A Systematic Review of Stakeholder Engagement in Comparative Effectiveness and Patient-Centered Outcomes Research

Journal of General Internal Medicine

Volumn 29, Issue 12, 2014, Pages 1692-1701

  Concannon, Thomas W ^a,b,c   Fuster, Melissa ^c   Saunders, Tully ^d   Patel, Kamal ^d   Wong, John B ^b,c,d   Leslie, Laurel K ^b,c,d   Lau, Joseph ^e  

^a RAND CORPORATION   (United States)

^b TUFTS UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c TUFTS UNIVERSITY   (United States)

^d TUFTS MEDICAL CENTER   (United States)

^e BROWN UNIVERSITY   (United States)

Author keywords

research; review; stakeholders

Indexed keywords

COMPARATIVE EFFECTIVENESS; CONSUMER; HEALTH SERVICES RESEARCH; HUMAN; METHODOLOGY; OUTCOME ASSESSMENT; PATIENT CARE; PROCEDURES;

COMPARATIVE EFFECTIVENESS RESEARCH; CONSUMER PARTICIPATION; HEALTH SERVICES RESEARCH; HUMANS; PATIENT OUTCOME ASSESSMENT; PATIENT-CENTERED CARE; RESEARCH DESIGN;

EID: 84939871704     PISSN: 08848734     EISSN: 15251497     Source Type: Journal    
DOI: 10.1007/s11606-014-2878-x     Document Type: Article

References (92)

