improving the impact of patient-engaged research
DESCRIPTION
A slide presentation from the June 25, 2013 AcademyHealth Annual Research Meeting.TRANSCRIPT
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Patient and Clinician Perceptions of Engagement in Research
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Laura Forsythe, PhD, MPH AcademyHealth Annual Research Meeting June 25, 2013
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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
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Objectives
Describe and compare patient and clinician attitudes about engagement in research
Identify perceived barriers to and facilitators of engagement in research
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Study Methods
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Methods: Survey Development
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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
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Methods: Crowdsourced Survey
Recruitment from existing opt-in panels based on pre-supplied profile information Web based survey Rapid data collection Limited generalizability
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Methods: Item Format Example
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Respondents: Patients (N=900)
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80% 20%
Disease group
Chronic disease patients
Rare disease patients
89% 11%
Primary Language
English Spanish
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Respondents: Primary Care Clinicians (N=750)
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53% 27%
12%
8%
Type of Provider
PhysiciansNurse PractitionersNursesPhysician Assistants
7%
23%
35%
25%
10%
Years in Practice
< 3 Years3 to 9 Years10 to 19 Years20 to 29 Years>30 Years
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Results
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Perceived Value of Research that Measures Things Patients Care About
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87% 87%
0%
20%
40%
60%
80%
100%
Patients Clinicians
% V
ery
/ Mod
erat
ely
Impo
rtan
t
Survey Group
p>0.05
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72% 77%
0%
20%
40%
60%
80%
100%
Patients Clinicians
% S
tron
gly
/ Som
ewha
t Agr
ee
Survey Group *p <0.05
Perceptions that Research Helps Patients Make Better Treatment Decisions
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Perceived Value of Engaging Patients in Research
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86% 72%
83%
0%
20%
40%
60%
80%
100%
CliniciansCliniciansPatients% S
tron
gly
/ Som
ewha
t Agr
ee
Survey Group *p<0.001
“Patients working directly with researchers can improve the value of medical research”
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Perceived Value of Engaging Clinicians in Research
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86% 72%
83%
0%
20%
40%
60%
80%
100%
CliniciansCliniciansPatients% S
tron
gly
/ Som
ewha
t Agr
ee
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”
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Interest in Engaging in Research
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66% 55%
0%
20%
40%
60%
80%
100%
Patients Clinicians
% S
tron
gly
/ Som
ewha
t Agr
ee
Survey Group
*p<0.001
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Barriers and Facilitators of Engagement
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Barriers Facilitators
Patie
nts
• 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%)
Clin
icia
ns
• 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%)
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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
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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.
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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.
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Next Steps
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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
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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
[email protected] www.pcori.org
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