Monique A.M. Gignac, PhD Associate Scientific Director & Senior Scientist, Institute for Work and Health;
Affiliate Scientist, Toronto Western Research Institute, University Health Network;
Professor, Dalla Lana School of Public Health, University of Toronto, Toronto, Canada
Patient Engagement from the
Researcher’s Perspective
Monique A.M. Gignac, PhD has none.
2
Conflict of Interest and Disclosures
Patient Engagement in Research from
the Researchers Perspective
...is the term “patient” appropriate?
3
Patient?
Consumers?
Citizens?
Citizen Engagement?
Research Ambassadors?
4
Presentation Objectives
1. Highlight the importance of researchers and people living with
arthritis negotiating their roles early in the research process and
regularly
2. Illustrate the diverse ways that people with arthritis and researchers
can work together.
3. Discuss the importance of:
a. A common agenda
b. Learning one another’s language
c. Understanding research timelines
5
Reports written, published;
may be presented
Conclusions Drawn
Research Themes
Focus Work
Specific research
questions posed
Studies Designed
Data collected
Data analyzed
Knowledge may be transferred
to specific audiences
Audiences/stakeholders may contribute to
design, data collection, analysis
Audiences/stakeholders
assist in translating research
knowledge for practice
Key Audiences/stakeholders identified;
relationships built for ongoing KTE
Audiences/stakeholders
input helps to focus
research questions
Knowledge transfer planned/delivered
with audiences/stakeholders
Courtesy of the Institute for Work & Health (IWH), Toronto, Canada, 2004
Networks & Research Teams
• Funding for large networks is becoming increasingly
common
• May be national/international, multi-disciplinary and
multi-sectoral
• Funders expect a high degree of knowledge translation
and relevance to stakeholders
7
Canadian Arthritis Network (CAN)
• Research and Training program
• Active from 1998 to 2012
• 2 years of legacy funding (2012-2014)
8
Canadian Arthritis Network (CAN)
Research aimed at:
1. Better understanding the causes of arthritis
2. Developing and evaluating new treatments,
therapeutics and interventions
3. Population and community health research
9
Canadian Arthritis Network (CAN)
Research aimed at:
1. Better understanding the causes of arthritis
2. Developing and evaluating new treatments,
therapeutics and interventions
3. Population and community health research
....involved nearly 200 researchers and ~ 1,000
collaborators and partners
10
Can Consumer Model
1. Governance of the Network (e.g., Consumer Advisory Council
(CAC); Research Management Committee; Board of Directors)
2. Strategic planning
3. Training with researchers
4. Creation of information and tools
5. Members of grant projects, grant review committees and
trainees/student review panels
6. Training the next generation of researchers
7. CAN Annual Conference
8. Outreach (e.g., “CAN Cares” public forums)
11
Lessons Learned
A successful relationship takes effort and
resources
12
Lessons Learned
• It’s critical to articulate a common agenda and vision
• Other stakeholders listen to patients (e.g., research
funders, industry, government, clinicians)
• Research and advocacy agendas don’t always mix
well
13
Lessons Learned
Take time to develop a shared language and messages
• The “tentative” language of research can create
frustration among researchers and consumers in
moving forward
14
Lessons Learned
Time: Why does is take sooooooo long to do
research?
15
Lessons Learned: Time
• The grant process is becoming increasingly long and
arduous
• It can be difficult for researchers and consumers to
sustain their interest in a research project over time
• The “honeymoon” period cools rapidly with the work and
time needed for data collection and analysis
• Publication needs can delay getting the messages out
• There’s always another study....
16
And yet…
The researcher-citizen relationship often works
extremely well
17
• Finding the right consumers isn’t always easy
• Need to make an effort to hear from diverse
groups of people with arthritis
• Need to include other types of stakeholders
18
Bringing people together is not the same as
keeping people together
Expect changes in your relationships
Thank you!
19
www.iwh.on.ca
Next Speaker – Amye L. Leong, MBA
www.rheumatology.org 20
2016 ACR/ARHP Webinar
28 February 2016
Nothing About Us Without Us:
Engaging Patients in Rheumatology Research
Amye L. Leong, MBA President & CEO, Healthy Motivation;
Director of Strategic Relations, Bone and Joint Decade,
the Global Alliance for Musculoskeletal Health;
Chair, Leadership Board, Arthritis Foundation CA Central Coast;
OMERACT Patient Research Partner Leader
Amye Leong, MBA, has nothing to disclose.
Conflict of Interest and Disclosures
Key References and Resources
1. Domecq, Juan et al. Patient engagement in research: a systematic review. BioMed Central Open Access, February 2014.
2. Bykerk V, Furst D, Leong A, et al. Establishing a Core Domain Set to Measure Rheumatoid Arthritis Flares: Report of the
OMERACT 11 RA Flare Workshop. J Rheumatol: 2014, Mar; via online 131252.