1. Institute of Medicine. Initial Priorities for Comparative Effectiveness Research. Washington: National Academies Press; 2009.
2. Federal Coordinating Council for Comparative Effectiveness Research. Report to the President and Congress. Washington: US Department of Health and Human Services; 2009.
3. Sox HC, Greenfield S. Comparative effectiveness research: a report from the institute of medicine. Ann Intern Med. 2009;151:203–205.
4. Patient Centered Outcomes Research Institute. http://www.pcori.org. Accessed March 21, 2014.
5. McClellan M, Benner J, Garber AM, Meltzer DO, Tunis SR, Pearson S. Comparative Effectiveness Research: Will it bend the Health Care Cost Curve and Improve Quality? The Brookings Institute: Washington; 2009.
6. Roehr B. More stakeholder engagement is needed to improve quality of research, say US experts. BMJ. 2010;341:c4193.
7. Conway PH, Clancy C. Charting a path from comparative effectiveness funding to improved patient-centered health care. JAMA. 2010;303:985–6.
8. Concannon TW, Meissner P, Grunbaum JA, McElwee N, Guise JM, Santa J, Conway PH, Daudelin D, Morrato EH, Leslie LK. A new taxonomy for stakeholder engagement in patient centered outcomes research. J Gen Intern Med. 2012;27:985–991.
9. Selker HP, Leslie LK, Wasser JS, Plaut AG, Wilson IB, Griffith JL, Tufts CTSI. Tufts CTSI. Clin Transl Sci. 2010;3:56–8.
10. Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;424:1758–72.
11. Moher D, Liberati A, Tetzlaff J, Altman DG. The PRISMA group preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6:e1000097.
12. Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA). http://www.prisma-statement.org. Accessed March 21, 2014.
13. Amico KL, Wieland ML, Weis JA, Sullivan SM, Nigon JA, Sia IG. Capacity building through focus group training in community-based participatory research. Educ Health (Abingdon). 2011;24:638.
14. Ammerman A, Corbie-Smith G, St George DM, Washington C, Weathers B, Jackson-Christian B. Research expectations among African American church leaders in the PRAISE! project: a randomized trial guided by community-based participatory research. Am J Publ Health. 2003;93:1720–1727.
15. Amtmann D, Cook KF, Johnson KL, Cella D. The PROMIS initiative: involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research. Arch Phys Med Rehabil. 2011;92:S12–19.
16. Angstman KB, Bender RO, Bruce SM. Patient advisory groups in practice improvement: sample case presentation with a discussion of best practices. J Amb Care Mgmt. 2009;32:328–332.
17. Austin SA, Claiborne N. Faith wellness collaboration: a community-based approach to address type II diabetes disparities in an African-American community. Soc Work Health Care. 2011;50:360–375.
18. Boutain DM. Collective knowledge sharing as a social justice strategy: the difference it made in a service project about preterm birth disparity. ANS Adv Nurs Sci. 2009;32:E68–80.
19. Boyer BB, Mohatt GV, Pasker RL, Drew EM, McGlone KK. Sharing results from complex disease genetics studies: a community based participatory research approach. Int J Circumpolar Health. 2007;66:19–30.
20. Breslin M, Mullan RJ, Montori VM. The design of a decision aid about diabetes medications for use during the consultation with patients with type 2 diabetes. Pat Educ Couns. 2008;73:465–472.
21. Buckler AJ, Bresolin L, Dunnick NR, Sullivan DC. A collaborative enterprise for multi-stakeholder participation in the advancement of quantitative imaging. Radiology. 2011;258:906–914.
22. Chang DI, Burton A, O’Brien J, Hurley RE. Honesty as good policy: evaluating Maryland’s medicaid managed care program. Milbank. 2003;81:389–414.
23. Chung B, Corbett CE, Boulet B, et al. Talking wellness: a description of a community-academic partnered project to engage an African-American community around depression through the use of poetry, film, and photography. Ethn Dis. 2006;16:S67–78.
24. Chung B, Jones L, Dixon EL, Miranda J, Wells K. Using a community partnered participatory research approach to implement a randomized controlled trial: planning community partners in care. J Health Care Poor Underserved. 2010;21:780–795.
25. Cooley WC, McAllister JW, Sherrieb K, Clark RE. The Medical Home Index: development and validation of a new practice-level measure of implementation of the Medical Home model. Ambul Pediatr. 2003;3:173–180.
