Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

Lori Frank, Laura Forsythe, Lauren Ellis, Suzanne Schrandt, Sue Sheridan, Jason Gerson, Kristen Konopka, Sarah Daugherty, Lori Frank, Laura Forsythe, Lauren Ellis, Suzanne Schrandt, Sue Sheridan, Jason Gerson, Kristen Konopka, Sarah Daugherty

Abstract

Purpose: To provide an overview of PCORI's approach to engagement in research.

Methods: The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund patient-centered comparative effectiveness research. Requirements for research funding from PCORI include meaningful engagement of patients and other stakeholders in the research. PCORI's approach to engagement in research is guided by a conceptual model of patient-centered outcomes research (PCOR), that provides a structure for understanding engagement in research.

Results: To understand and improve engagement in research PCORI is learning from awardees and other stakeholders. Those efforts are described along with PCORI's capacity building and guidance to awardees via the Engagement Rubric. PCORI's unique model of engaging patients and other stakeholders in merit review of funding applications is also described. Additional support for learning about engagement in research is provided through specific research funding and through PCORI's major infrastructure initiative, PCORnet.

Conclusion: PCORI requires engagement of stakeholders in the research it funds. In addition PCORI engages stakeholders in activities including review of funding applications and establishment of CER research infrastructure through PCORnet. The comprehensive approach to engagement is being evaluated to help guide the field toward promising practices in research engagement.

