Facilitating comparative effectiveness research in cancer genomics: Evaluating stakeholder perceptions of the engagement process

Journal of Comparative Effectiveness Research

Volumn 1, Issue 4, 2012, Pages 359-370

  Deverka, Patricia A ^a   Lavallee, Danielle C ^a   Desai, Priyanka J ^a   Armstrong, Joanne ^b   Gorman, Mark ^c   Hole Curry, Leah ^d   Oleary, James ^e   Ruffner, B W ^f   Watkins, John ^g   Veenstra, David L ^h   Baker, Laurence H ⁱ   Unger, Joseph M ^h   Ramsey, Scott D ^h  

^a Center for Medical Technology Policy   (United States)

^b AETNA   (United States)

^c National Coalition for Cancer Survivorship   (United States)

^d Health Care Authority of Washington State   (United States)

^e PXE International   (United States)

^f Premera Blue Cross MS 432 ^*  (United States)

^g Premera Blue Cross   (United States)

^h UNIVERSITY OF WASHINGTON   (United States)

ⁱ UNIVERSITY OF MICHIGAN   (United States)

Author keywords

cancer genomics; comparative effectiveness research; evaluation; qualitative research; research prioritization; stakeholder engagement; stakeholders

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; COMPARATIVE EFFECTIVENESS; COST BENEFIT ANALYSIS; DECISION MAKING; EVALUATION RESEARCH; EVIDENCE BASED MEDICINE; HUMAN; INFORMATION DISSEMINATION; INTERVIEW; ONLINE SYSTEM; PRIORITY JOURNAL; QUALITATIVE RESEARCH; QUESTIONNAIRE; RESEARCH PRIORITY; TELECONFERENCE;

EID: 84886944353     PISSN: 20426305     EISSN: 20426313     Source Type: Journal    
DOI: 10.2217/cer.12.36     Document Type: Article

References (27)

1. Sox HC, Greenfeld S. Comparative effectiveness research: a report from the Institute of Medicine. Ann. Intern. Med. 151(3), 203-205 (2009).
2. Hoffman A, Montgomery R, Aubry W, Tunis SR. How best to engage patients, doctors, and other stakeholders in designing comparative effectiveness studies. Health Aff. 29(10), 1834-1841 (2010).
3. Walls J, Rowe G, Frewer L. Stakeholder engagement in food risk management. Pub. Understand. Sci. 20(2), 241-260 (2011).
4. Bogart LM, Uyeda K. Community-based participatory research: partnering with communities for effective and sustainable behavioral health interventions. Health Psychol. 28(4), 391-393 (2009).
5. Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy 61(2), 213-236 (2002). (Pubitemid 34669916)
6. Shalowitz MU, Isacco A, Barquin N et al. Community-based participatory research: a review of the literature with strategies for community engagement. J. Dev. Behav. Pediatr. 30(4), 350-361 (2009).
7. Telford R, Boote JD, Cooper CL. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expect. 7(3), 209-220 (2004). (Pubitemid 39166370)
8. 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. Pharmacol. Ther. 90(6), 888-892 (2011).
9. Abelson J, Forest PG, Eyles J, Smith P, Martin E, Gauvin F-P. Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. Soc. Sci. Med. 57(2), 239-251 (2003). (Pubitemid 36582667)
10. Burgess J, Chilvers J. Upping the ante: a conceptual framework for designing and evaluating participatory technology assessments. Sci. Public Policy 33(10), 713-728 (2006). (Pubitemid 46401657)
11. Rowe G, Marsh R, Frewer LJ. Evaluation of a deliberative conference. Sci. Technol. Human Values 29(1), 88-121 (2004). (Pubitemid 38023900)
12. Sibbald S, Gibson J, Singer P, Upshur R, Martin D. Evaluating priority setting success in healthcare: a pilot study. BMC Health Serv. Res. 10(1), 131 (2010).
13. Beierle TC, Konisky DM. Values, confict, and trust in participatory environmental planning. J. Policy Anal. Manage. 19(4), 587-602 (2000).
14. Ramsey SD, Veenstra D, Tunis SR, Garrison L, Crowley JJ, Baker LH. How comparative effectiveness research can help advance 'personalized medicine' in cancer treatment. Health Aff. 30(12), 2259-2268 (2011).
15. Tharani R, Wong W, Carlson J et al. Prioritization in comparative effectiveness research: the CANCERGEN experience in cancer genomics. Med. Care (2012) (In Press).
16. Creswell JW Research Design: Qualitative, Quantitative, and Mixed Methods Approaches: 3rd Edition. SAGE Publications, Inc., CA, USA (2009).
17. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual. Health Res. 15(9), 1277-1288 (2005). (Pubitemid 41645161)
18. Giacomini MK, Cook DJ; for the Evidence-Based Medicine Working Group. Users' guides to the medical literature. JAMA 284(3), 357-362 (2000).
19. Patton MQ. Qualitative Research and Evaluation Methods: 3rd Edition. Sage Publications, Inc., CA, USA (2002).
20. Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. 'It all depends': conceptualizing public involvement in the context of health technology assessment agencies. Soc. Sci. Med. 70(10), 1518-1526 (2010).
21. Chalkidou K, Tunis S, Lopert R et al. Comparative effectiveness research and evidence-based health policy: experience from four countries. Milbank Q. 87(2), 339-367 (2009).
22. Renn O. A Model for an analytic-deliberative process in risk management. Environ. Sci. Technol. 33(18), 3049-3055 (1999). (Pubitemid 29441582)
23. Barber R, Boote JD, Parry GD, Cooper CL, Yeeles P, Cook S. Can the impact of public involvement on research be evaluated? A mixed methods study. Health Expect. doi:10.1111/j.1369-7625.00660.x (2011) (Epub ahead of print).
24. Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S, Bayliss H. The PIRICOM Study: a Systematic Review of the Conceptualisation, Measurement, Impact and Outcomes of Patients and Public Involvement in Health and Social Care Research. Clinical Research Collaboration, London, UK (2010).
25. Rowe G, Frewer LJ. Public participation methods: a framework for evaluation. Sci. Technol. Human Values 25(1), 3-29 (2000).
26. Webler T 'Right' discourse in citizen participation: an evaluative yardstick. In: Fairness and Competence in Citizen Participation: Evaluating Models for Environmental Discourse. Renn O, Webler T, Wiedemann PM (Eds). Kl uwer Academic Publishers, MA, USA (1995).
27. Deverka PA, Lavallee DM, Desai PJ et al. Stakeholder participation in comparative effectiveness research: defning a framework for effective engagement. J. Compar. Effect. Res. 1(2), 181-194 (2012).