Skip to main content
Open access
Research Article
8 February 2017

Health researcher views on comparative effectiveness research and research engagement

Abstract

Aim: To understand researcher capability for and interest in patient-centered comparative effectiveness research (PC-CER), particularly related to engaging with patients/caregivers. Materials & methods: Web-based survey of 508 health researchers recruited via professional health research organizations. Results: Most respondents (94%) were familiar with CER and many (69%) reported having previously conducting some form of CER. Most respondents were familiar with (81%) and interested in (87%) partnering with patients and/or caregivers in research. Resources to assist in training, coordination of partners, guidance in apply for funding and improved infrastructure were commonly cited factors that would help researchers conduct PC-CER. Conclusion: There is a significant opportunity for researchers to engage patients and caregivers as partners in CER. Researchers recognize the need for additional training and expertise to leverage those opportunities.

Supplementary Material

File (suppl_material.pdf)

References

Papers of special note have been highlighted as: • of interest; •• of considerable interest
1.
Rich EC, Esposito D, Kimmey LD, Valenzano CS, Yong PL. Assessing the long-term impact of public investments in comparative effectiveness research: conceptual framework and lessons learned. J. Comp. Eff. Res. 3(6), 657–666 (2014).
•• Describes the larger context of comparative effectiveness funding and patient engagement created through the Affordable Care Act.
2.
Segal C, Holve E. American Recovery and Reinvestment Act-comparative effectiveness research infrastructure investments: emerging data resources, tools and publications. J. Comp. Eff. Res. 3(6), 647–655 (2014).
3.
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 context for the movement toward patient-engaged research.
4.
Institute of Medicine. Initial National Priorities for Comparative Effectiveness Research (2009). www.nap.edu/read/12648/chapter/1.
5.
National Business Group on Health's Position Statement on Comparative Effectiveness (2014). http://www.businessgrouphealth.org/pub/f3144e45-2354-d714-51a2-1cae568ae480.
6.
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).
7.
Alston C. Consumer Attitudes About Comparative Effectiveness. Presented at: National Comparative Effectiveness Summit. Washington, DC, USA, 16–18 September 2013.
8.
Impaq International. Evaluation of ARRA Comparative–Effectiveness Research Dissemination Contract Efforts - Consumer and Clinician Survey Analysis Report: Second Survey Administration and Longitudinal Report (2013). www.ahrq.gov/research/findings/final-reports/arracer/index.html.
9.
Williams SS, Esposito D, Rich EC. Patients and clinicians as stakeholders in comparative effectiveness research: multiple perspectives and evolving roles (2014). www.mathematica-mpr.com/our-publications-and-findings/publications/patients-and-clinicians-as-stakeholders-in-comparative-effectiveness-research-multiple-perspectives.
10.
Sox H, Greenfield S. Comparative effectiveness research: a report from the Institutes of Medicine. Ann. Intern. Med. 151(3), 203–205 (2009).
11.
Gibson TB, Ehrlich ED, Graff J et al. Real-world impact of comparative effectiveness research findings on clinical practice. Am. J. Manag. Care 20(6), e208–e220 (2014).
12.
Shaller D. Patient-Centered Care: What Does It Take? Commonwealth Fund, NY, USA (2007).
13.
Frank L, Basch E, Selby JV. The PCORI perspective on patient-centered outcomes research. J. Am. Med. Assoc. 312(15), 1513–1514 (2014).
14.
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).
• Provides prior study results that were used in formulating and expanding the current study.
15.
Holve E, Segal C. Infrastructure to support learning health systems: are we there yet? Innovative solutions and lessons learned from American Recovery and Reinvestment Act CER investments. J. Comp. Eff. Res. 3(6), 635–645 (2014).
16.
Hamilton Lopez M, Holve E, Rein A, Winkler J. Involving patients and consumers in research: new opportunities for meaningful engagement in research and quality improvement (2012). http://repository.edm-forum.org/cgi/viewcontent.cgi?article=1001&context=edm_briefs.
17.
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).
18.
Domecq JP, Prutsky G, Elraiyah T et al. Patient engagement in research: a systematic review. BMC Health Serv. Res. 14(1), 89 (2014).
19.
Staley K. Exploring Impact: Public Involvement In NHS, Public Health And Social Care Research. National Institute for Health Research (2009). www.invo.org.uk/posttypepublication/exploring-impact-public-involvement-in-nhs-public-health-and-social-care-research/.
20.
Keyhani S, Woodward M, Federman AD. Physician views on the use of comparative effectiveness research: a national survey. Ann. Intern. Med. 153(8), 551–552 (2010).
21.
Weissman JS, Westrich K, Hargraves JL et al. Translating comparative effectiveness research into Medicaid payment policy: views from medical and pharmacy directors. J. Comp. Eff. Res. 4(2), 79–88 (2015).
22.
Comparative effectiveness research and the environment for health care decision-making. National Pharmaceutical Council (2016).http://www.npcnow.org/system/files/research/download/NPC_ChartPack_v04_highres.pdf.
23.
Williams SS, Frost SL. Differences among consumer segments with regard to perceptions of comparative effectiveness research. J. Comp. Eff. Res. 3(6), 617–622 (2014).
24.
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).
25.
Thompson J, Barber R, Ward PR et al. Health researchers’ attitudes towards public involvement in health research. Health Expect. 12(2), 209–220 (2009).
26.
Ward PR, Thompson J, Barber R et al. Critical perspectives on ‘consumer involvement’ in health research epistemological dissonance and the know-do gap. J. Sociol. 46(1), 63–82 (2010).
27.
Ware JH, Hamel MB. Pragmatic trials--guides to better patient care. N. Engl. J. Med. 364(18), 1685–1687 (2011).
28.
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).
• Provides a general perspective on the assessment of stakeholder engagement in comparative effectiveness research.
29.
Kasenda B, Von Elm E, You J et al. Prevalence, characteristics, and publication of discontinued randomized trials. J. Am. Med. Assoc. 311(10), 1045–1052 (2014).
30.
Workman T, Maurer M, Carman K. Unresolved tensions in consumer engagement in CER: a US research perspective. J. Comp. Eff. Res. 2(2), 127–134 (2013).
31.
National Center for Advancing Translational Sciences. About the CTSA program (2016). https://ncats.nih.gov/ctsa/about.
32.
Frank L, Forsythe L, Ellis L et al. Conceptual and practical foundations of patient engagement in research at the Patient-Centered Outcomes Research Institute. Qual. Life Res. 24(5), 1033–1041 (2015).
•• Provides a full context of patient-engaged research from Patient-Centered Outcomes Research Institute's perspective.
33.
Reshape & Innovation Center. Patients Included. https://patientsincluded.org/.
34.
Carolyn Thomas. ‘My open letter to ‘Patients Included’ conferences’ [Blog post], 6 March 2016. http://myheartsisters.org/2016/03/06/my-open-letter-to-patients-included-conferences/.