This document summarizes a survey of patients and clinicians on their perceptions of engagement in research. The survey found that most patients and clinicians felt engagement could improve research value. Many patients and clinicians expressed interest in direct engagement. However, barriers like lack of time and concerns about privacy existed. Facilitators included helping others and financial compensation. The study provides initial evidence on perceptions but has limitations like generalizability. It concludes engagement strategies should address barriers and link engagement to improved patient care and outcomes.

1. Patient and Clinician
Perceptions of Engagement in
Research
1
Laura Forsythe, PhD, MPH
AcademyHealth Annual Research Meeting
June 25, 2013

2.  Improved research recruitment and retention rates
(Edwards et al. 2011)
 Enhanced trust between researchers and participants
(Decker et al. 2010; Edwards et al. 2011; Staniszewska et al . 2007)
 Improved content and construct validity of measures
(Cashman et al. 2008; Cotterell 2008)
 Improved patient understanding of results
(Chalmers 1995; McCauley et al. 2001; Doyle 2010)
 Increased relevance of research results to patients
(summarized in Nass et al. 2012)
Patient Engagement in Research

3. Objectives
Describe and compare patient and clinician
attitudes about engagement in research
Identify perceived barriers to and facilitators of
engagement in research
3

4. Study Methods

5. Methods: Survey Development
5
Identify Existing
Survey Items
Develop New
Survey Items
• Perceived value of
engagement
• Interest in engagement
• Barriers and facilitators
for engagement
Partner with Patients
and Clinicians for
Feedback
• Survey concepts
• Item wording
• Survey layout
• Dissemination

6. Methods: Crowdsourced Survey
Recruitment from existing opt-in panels based on
pre-supplied profile information
Web based survey
Rapid data collection
Limited generalizability
6

7. Methods: Item Format Example
7

8. Respondents: Patients (N=900)
8
80%
20%
Disease group
Chronic disease patients
Rare disease patients
89%
11%
Primary Language
English Spanish

9. Respondents: Primary Care Clinicians
(N=750)
9
53%
27%
12%
8%
Type of Provider
Physicians
Nurse Practitioners
Nurses
Physician Assistants
7%
23%
35%
25%
10%
Years in Practice
< 3 Years
3 to 9 Years
10 to 19 Years
20 to 29 Years
>30 Years

10. Results
10

11. Perceived Value of Research that Measures
Things Patients Care About
11
87% 87%
0%
20%
40%
60%
80%
100%
Patients Clinicians
%Very/ModeratelyImportant
Survey Group
p>0.05

12. 72%
77%
0%
20%
40%
60%
80%
100%
Patients Clinicians
%Strongly/SomewhatAgree
Survey Group
*p <0.05
Perceptions that Research Helps Patients
Make Better Treatment Decisions
12

13. Perceived Value of Engaging Patients in
Research
13
86%
72%
83%
0%
20%
40%
60%
80%
100%
CliniciansCliniciansPatients
%Strongly/SomewhatAgree
Survey Group
*p<0.001
“Patients working directly with
researchers can improve the
value of medical research”

14. Perceived Value of Engaging Clinicians in
Research
14
86%
72%
83%
0%
20%
40%
60%
80%
100%
CliniciansCliniciansPatients
%Strongly/SomewhatAgree
Survey Group
*p<0.001
“Patients working directly with
researchers can improve the
value of medical research”
“Providers working directly with
researchers can improve the
value of medical research”

15. Interest in Engaging in Research
15
66%
55%
0%
20%
40%
60%
80%
100%
Patients Clinicians
%Strongly/SomewhatAgree
Survey Group
*p<0.001

16. Barriers and Facilitators of Engagement
16
Barriers Facilitators
Patients
• Lack of time (43%)
• Concerns about privacy
(36%)
• Work, school or caregiving
commitments (33%)
• Helping others with their medical condition
(68%)
• Learning about their health (63%)
• Helping the next generation (57%)
• Getting paid (56%)
• Making research more meaningful to
patients (49%)
Clinicians
• Lack of time (79%)
• Lack of payment (47%)
• Lack of research training
(35%)
• Helping patients receive better care (79%)
• Getting paid (78%)
• Contributing to scientific knowledge (61%)
• Making research more meaningful for
patients (61%)
• Improving professional satisfaction (52%)
• Helping researchers decide what to study
(43%)

17. Strengths and Limitations
Strengths
 Exploration of understudied topic areas
 Inclusiveness of understudied populations: Spanish
speakers, rare-disease patients
Limitations
 Generalizability
 Self-reported data
 New survey items testing complex constructs
17

18. Conclusions
Most patients and clinicians agreed that
engagement can improve the value of health
research.
Many patients and clinicians reported interest in
engaging in research themselves.
Strategies to facilitate both patient and clinician
engagement:
 Establish link between engagement and patient care.
 Provide financial compensation.
 Minimize time burden.
18

19. Implications
Find ways to help those who are interested in
engaging in research to be involved in meaningful
ways.
Develop evidence on the value of engagement in
research, particularly for improving patient
outcomes.
Address barriers to engaging patients and primary
care clinicians in research.
19

20. Next Steps
20
Foundational Elements
• Awareness of methods for PCOR
• Valuing patient perspective
• Interest in PCOR
• Ways for patients and researchers to partner
• Resources and infrastructure
• Policies/governance

21. Thank you!
Acknowledgements
 Patient, caregiver, and clinician partners
 Collaborators: Lori Frank, Kara Odom Walker, Diane
Hayes, Sue Levine, Ayodola Anise, Natalie Wegener,
Gail Hunt, Anne Beal, Harlan Weisman, Freda Lewis Hall
Laura Forsythe, PhD, MPH
lforsythe@pcori.org
www.pcori.org
21