Patient and Clinician Perceptions of Engagement in Research

1

Laura Forsythe, PhD, MPH AcademyHealth Annual Research Meeting June 25, 2013

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

Objectives

Describe and compare patient and clinician attitudes about engagement in research

Identify perceived barriers to and facilitators of engagement in research

3

Study Methods

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

Methods: Crowdsourced Survey

Recruitment from existing opt-in panels based on pre-supplied profile information Web based survey Rapid data collection Limited generalizability

6

Methods: Item Format Example

7

Respondents: Patients (N=900)

8

80% 20%

Disease group

Chronic disease patients

Rare disease patients

89% 11%

Primary Language

English Spanish

Respondents: Primary Care Clinicians (N=750)

9

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

Results

10

Perceived Value of Research that Measures Things Patients Care About

11

87% 87%

0%

20%

40%

60%

80%

100%

Patients Clinicians

% V

ery

/ Mod

erat

ely

Impo

rtan

t

Survey Group

p>0.05

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

12

Perceived Value of Engaging Patients in Research

13

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”

Perceived Value of Engaging Clinicians in Research

14

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”

Interest in Engaging in Research

15

66% 55%

0%

20%

40%

60%

80%

100%

Patients Clinicians

% S

tron

gly

/ Som

ewha

t Agr

ee

Survey Group

*p<0.001

Barriers and Facilitators of Engagement

16

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%)

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

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

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

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

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