26. Corona R, Gonzalez T, Cohen R, Edwards C, Edmonds T. Richmond Latino needs assessment: a community-university partnership to identify health concerns and service needs for Latino youth. J Commun Health. 2009;34:195–201.
27. Crowe JL, Keifer MC, Salazar MK. Striving to provide opportunities for farm worker community participation in research. J Agric Saf Health. 2008;14:205–219.
28. Curran GM, Pyne J, Fortney JC, et al. Development and implementation of collaborative care for depression in HIV clinics. AIDS Care. 2011;23:1626–1636.
29. Davis RM, Hitch AD, Nichols M, Rizvi A, Salaam M, Mayer-Davis EJ. A collaborative approach to the recruitment and retention of minority patients with diabetes in rural community health centers. Contemp Clin Trials. 2009;30:63–70.
30. Egede LE, Ellis C. Development and testing of the multidimensional trust in health care systems scale. J Gen Intern Med. 2008;23:808–815.
31. Fredericks JE, Bunting RF Jr. Implementation of a patient-friendly medication schedule to improve patient safety within a healthcare system. J Healthc Risk Mgmt. 2010;29:22–27.
32. Freysteinson WM. The ethical community consultation model as preparation for nursing research: a case study. Nurs Ethics. 2010;17:749–758.
33. Gallagher LP, Truglio-Londrigan M, Levin R. Partnership for healthy living: an action research project. Nurs Res. 2009;16:7–29.
34. Garretson M, Walline V, Heisler J, Townsend J. New medical school engages rural communities to conduct regional health assessment. Fam Med. 2010;42:693–701.
35. Goins RT, Garroutte EM, Fox SL, Dee Geiger S, Manson SM. Theory and practice in participatory research: lessons from the native elder care study. Gerontology. 2011;51:285–294.
36. Hitchcock K, Appelt K. Sustainable collaboration for community outreach: lessons from the Spanish Access to Literature/Uso Directo (SALUD) project. J Med Libr Assoc. 2008;96:58–60.
37. James S, Arniella G, Bickell NA, et al. Community ACTION boards: an innovative model for effective community-academic research partnerships. Prog Commun Health Part. 2011;5:399–404.
38. Kaplan SA, Calman NS, Golub M, Ruddock C, Billings J. The role of faith-based institutions in addressing health disparities: a case study of an initiative in the southwest Bronx. J Health Care Poor Underserved. 2006;17:9–19.
39. Kaplan SA, Ruddock C, Golub M, et al. Stirring up the mud: using a community-based participatory approach to address health disparities through a faith-based initiative. J Health Care Poor Underserved. 2009;20:1111–1123.
40. Kataoka SH, Fuentes S, O’Donoghue VP, et al. A community participatory research partnership: the development of a faith-based intervention for children exposed to violence. Ethnic Dis. 2006;16:S89–97.
41. Katz JR, Martinez T, Paul R. Community-based participatory research and American Indian/Alaska Native nurse practitioners: a partnership to promote adolescent health. J Amer Acad Nurs Pract. 2011;23:298–304.
42. Kelly PJ, Lesser J, Cheng AL, et al. A prospective randomized controlled trial of an interpersonal violence prevention program with a Mexican American community. Fam Commun Health. 2010;33:207–215.
43. Kim S, Flaskerud JH, Koniak-Griffin D, Dixon EL. Using community-partnered participatory research to address health disparities in a Latino community. J Prof Nurs. 2005;21:199–209.
44. Kogan JN, Bauer MS, Dennehy EB, et al. Increasing minority research participation through collaboration with community outpatient clinics: the STEP-BD community partners experience. Clin Trials. 2009;6:344–354.
45. Laditka JN, Beard RL, Bryant LL, et al. Promoting cognitive health: a formative research collaboration of the healthy aging research network. Gerontology. 2009;49:S12–17.
46. Leape LL, Rogers G, Hanna D, et al. Developing and implementing new safe practices: voluntary adoption through statewide collaboratives. Q Saf Health Care. 2006;15:289–295.
47. Legaspi A, Orr E. Disseminating research on community health and well-being: a collaboration between Alaska Native villages and the academe. Am Indian Alsk Native Ment Health Res. 2007;14:24.
48. Lopez ED, Lichtenstein R, Lewis A, et al. Drawing from Freirian empowerment methods to develop and use innovative learning maps: increasing enrollment of uninsured children on Detroit’s eastside. Health Prom Pract. 2007;8:181–191.