Figures

Fig 1
Fig 1
Conceptual model of patient-centered outcomes research

References

    1. Viswanathan, M., Ammerman, A., Eng, E., Garlehner, G., Lohr, K. N., Griffith, D., … Whitener L. (2004). Community-based participatory research: Assessing the evidence. Evidence report/technology assessment (Summary), No. 99. Prepared by RTI–University of North Carolina Evidence-based Practice Center under Contract No. 290-02-0016). AHRQ Publication 04-E022-2. Rockville, MD: Agency for Healthcare Research and Quality.
    1. Cashman, S. B., Adeky, S., Allen, A. J., Corburn, J., Israel, B. A., Montaño, J., … Eng, E. (2008). The power and the promise: Working with communities to analyze data, interpret findings, and get to outcomes. American Journal of Public Health,98(8), 1407–1417.
    1. Whitlock EP, Lopez SA, Chang S, Helfand M, Eder M, Floyd N. AHRQ series paper 3: Identifying, selecting, and refining topics for comparative effectiveness systematic reviews: AHRQ and the effective health-care program. Journal of Clinical Epidemiology. 2010;63(5):491–501. doi: 10.1016/j.jclinepi.2009.03.008.
    1. National Institutes of Health. (2004). From public advocacy to research priorities: NHLBI listens and responds. National Heart, Lung, and Blood Institute. . Accessed April 23, 2014.
    1. Staley, K. (2009). Exploring impact: Public involvement in NHS, public health and social care research. INVOLVE.
    1. Forsythe, L. P., Szydlowski, V., Murad, M. H., Ip, S., Wang, Z., Elraiyah, T. A., … Hickam, D. H. (2104). A systematic review of approaches for engaging patients in research on rare diseases. Journal of General Internal Medicine,3, 788–800.
    1. Frank L, Basch E, Selby J. Viewpoint: The PCORI perspective on patient-centered outcomes research. Journal of the American Medical Association. 2014;312(15):1513–1514. doi: 10.1001/jama.2014.11100.
    1. Shippee, N. D., Domecq-Garces, J. P., Prutsky Lopez, G. J., Wang, Z., Elraiyah, T. A., Nabhan, M., … Murad, M. H. (2103). Patient and service user engagement in research: A systematic review and synthesized framework. Health Expectations, doi:10.1111/hex.12090.
    1. Curtis, P., Slaughter-Mason, S., Thielke, A., Gordon, C., Pettinari, C., & Ryan, K. (2012). PCORI Expert Interviews Project: Final report. Portland, OR: Center for Evidence-based Policy, Oregon Health & Science University. Patient-Centered Outcomes Research Institute.
    1. Deverka PA, Lavallee DC, Desai PJ, Esmail L, Ramsey SD, Veenstra DL, Tunis SR. Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement. Journal of Comparative Effectiveness Research. 2012;1(2):181–194. doi: 10.2217/cer.12.7.
    1. Mullins CD, Abdulhalim AM, Lavallee DC. Continuous patient engagement in CER. Journal of the American Medical Association. 2012;307(15):1587–1588. doi: 10.1001/jama.2012.442.
    1. Workman T, Maurer M, Carman K. Unresolved tensions in consumer engagement in CER: A US Research Perspective. Journal of Comparative Effectiveness Research. 2013;2(2):127–134. doi: 10.2217/cer.13.6.
    1. Concannon, T. W., Fuster, M., Saunders, T., Patel, K., Wong, J. B., Leslie, L. K., Lau, J. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. Journal of General Internal Medicine,29(12), 1692–1701.
    1. Witt, C. M., Chesney, M., Gliklich, R., Green, L., Lewith, G., Luce, B., … Berman, B. M. (2012). Building a strategic framework for comparative effectiveness research in complementary and integrative medicine. Evidence-Based Complementary and Alternative Medicine, 531096. doi:10.1155/2012/531096.
    1. Hoffman A, Montgomery R, Aubry W, Tunis SR. How best to engage patients, doctors, and other stakeholder sin designing comparative effectiveness studies. Health Affairs. 2010;29(10):1823–1841. doi: 10.1377/hlthaff.2010.0675.
    1. Clancy C, Eisenberg J. Outcomes research: Measuring the end results of health care. Science. 1998;282(5387):245–246. doi: 10.1126/science.282.5387.245.
    1. Reeve, B. B., Wyrwich, K. W., Wu, A. W., Velikova, G., Terwee, C. B., Snyder, C. F., … Butt, Z. (2013). ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Quality of Life Research, 22(8), 1889–1905.
    1. Brundage, M., Blazeby, J., Revicki, D., Bass, B., de Vet, H., Duffy, H., … Calvert, M. (2013). Patient-reported outcomes in randomized clinical trials: Development of ISOQOL reporting standards. Quality of Life Research,22(6), 1161–1175.
    1. Rein A, Esmail L, Moore E, Thomas V, Sabharwal R, Gorman M, et al. Evaluative framework for patient engagement in research; evaluating engagement in patient-centered outcomes research. Baltimore: AcademyHealth Annual meeting; 2013.
    1. Forsythe, L. P., Frank, L., Odom Walker, K., Hayes, D., Wegener, N., Weisman, H., … Beal, A. Patient and clinician views on comparative effectiveness research and engagement in research. Journal of Comparative Effectiveness Research, in press.
    1. Forsythe, L., & Frank, L. (Webinar 9 July 2013). Patient and clinician views on CER and engagement in research: A panel discussion on new PCORI survey results. Patient-Centered Outcomes Research Institute. . Accessed April 23, 2014.
    1. Frank L, Sheridan S. Improving the impact of patient engaged research: Recommendations for evaluation milestones. Baltimore: AcademyHealth Annual Meeting; 2013.
    1. Fleurence, R. L., Forsythe, L. P., Lauer, M., Rotter, J., Ioannidis, J. P. A., Beal, A., … Selby, J. V. (2014). Engaging patients and stakeholders in research proposal review: The Patient-Centered Outcomes Research Institute. Annals of Internal Medicine, 161(2):122–130.
    1. Kauffman KS, dosReis S, Ross M, Barnet B, Onukwugha E, Mullins CD. Engaging hard-to-reach patients in patient-centered outcomes research. Journal of Comparative Effectiveness Research. 2013;2(3):313–324. doi: 10.2217/cer.13.11.
    1. Fleurence RL, Curtis LH, Califf RM, Platt R, Selby JV, Brown JS. Launching PCORnet, a national patient-centered clinical research network. Journal of the American Medical Informatics Association. 2014;21(4):578–582. doi: 10.1136/amiajnl-2014-002747.

Source: PubMed

Sponsoren und Mitarbeiter

Krankheiten

Drogeninterventionen

3
Abonnieren