they have a say in research priorities, questions, methods,

design, outcome measures, interpretation of findings,

dissemination of results?

PATIENT ENGAGEMENT TIPS AND TRICKS

Start Early…

• Involve people as early as possible – consider involving

people in the identification and prioritization of the research

topic and the development of the research question

Understand Who You Want to Engage…

• What current health inequities exist in the area of research I

will be looking at?

• Are people living with this issue differently affected

dependent on the social locations in which they inhabit?

• Do people living with this health issue face different

geographical and systemic barriers to accessing healthcare

services?

• How will I make sure diverse perspectives are represented in

decision-making processes?

Address Barriers/Challenges to Engagement

• Language

• Low-literacy

• Visual or hearing impairments

• Learning difficulties

• Chronic health conditions

• Geographical

• Systemic

Be Clear About Expectations

• Why are you asking people to get involved?

• What is expected of them?

• How much of a time commitment will it be?

• What can they expect from you?

• What are the aims of the project?

• What are everyone’s expectations?

• Where will people have a say in decision-making?

IMPORTANCE OF SAFE SPACES

Physical Safety: Ensuring everyone feels safe in the environment

where we meet, as well as our physical presence and actions.

Emotional & Psychological Safety: Interpersonal communication

(verbal & non-verbal) needs to be respectful and empathetic.

Build a Budget for Involvement

• Compensation for contribution to research project

• Transportation

• Caregiving

• Parking

• Food and beverages

• Accessible space rental

• Care attendants

• Supports (i.e. Elders, counselors, etc.)

Relationship Building

• Trust

• Respect

• Compassion

• Self-awareness

Group Discussion Questions

Thinking about your Quick Strike project:

• Where are there opportunities for people with lived

experience of a health issue, informal caregivers, family,

friends and/or communities to be involved in decision-

making around the research process?

• At what level of involvement?

• What would be the purpose of involvement?

• Who would you involve and what resources would you need?

Questions?

Carolyn Shimmin

Patient and Public Engagement Lead

Knowledge Translation platform

George and Fay Yee Centre for Healthcare Innovation

(p): 204-930-6089

(e): cshimmin@exchange.hsc.mb.ca

(t): @CarolynShimmin