49. McAllister CL, Green BL, Terry MA, Herman V, Mulvey L. Parents, practitioners, and researchers: community-based participatory research with early head start. Am J Pub Health. 2003;93:1672–1679.
50. McGhan WF, Al M, Doshi JA, Kamae I, Marx SE, Rindress D. The ISPOR good practices for quality improvement of cost-effectiveness research task force report. Value Health. 2009;12:1086–1099.
51. McKeithen T, Robertson S, Speight M. Developing clinical competencies to assess learning needs and outcomes: the experience of the CS2day initiative. J Cont Educ Health Prof. 2011;31:S21–27.
52. Meredith LS, Branstrom RB, Azocar F, Fikes R, Ettner SL. A collaborative approach to identifying effective incentives for mental health clinicians to improve depression care in a large managed behavioral healthcare organization. Adm Pol Ment Health. 2011;38:193–202.
53. Noe TD, Manson SM, Croy C, McGough H, Henderson JA, Buchwald DS. The influence of community-based participatory research principles on the likelihood of participation in health research in American Indian communities. Ethnic Dis. 2007;17:S6–14.
54. Peterson TH, Dolan T, Hanft S. Partnering with youth organizers to prevent violence: an analysis of relationships, power, and change. Prog Commun Health Part. 2010;4:235–242.
55. Pfefferle SG, Cooper B, Layton D, Rohrbach S. Early collaboration for adaptation: addressing depression in low-income new mothers. J Health Care Poor Underserved. 2009;20:539–544.
56. Pickard AS, Lee TA, Solem CT, Joo MJ, Schumock GT, Krishnan JA. Prioritizing comparative-effectiveness research topics via stakeholder involvement: an application in COPD. Clin Pharm Ther. 2011;90:888–892.
57. Raja S, Ball M, Booth J, Haberstro P, Veith K. Leveraging neighborhood-scale change for policy and program reform in Buffalo. N Y Am J Prev Med. 2009;37:S352–360.
58. Ray J, White M, Cannon P, Bowen C, O’Rourke K. Implementing the Florida KidCare open enrollment communications campaign: a framework for mobilizing community partners to reduce the number of uninsured children. Int Q Comm Health Educ. 2006;26:365–377.
59. Redwood D, Lanier A, Kemberling M, Klejka J, Sylvester I, Lundgren K. Community-based participatory research in a large cohort study of chronic diseases among Alaska native adults. Prog Commun Health Part. 2010;4:325–330.
60. Redwood Y, Schulz AJ, Israel BA, Yoshihama M, Wang CC, Kreuter M. Social, economic, and political processes that create built environment inequities: perspectives from urban African Americans in Atlanta. Fam Commun Health. 2010;33:53–67.
61. Rhodes SD, Hergenrather KC, Montano J, et al. Using community-based participatory research to develop an intervention to reduce HIV and STD infections among Latino men. AIDS Educ Prev. 2006;18:375–389.
62. Rhodes SD, Hergenrather KC, Vissman AT, et al. Boys must be men, and men must have sex with women: a qualitative CBPR study to explore sexual risk among African American, Latino, and White gay men and MSM. Am J Men’s Health. Mar 2011;5:140–151.
63. Sanchez RJ, Mardekian J, Cziraky MJ, Mullins CD. Developing a collaborative study protocol for combining payer-specific data and clinical trials for CER. J Man Care Pharm. 2011;17:S34–37.
64. Savage CL, Xu Y, Lee R, Rose BL, Kappesser M, Anthony JS. A case study in the use of community-based participatory research in public health nursing. Publ Health Nurs. 2006;23:472–478.
65. Schensul JJ, Robison J, Reyes C, Radda K, Gaztambide S, Disch W. Building interdisciplinary/intersectoral research partnerships for community-based mental health research with older minority adults. Am J Commun Psychol. 2006;38:79–93.
66. Shah ND, Mullan RJ, Breslin M, Yawn BP, Ting HH, Montori VM. Translating comparative effectiveness into practice: the case of diabetes medications. Med Care. 2010;48:S153–158.
67. Spatz ES, Phipps MS, Wang OJ, et al. Expanding the safety net of specialty care for the uninsured: a case study. Health Serv Res. 2012;47:344–362.
68. Spoth R, Redmond C, Clair S, Shin C, Greenberg M, Feinberg M. Preventing substance misuse through community-university partnerships: randomized controlled trial outcomes 4(1/2) years past baseline. Am J Prev Med. 2011;40:440–447.
69. Steinman KJ, Wright V, Cooksey E, Myers LJ, Price-Spratlen T, Ryles R. Collaborative research in a faith-based setting: Columbus congregations for healthy youth. Publ Health Rep. 2005;120:213–216.