3. de Wit, Maartin et al. Involving patient research partners has a significant impact on outcomes research: a responsive
evaluation of the international OMERACT conferences. BMJ Open 2013;3:e002241 doi:10.1136/bmjopen-2012-002241
4. Outcome Measures in Rheumatology. www.omeract.org.
5. Mullins, D. et al. Continuous patient engagement in comparative effectiveness research. JAMA. 2012;307(15):1587-1588
6. Canadian Foundation for Healthcare Improvement. Patient and family engagement. http://www.cfhi -
fcass.ca/whatwedo/PatientEngagement.aspx
7. Bingham CO 3rd, Alten R, Bartlett SJ, Bykerk VP, Brooks PM, Choy E, ChristensenR, Furst DE, Hewlett SE, Leong A,
May JE, Montie P, Pohl C, Sanderson TC, Strand V, Woodworth TG; OMERACT RA Flare Definition Working Group.
Identifying preliminary domains to detect and measure rheumatoid arthritis flares: report of the OMERACT 10 RA Flare
Workshop. J Rheumatol. 2011 Aug;38(8):1751-8.
8. Leong, A., Euller-Ziegler, L. Patient Advocacy and Arthritis: Moving Forward, Bulletin of the
World Health Organization. 2004 Feb; 82(2):115-20. E-pub 2004 Mar 16, 2004.
The Early Days: What Did Patient Engagement Look Like?
Rheumatology Patient Engagement 2002
Patient Engagement Today 2002 - 2016
International
•Cochrane Systematic Reviews
•OMERACT Patient Research Partners since 2002
Regional
•EULAR Guidelines & EULAR Network of PRPs
National
•INVOLVE: UK’s National Health Service
•Canadian Foundation for Healthcare Improvement
•USA: PCORI, NIH, AHRQ, FDA & C-PATH: PROMIS
Commercial
•Industry
. . . And growing . . .
OMERACT PRPs in Malaysia 2010
Common language = EXPERIENCE with Rheumatic Disease
Concordance – Discordance with HCPs EXPERTISE
The Experience of Patient Engagement
• Leadership Support
The Experience of Patient Engagement
• Leadership Support
• Goals, Expectations
The Experience of Patient Engagement
• Leadership Support
• Goals, Expectations
• Selection (geographical, diversity, disease duration, severity,
skills, etc.)
The Experience of Patient Engagement
• Leadership Support
• Goals, Expectations
• Selection (geographical, diversity, disease duration, severity,
skills, etc.)
• Mutual training & preparation: Glossary for HPs and patients
The Experience of Patient Engagement
• Leadership Support
• Goals, Expectations
• Selection (geographical, diversity, disease duration, severity,
skills, etc.)
• Mutual training & preparation: HPs and patients
• Logistics support: patient-to-patient, HP-patient
The Experience of Patient Engagement
• Leadership Support
• Goals, Expectations
• Selection (geographical, diversity, disease duration, severity,
skills, etc.)
• Mutual training & preparation: HPs and patients
• Logistics support: patient-to-patient, HP-patient
• Organizational support (recruitment, strategy, fundraising)
The Experience of Patient Engagement
• Leadership Support
• Goals, Expectations
• Selection (geographical, diversity, disease duration, severity,
skills, etc.)
• Mutual training & preparation: HPs and patients
• Logistics support: patient-to-patient, HP-patient
• Organizational support (recruitment, strategy, fundraising)
• Dissemination: authorship, presentations
The Experience of Patient Engagement
• Leadership Support
• Goals, Expectations
• Selection (geographical, diversity, disease duration, severity,
skills, etc.)
• Mutual training & preparation: HPs and patients
• Logistics support: patient-to-patient, HP-patient
• Organizational support (recruitment, strategy, fundraising, etc.)
• Dissemination, authorship, presentations
• Feedback, continuous improvement
The Experience of Patient Engagement
• Leadership Support
• Goals, Expectations
• Selection (geographical, diversity, disease duration, severity,
skills, etc.)
• Mutual training & preparation: HPs and patients
• Logistics support: patient-to-patient, HP-patient
• Organizational support (recruitment, funding, outreach, etc)
• Dissemination, authorship
• Feedback, continuous improvement
Patient Engagement: What It Looks Like
Focused Resources Online
• PCORI www.pcori.org
• OMERACT www.omeract.org
• CISCRP www.ciscrp.org
• Research Involvement and Engagement
www.researchinvolvement.com (open source)
RESOURCES 1. Domecq, Juan et al. Patient engagement in research: a systematic review. BioMed Central Open Access, February 2014.
2. Bykerk V, Furst D, Leong A, et al. Establishing a Core Domain Set to Measure Rheumatoid Arthritis Flares: Report of the
OMERACT 11 RA Flare Workshop. J Rheumatol: 2014, Mar; via online 131252.
