Patient Partnership in research

1. PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS
December 14, 2018
Montreal
PARTENAIRES PRINCIPAUX
Instituts de recherche en santé
du Canada (IRSC)
Ministère de la Santé et des
Services sociaux du Québec
Fonds de recherche du Québec - Santé
PARTENAIRES UNIVERSITAIRES
Université Laval
Université McGill
Université de Montréal
Université de Sherbrooke

2. Geneviève David, M.Sc. CAPM, MPA (c)
Research Coordinator
Unité de soutien SRAP Québec
Research Project Manager
Centre of Excellence on Partnership with Patient and Public
Chair
National Patient Engagement Working Group - Canada SPOR Units
Alexandre Grégoire, BAA
Patient Coordinator
Unité de soutien SRAP Québec
Patient Project Manager
Centre of Excellence on Partnership with Patient and Public
Mathieu Jackson
Coordinator, School of Partnership
Centre of Excellence on Partnership with Patient and Public
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

3. Objectives
Describe the steps to built and implement a partnership strategy with
patients and the public
• Identify research stages where patient and public can be engaged
• Write an engagement mandate, including roles and responsibilities of the
research partners
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

4. TERMINOLOGY
1: Training Module 201 CEPPP/Unité de soutien SRAP du Québec and DCPP et CIO:UdeM. (2016).
Terminologie de la Pratique collaborative et du Partenariat patient en santé et services sociaux. Montréal,Québec :Université de Montréal
In the following presentation1:
• The term « patient » includes (in this presentation) « family members ».
• The term « healthcare » designates (in this presentation) « healthcare and
social services ».
• Our definition of « patient » : any person having personal experience with a
social situation and/or health problem which causes them to receive
healthcare and social services within public and community networks.
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Pixabay

5. DEFINITIONS
PATIENTS/PUBLIC ENGAGEMENT IN RESEARCH
« Patient engagement is about meaningful collaboration. Patients become patient partners in the
project and can be actively engaged in governance, priority setting, developing the research questions,
and even performing certain parts of the research itself. This type of participation helps to ensure that
the research being conducted is relevant and valuable to the patients that it affects. Patient partners
can also collaborate with the research team to summarize or share the results with target audiences
(especially other patients) and with policy makers or other decision makers who may apply the results
in a health or community setting. »2
PATIENT PARTNERSHIP IN RESEARCH
The Patient Partnership Perspective proposes to consider the patient as a full member of the research
team.3
2: http://www.cihr-irsc.gc.ca/f/45851.html, access on May 17, 2018
3: Adapted from Pomey MP, Flora L, Karazivan P, Dumez V, Lebel P, Vanier MC, Débarges B, Clavel N, Jouet E. Sante Publique. 2015 Mar-Apr;1 Suppl:41-50
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

6. PATIENT ENGAGEMENT CONTINUUM
Information Consultation Collaboration Partnership
Continuum 4
• Read
• Inform
E.g. Pamphlet
• Ask questions
• Consult
E.g. Focus group
• Participate together
in research activities
E.g. Priority setting
activity
• Co-leadership
• Co-building
E.g. Write a proposal,
review consent form,
co-built a tool, co-
training
Color legend:
Patient/public
Clinician/Researcher
4: Carmen et al. (2013)
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

7. PATIENT ENGAGEMENT : WHY?
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

8. WHEN ENGAGING PATIENTS/PUBLIC?
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS

9. ENGAGING PATIENTS THROUGHOUT THE DIFFERENT PHASES OF RESEARCH
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

10. 1. AGENDA SETTING AND FUNDING
• Engaging patients to identify research priorities
• e.g., patients engaged in workshops or community
town halls
• Engaging patients to develop a proposal
• e.g., patients engaged as co-researchers
• Engaging patients to funding committees
• e.g., patients engaged as peer reviewers
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Pxhere

11. 2. STUDY DESIGN
• Engaging patients to define how the research project will
be conducted
• e.g., selecting primary outcomes and methods,
addressing ethical considerations
• e.g., patients engaged as co-researchers
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Pxhere

12. 3. RECRUITMENT
• Engaging patients to design recruitment
strategies supporting ethical and effective
enrolment and participation among different
populations (including vulnerable populations)
• Engaging patients to ensure clearer
communication and better understanding for
prospective subjects/participants (e.g.,
designing and reviewing promotional materials,
consent forms)
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Pxhere

13. 4. DATA COLLECTION
• Engaging patients to determine the data to be collected
(if not done earlier in the research process)
• Engaging patients to develop and review data collection
tools
• Engaging patients to collect and analyze data (e.g.,
engaging patients as trained research assistant or co-
researchers to collect and analyze data)
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Pxhere

14. 5. DATA ANALYSIS
• Engaging patients to increase the validity of findings by
reaching consensus on emerging themes and
conclusions, acting as checks and balances on one
another's biases
• e.g., patients engaged as co-researchers or
research assistants
• Engaging patients to validate findings and conclusions
prior to publication, and identify areas of
improvements
• e.g., contextualizing findings, linguistic and
sociocultural insights
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Pxhere

