Improving the Impact of Patient-Engaged Research

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A slide presentation from the June 25, 2013 AcademyHealth Annual Research Meeting.

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Improving the Impact of Patient-Engaged Research

  1. 1. Patient and Clinician Perceptions of Engagement in Research 1 Laura Forsythe, PhD, MPH AcademyHealth Annual Research Meeting June 25, 2013
  2. 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. 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. 4. Study Methods
  5. 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. 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. 7. Methods: Item Format Example 7
  8. 8. Respondents: Patients (N=900) 8 80% 20% Disease group Chronic disease patients Rare disease patients 89% 11% Primary Language English Spanish
  9. 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. 10. Results 10
  11. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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

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