70. Stewart AL, Napoles-Springer AM, Gregorich SE, Santoyo-Olsson J. Interpersonal processes of care survey: patient-reported measures for diverse groups. Health Serv Res. 2007;42:1235–1256.
71. Stewart MK, Colley D, Huff A, et al. Participatory development and implementation of a community research workshop: experiences from a community-based participatory research partnership. Prog Commun Health Part. 2009;3:165–178.
72. Stiffman AR, Freedenthal S, Brown E, Ostmann E, Hibbeler P. Field research with underserved minorities: the ideal and the real. J Urban Health. 2005;82:56–66.
73. Stockdale SE, Mendel P, Jones L, Arroyo W, Gilmore J. Assessing organizational readiness and change in community intervention research: framework for participatory evaluation. Ethnic Dis. 2006;16:S136–145.
74. Sullivan M, Bhuyan R, Senturia K, Shiu-Thornton S, Ciske S. Participatory action research in practice: a case study in addressing domestic violence in nine cultural communities. J Interpers Violence. 2005;20:977–995.
75. Tanjasiri S, Tran J, Palmer P, et al. Developing a community-based collaboration to reduce cancer health disparities among Pacific Islanders in California. Pac Health Dialogues. 2007;14:119.
76. Tanjasiri SP, Tran JH, Palmer PH, Valente TW. Network analysis of an organizational collaboration for Pacific Islander cancer control. J Health Care Poor Underserved. 2007;18:184–196.
77. Taylor-Piliae RE, Froelicher ES. Methods to optimize recruitment and retention to an exercise study in Chinese immigrants. Nurs Res. 2007;56:132–136.
78. Weiner J, Aguirre A, Ravenell K, et al. Designing an illustrated patient satisfaction instrument for low-literacy populations. Am J Man Care. 2004;10:853–860.
79. Wennerstrom A, Vannoy SD 3rd, Allen CE. Community-based participatory development of a community health worker mental health outreach role to extend collaborative care in post-Katrina New Orleans. Ethnic Dis. 2011;21(S1):45–51.
80. Wong C, Mouanoutoua V, Chen MJ. Engaging community in the quality of hypertension care project with Hmong Americans. J Cult Divers. 2008;15:30–36.
81. Wong FY, Crisostomo VA, Bao D, et al. Development and implementation of a collaborative, multistakeholder research and practice model on HIV prevention targeting Asian/Pacific Islander men in the United States who have sex with men. Am J Pub Health. 2011;101:623–631.
82. Zoellner J, Connell CL, Santell R, et al. Fit for life steps: results of a community walking intervention in the rural Mississippi delta. Prog Commun Health Part. 2007;1:49–60.
83. NIH. Health Care Systems (HCS) Research Collaboratory. http://grants.nih.gov/grants/guide/rfa-files/RFA-RM-12-002.html. Accessed March 21, 2013.
84. Lieu TA, Au D, Krishnan JA, Moss M, Selker H, Harabin A, Taggart V, Connors A. Comparative effectiveness research in lung diseases and sleep disorders: recommendations from the National Heart, Lung, and Blood Institute workshop. Am J Resp Crit Care Med. 2011;184:848–856.
85. Agency for Healthcare Research & Quality. Comparative Effectiveness Research Portfolio. http://www.ahrq.gov/cpi/portfolios/comparative-effectiveness/index.html. Accessed March 21, 2014.
86. Hartung DMGJ, Fagnan LJ, Davis MM, Stange KC. The role of practice-based research networks in comparative effectiveness research. J Comp Eff Res. 2012;1:45–55.
87. Community-Based Participatory Research [Web page] http://obssr.od.nih.gov/scientific_areas/methodology/community_based_participatory_research/index.aspx. Accessed March 21, 2014.
88. Woolf SH. The 2009 breast cancer screening recommendations of the US Preventive Services Task Force. JAMA. 2010;303:162–3.
89. Patient Centered Outcomes Research Institute. Funding Center. http://www.pcori.org/funding-opportunities/funding-announcements/funding-center/, Accessed March 21, 2014.
90. Patient Centered Outcomes Research Institute. Research We Support. http://www.pcori.org/research-we-support/. Accessed March 21, 2014.
91. Morrato EH, Concannon TW, Meissner P, Shah ND, Turner BJ. Dissemination and implementation of comparative effectiveness evidence: key informant interviews with clinical and translational science award institutions. J Comp Eff Res. 2013;2:185–194.
92. Burke JG, Jones J, Yonas M, Guizzetti L, Virata MC, Costlow M, Morton SC, Elizabeth M. PCOR, CER, and CBPR: alphabet soup or complementary fields of health research? Clin Trans Sci. 2013;6:493–496.