15. 6. RESULT DISSEMINATION
• Engaging patients to design a creative knowledge
translation strategy, which may not have been
considered by researchers
• Engaging patients to write plain-language
publications to ensure the accessibility of
research findings to target audiences (e.g.,
language and terminology, optimal formats)
• Engaging patients to disseminate research findings
in order to improve confidence and buy-in for
research findings among target populations
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Pxhere

16. 7. IMPLEMENTATION
• Engaging patients to mobilize other stakeholders to create
a force for implementation of research findings
• Engaging patients to design the implementation strategy
(e.g., prioritizing the sequence of implementation steps,
being responsive to obstacles that may arise during
implementation)
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Pxhere

17. 8. EVALUATION
• Engaging patients to develop and validate the evaluation framework and evaluation tools
• Engaging patients to conduct the evaluation
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Pxhere

18. BUILDING YOUR STRATEGY
WHY? WHO? WHEN? WHERE? HOW?
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS

19. EXERCISE - 5 MINUTES
On a piece of paper (or the engagement mandate form), write:
• Why you want to engage patient partners in your project ? What are your objectives?
• Where you want to engage patient partners in your project (which steps)?
• Roles and responsabilities of patient partners on your project
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

20. BUILDING YOUR STRATEGY FOR PARTNERSHIP - OVERVIEW
WHY? WHO? WHEN? WHERE? HOW?
• What are my
objectives in
terms of
partnership?
• How many
patient
partners?
• Selection/
Exclusion
criteria?
• Frequency?
• Period of time?
• Stage of
research?
• Level of
engagement
• Roles and
responsabilities
• Mandate
• Coaching
• Recruitment
• Training
• Evaluation
Other considerations
• Remuneration
• Accessible
• Technology
• Tokenism
• Difference in power
• Vulnerable populations
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

21. BUILDING YOUR STRATEGY FOR PARTNERSHIP - Blank
WHY? WHO? WHEN? WHERE? HOW?
Other considerations
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

22. EXAMPLES OF ROLES AND RESPONSABILITIES
The patient partner will:
• Participe in research priority setting;
• Sit on the scientific committee;
• Facilitate group discussions;
• Participate in the interpretation of results;
• Participate in communication and implementation of research results;
• Identify research issues for patients;
• Take part of the evaluation of research process
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
WHY? WHO? WHEN? WHERE? HOW?
• What are my
objectives in
terms of
partnership?
• How many
patient
partners?
• Selection/
Exclusion
criteria?
• Frequency?
• Period of time?
• Stage of
research?
• Level of
engagement
• Roles and
responsabilities
• Mandate
• Coaching
• Recruitment
• Training
• Evaluation
Other considerations
• Remuneration
• Accessible
• Technology
• Tokenism
• Difference in power
• Vulnerable populations

23. WHAT DO SOME OF THESE ROLES MEAN?
• Sharing in the decision-making process/helping with strategic orientations
• Co-building mindset between the patient and the researcher
• Assisting and supporting research teams to integrate patients
• Implementing and assessing Patient-Researcher partnership strategies
• Training and mentoring of patients and researchers
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
WHY? WHO? WHEN? WHERE? HOW?
• What are my
objectives in
terms of
partnership?
• How many
patient
partners?
• Selection/
Exclusion
criteria?
• Frequency?
• Period of time?
• Stage of
research?
• Level of
engagement
• Roles and
responsabilities
• Mandate
• Coaching
• Recruitment
• Training
• Evaluation
Other considerations
• Remuneration
• Accessible
• Technology
• Tokenism
• Difference in power
• Vulnerable populations
• Ensuring project is aligned with patient related
outcomes
• Contributing to the design of research projects
with researcher co-lead(s) and teams

24. WHY? WHO? WHEN? WHERE? HOW?
• What are my
objectives in
terms of
partnership?
• How many
patient
partners?
• Selection/
Exclusion
criteria?
• Frequency?
• Period of time?
• Stage of
research?
• Level of
engagement
• Roles and
responsabilities
• Mandate
• Coaching
• Recruitment
• Training
• Evaluation
Other considerations
• Remuneration
• Accessible
• Technology
• Tokenism
• Difference in power
• Vulnerable populations
CHOOSING THE RIGHT INDIVIDUALS
Favorable attitudes Unfavorable attitudes
Willingness to give back Motivation centered on one’s own interests
Willingness to collaborate
Feeling of being obliged to participate for fear of
affecting one’s own healthcare by refusing OR
participating in the hope of obtaining access to better
healthcare and services
Taking a step back vis-à-vis one’s own experience of life
with illness
Lack of detachment, strong emotion when revisiting
one’s experiences
A clear and coherent re-telling of one’s life story with
illness
Incoherence between the expression of reality and life
objectives (denial, lack of realism, etc.)
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

