Patient, caregiver and clinician views on engagement in comparative effectiveness research
Abstract
Aim: Describe patient, caregiver and clinician views toward engagement as partners in health research. Materials & methods: Online surveys of patients and caregivers managing rare (n = 560 patients, n = 609 caregivers) or chronic conditions (n = 762 patients, n = 776 caregivers) and practicing clinicians (n = 638). Results: Over half of respondents were unfamiliar with the concept of partnering with researchers but most expressed interest in working in a research partnership. Potential facilitators endorsed were ensuring research is meaningful, applying results in an understandable way, and sharing results. Lack of time is a potential barrier. Clinicians were most interested in helping researchers decide on intervention comparisons and identifying implications for clinical practice. Conclusion: Patients, caregivers and clinicians are interested in research roles that emphasize usefulness and understandability of research.
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References
Papers of special note have been highlighted as: • of interest; •• of considerable interest
1.
Sox H, Greenfield S. Comparative effectiveness research: a report from the Institutes of Medicine. Ann. Intern. Med. 151(3), 203–205 (2009).
2.
D'arcy LP, Rich EC. From comparative effectiveness research to patient-centered outcomes research: policy history and future directions. Neurosurg. Focus 33(1), E7 (2012).
•• Provides a context for patient engagement in comparative effectiveness research.
3.
Selby JV, Forsythe L, Sox HC. Stakeholder-driven comparative effectiveness research: an update from PCORI. J. Am. Med. Assoc. 314(21), 2235–2236 (2015).
4.
Domecq JP, Prutsky G, Elraiyah T et al. Patient engagement in research: a systematic review. BMC Health Serv. Res. 14(1), 89 (2014).
5.
Food and Drug Administration. The Voice of the Patient: A Series of Reports from FDA's Patient-Focused Drug Development Initiative (2016). www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm368342.htm.
6.
National Institute for Health Research. INVOLVE Project (2015). www.invo.org.uk/about-involve/.
7.
Uk Department of Health. Equity and excellence: liberating the NHS (2010). www.gov.uk/government/uploads/system/uploads/attachment_data/file/213823/dh_117794.pdf.
8.
Patient-Centered Outcomes Research Institute. Vision & Mission (2015). www.pcori.org/vision-mission.
9.
Staley K. Exploring Impact: Public Involvement In NHS, Public Health And Social Care Research. INVOLVE, Eastleigh, UK (2009).
10.
Brett J, Staniszewska S, Mockford C et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 17(5), 637–650 (2014).
11.
Forsythe LP, Szydlowski V, Murad MH et al. A systematic review of approaches for engaging patients for research on rare diseases. J. Gen. Intern. Med. 29(Suppl. 3), S788–S800 (2014).
12.
Esmail L, Moore E, Rein A. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J. Comp. Eff. Res. 4(2), 133–145 (2015).
•• Provides practical context for the engagement of patients and stakeholders in research.
13.
Forsythe LP, Ellis LE, Edmundson L et al. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. J. Gen. Intern. Med. 31(1), 13–21 (2015).
• Prior research used for development of the current study.
14.
Williams SS, Esposito D, Rich EC. Patients and clinicians as stakeholders in comparative effectiveness research: multiple perspectives and evolving roles. J. Comp. Eff. Res. 3(6), 573–575 (2014).
15.
Forsythe LP, Frank L, Walker KO et al. Patient and clinician views on comparative effectiveness research and engagement in research. J. Comp. Eff. Res. 4(1), 11–25 (2015).
•• Results from prior research that were used in the development and analysis of the current study.
16.
Concannon TW, Fuster M, Saunders T et al. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J. Gen. Intern. Med. 29(12), 1692–1701 (2014).
17.
National Alliance for Caregiving, American Association of Retired Persons. Caregiving in the US. The National Alliance for Caregiving, Bethesda, MD, USA (2015).
18.
Lowry SJ, Loggers ET, Bowles E, Wagner EH. Evidence gaps in advanced cancer care: community-based clinicians’ perspectives and priorities for CER. Am. J. Manag. Care 18(5 Spec No. 2), SP77–SP83 (2012).
19.
Dubois RW, Reynolds C. Comparative effectiveness research: do employers care? What will they do? What about productivity outcomes? J. Occup. Environ. Med. 53(7), 708–710 (2011).
20.
Cornwell D, Hu M, Esposito D. Public perceptions of comparative effectiveness research and use of evidence in healthcare decision-making. J. Comp. Eff. Res. 3(6), 623–634 (2014).
• Prior research used to inform the current study.
21.
Frank LB, Forsythe LP, Workman TA et al. Patient, caregiver, and clinician use of cer findings in care decisions: results from a national study. J. Comp. Eff. Res. (2017) (Epub ahead of print).
22.
Forsythe LP, Frank LB, Workman TA et al. Health researcher views on comparative effectiveness research and research engagement. J. Comp. Eff. Res. (2017) (Epub ahead of print).
23.
Miles JN, Marshall GN, Schell TL. Spanish and English versions of the PTSD checklist–civilian version (PCL-C): testing for differential item functioning. J. Trauma. Stress 21(4), 369 (2008).
24.
De Leeuw ED. To mix or not to mix data collection modes in surveys. J. Off. Stat. 21(2), 233 (2005).
25.
Dillman DA, Smyth JD, Christian LM. Internet, Mail, And Mixed-Mode Surveys: The Tailored Design Method. John Wiley & Sons, Hoboken, NJ, USA (2009).
26.
Ziegenfuss JY, Burmeister KR, Harris A, Holubar SD, Beebe TJ. Telephone follow-up to a mail survey: when to offer an interview compared with a reminder call. BMC Med. Res. Methodol. 12(1), 32 (2012).
27.
Statacorp. Stata statistical software: release 13. StataCorp LP, College Station, TX, USA. (2013).
28.
Andersen T. The political empowerment of rare disease patient advocates both at EU and national level. Orphanet J. Rare. Dis. 7(2), 1 (2012).
29.
National Organization for Rare Disorders. Rare Disease Information (2016). http://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/?_sm_au_=iVVq6fRrfWMpWnn7.
30.
Terry SF. Disease advocacy organizations catalyze translational research. Front. Genet. 4, 101 (2013).
31.
Landy DC, Brinich MA, Colten ME, Horn EJ, Terry SF, Sharp RR. How disease advocacy organizations participate in clinical research: a survey of genetic organizations. Genet. Med. 14(2), 223–228 (2012).
32.
Terry SF, Terry PF, Rauen KA, Uitto J, Bercovitch LG. Advocacy groups as research organizations: the PXE International example. Nat. Rev. Genet. 8(2), 157–164 (2007).
33.
Costlow MR, Landsittel DP, James AE, Kahn JM, Morton SC. Model for a patient-centered comparative effectiveness research center. Clin. Transl. Sci. 8(2), 155–159 (2015).
34.
Patient-Centered Outcomes Research Institute. Pipeline to Proposal Awards (2015). www.pcori.org/funding-opportunities/pipeline-to-proposal-awards/.
35.
Patient-Centered Outcomes Research Institute. Eugene Washington PCORI Engagement Awards (2016). www.pcori.org/funding-opportunities/eugene-washington-pcori-engagement-awards/.
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Published online: 8 February 2017
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Patient, caregiver and clinician views on engagement in comparative effectiveness research. (2017) Journal of Comparative Effectiveness Research. DOI: 10.2217/cer-2016-0062
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