3. de Wit, Maartin et al. Involving patient research partners has a significant impact on outcomes research: a responsive
evaluation of the international OMERACT conferences. BMJ Open 2013;3:e002241 doi:10.1136/bmjopen-2012-002241
4. Outcome Measures in Rheumatology. www.omeract.org.
5. Mullins, D. et al. Continuous patient engagement in comparative effectiveness research. JAMA. 2012;307(15):1587-1588
6. Canadian Foundation for Healthcare Improvement. Patient and family engagement. http://www.cfhi -
fcass.ca/whatwedo/PatientEngagement.aspx
7. Bingham CO 3rd, Alten R, Bartlett SJ, Bykerk VP, Brooks PM, Choy E, ChristensenR, Furst DE, Hewlett SE, Leong A,
May JE, Montie P, Pohl C, Sanderson TC, Strand V, Woodworth TG; OMERACT RA Flare Definition Working Group.
Identifying preliminary domains to detect and measure rheumatoid arthritis flares: report of the OMERACT 10 RA Flare
Workshop. J Rheumatol. 2011 Aug;38(8):1751-8.
8. Leong, A., Euller-Ziegler, L. Patient Advocacy and Arthritis: Moving Forward, Bulletin of the
World Health Organization. 2004 Feb; 82(2):115-20. E-pub 2004 Mar 16, 2004.
T h a n k y o u ! ! !
Nothing About Us Without Us:
Engaging Patients in Rheumatology Research
Amye L. Leong, MBA President & CEO, Healthy Motivation;
Director of Strategic Relations, Bone and Joint Decade,
the Global Alliance for Musculoskeletal Health;
Chair, Leadership Board, Arthritis Foundation CA Central Coast;
OMERACT Patient Research Partner
40
Next Speaker – M. Suzanne Schrandt, JD
www.rheumatology.org
41
Patient Engagement Through all Stages
of Research
M. Suzanne Schrandt, JD
Deputy Director of Patient Engagement
42
Conflict of Interest and Disclosures
M. Suzanne Schrandt, JD
Discloses activities with other organizations such as:
Arthritis Foundation, Rheumatoid Arthritis CME and Patient
Partners in Arthritis, 6
Our Mission
PCORI helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community.
Our Review Criteria
Impact of the condition on health of individuals
and populations
Potential for improving care and outcomes
Technical merit
Patient-centeredness
Patient and stakeholder engagement
During a rigorous merit review process, proposals are evaluated to assess:
Study Design/ Implementation
Evaluation
Topic Selection and
Research
Prioritization
Merit Review
We Engage Patients and
Other Stakeholders at Every Step The Engagement Rubric
The rubric is intended to provide guidance to applicants, merit reviewers, awardees, and
engagement/program officers (for creating milestones and monitoring projects) regarding
patient and stakeholder engagement in the conduct of research. It is divided into four
segments:
Planning the Study
Conducting the Study
Disseminating the Study Results
PCOR Engagement Principles
Planning the Study
• Diabetes study: Clinicians who reviewed the initial study
design indicated that clinical practice is quite variable
and suggested that a three-arm approach would be more
appropriate for the study. The study design was revised
accordingly.
• Cancer study: Patient partners determine eligibility
requirements for study inclusion.
Conducting the Study
• Chronic pain study: The informed consent document
is developed with patient partners to make it
understandable to study participants.
• Chronic pain study: Patients and clinicians revise and
shorten survey tool.
• Preeclampsia study: Study team will recruit via a
national network of local health departments and
community health centers, as well as a preeclampsia
advocacy group’s website, and Facebook page.
Disseminating the Study Results
• Chronic Trauma study: The research team will convene
a policy summit with relevant professional societies
during the third year of the study to focus on identifying
ways to speed the implementation of findings into
practice.
• Neurology Study: Patient partners will co-present at
large patient advocacy organization summit.
• Chronic Sain Study: Patient partners co-author
manuscripts, present at scientific and lay conferences,
and share study findings through their networks.
Engagement Principles
• Compensation for patient partners is included in the
budget at an appropriate level.
• Meetings are held at a time and in a location that that
accommodates patient and stakeholder partners.
Compensation is provided for transportation and related
expenses.
• Training and educational opportunities are provided, for
patient, stakeholder, and researcher partners such as
training in human subjects protection.
Putting the Rubric to Work
Greater understanding of engagement
Stronger engagement in
proposals
Strong engagement
during research?
Engagement Officers: Role and
Responsibilities
Position that parallels the Program Officer role
Partners with Program Officers and research teams
to oversee and cultivate engagement throughout the
life of the project
Ensures robust engagement is integrated into
projects from time of contract formation
Participates in ongoing project management activities
Available for assistance and discussion
Gleans promising practices from projects to share
and replicate
Additional Resources
Compensation Framework, http://www.pcori.org/sites/default/files/PCORI-Compensation-Framework-for-
Engaged-Research-Partners.pdf
Sample Engagement Plans, http://www.pcori.org/sites/default/files/PCORI-Sample-Engagement-Plans.pdf
WE-Enact tool and data, http://www.pcori.org/sites/default/files/PCORI-PE-Advisory-Panel-Presentation-
WE-ENACT-Slides-011315.pdf
Find Us Online
www.pcori.org
Association of Rheumatology Health Professionals
www.rheumatology.org 55
Thank you for participating!
Questions: [email protected]