25. RECRUITMENT CRITERIA
• Demonstrates a high level of self-management for their own care
• Wants to be involved in training of their peers, students and/or healthcare providers
• Acts with a perspective of co-building vs a perspective of advocacy (see table on complementarity
between Patient Partnership and Advocacy)
• Shows good interpersonal communication and interpersonal interaction abilities
• Demonstrates a reflexive attitude thru concrete actions
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
WHY? WHO? WHEN? WHERE? HOW?
• What are my
objectives in
terms of
partnership?
• How many
patient
partners?
• Selection/
Exclusion
criteria?
• Frequency?
• Period of time?
• Stage of
research?
• Level of
engagement
• Roles and
responsabilities
• Mandate
• Coaching
• Recruitment
• Training
• Evaluation
Other considerations
• Remuneration
• Accessible
• Technology
• Tokenism
• Difference in power
• Vulnerable populations
• Reached phase of acceptance of their health
problem
• Can transfer their own experience to other
contexts of care

26. EXERCISE - 5 MINUTES
On a piece of paper (or the engagement mandate form), write:
What is required in terms of engagement?
• When - during the day, on the evenings?
• Frequency - every week/month? How long?
• Where? Online?
• Remuneration?
• Other considerations? Wheelchair accessible/person with a cane?
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

27. FEW BARRIERS TO CONSIDER
• Language issues - Scientific jargon
• Use of acronyms
• Respect of time (and time zones)
• Costs (e.g. travel)
• Workload/pace
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
WHY? WHO? WHEN? WHERE? HOW?
• What are my
objectives in
terms of
partnership?
• How many
patient
partners?
• Selection/
Exclusion
criteria?
• Frequency?
• Period of time?
• Stage of
research?
• Level of
engagement
• Roles and
responsabilities
• Mandate
• Coaching
• Recruitment
• Training
• Evaluation
Other considerations
• Remuneration
• Accessible
• Technology
• Tokenism
• Difference in power
• Vulnerable populations

28. TAKE HOME MESSAGE
• Formal (and recognized) roles in the team (patient
researcher, co-lead, etc.)
• Considered as colleagues (no distinction in the team
activities): participate at the same activities than the
researchers and clinicians (ex: annual scientific forum)
• Have access to technological tools that facilitate exchange
with the other partners in health in the team
• Compensation (concrete acknowledgement of their
contribution and time investment)
• Detailed and clear engagement mandate - open
discussion
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David
Image: Lexpress.fr

29. ACKNOWLEDGEMENTS
Unité de soutien SRAP du
Québec
Centre d’excellence sur le
partenariat avec les patients
et le public (CEPPP)
Table Réseaux universitaires
intégrés de santé (RUIS)
Table Patients Partenaires
Alain Vanasse
Joe Guillaume Pelletier
Ginette Bélec
Marie-Dominique Beaulieu
François Fournier
Émilie Grenier
Bernadette Diedhiou
Rolande Ste-Marie
Directeurs, codirecteurs,
directeurs adjoints et
coordonnateurs des
composantes
Antoine Boivin
Vincent Dumez
Caroline Wong
Sylvain Bédard
Karim Skiredj
Catherine Purenne
Julie Hupé
Julie Bordeleau
Ghislaine Rouly
Et l’équipe de la DCPP
Annie Descôteaux, Alexandre
Berkesse, Mathieu Jackson,
Natalie Papineau, Marie-Pierre
Codsi
Philippe Karazivan
Mathieu Bouchard
Marie-Pierre Gagnon
Mame-Awa Ndiaye
Christine Loignon
Guy Drouin
Matthew Garriss
Anne-Marie Chomat
Katey Wattam
Béatrice Débarges
Annie Poirier
Christian Chabot
Ghislaine Rouly
Guy Poulin
Jaime Borja
Karina Prévost
Mario Di Carlo
René Benoit
Zamzam Akbaraly
Priscille-Nice Sanon
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

30. QUESTION?
Image: Pixabay
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

31. REFERENCES AND TOOLS
• Canadian Institutes of Health Research – Strategy for Patient-Oriented Research http://www.cihr-
irsc.gc.ca/e/45851.html
• Unité de soutien SRAP du Québec : http://unitesoutiensrapqc.ca/
• David, G et Grégoire A (2017) Guide Pratique – Partenariat avec les patients et le public en
recherche
• David, G et Grégoire A (2018) Mandat d’implication des patients partenaires en recherche
• Unité de soutien SRAP du Québec (2018) Principes directeurs - Dédommagement financier des
patients partenaires en recherche
• Boivin, A et al. (2017) Boîte à outils d’évaluation https://ceppp.ca/fr/nos-projets/boite-a-outils-
devaluation/ grâce au soutien financier de l’Unité de soutien SRAP du Québec.
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

32. SUPPLEMENTARY SLIDE
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David

33. SUPPLEMENTARY SLIDE
PATIENT PARTNERSHIP IN RESEARCH : THE FIRST STEPS | Geneviève David