The use of research evidence on patient preferences in health care decision-making: issues, controversies and moving forward

References

• National Institute for Health and Clinical Excellence (NICE). Contributing to a technology appraisal - a guide for patient/carer groups. National Institute for Health and Clinical Excellence; London, UK: 2004
   Google Scholar
• Abelson J, Giancomini M, Lehoux P, Gauvin FP. Bringing ‘the public’ into health technology assessment and coverage policy decisions: from principles to practice. Health Policy 2007;82:37-50
   PubMed Web of Science ®Google Scholar
• Bridges JF, Jones C. Patient-based health technology assessment: a vision of the future. Int J Technol Assess Health Care 2007;23(1):30-5
   PubMed Web of Science ®Google Scholar
• Boivin A, Currie K, Fervers B, et al. Patient and public involvement in clinical guidelines: international experiences and future perspectives. Qual Saf Health Care 2010;19:e22
   PubMedGoogle Scholar
• Nilsen ES, Myrhaug HT, Johansen M, et al. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Library 2010;1
   Google Scholar
• Arnstein SR. A ladder of citizen participation. J Am Planning Association 1969;35(4):216-24
   Web of Science ®Google Scholar
• Rowe G, Frewer LJ. A typology of public engagement mechanisms. Sci Technol Human Values 2005;30(2):251
   Web of Science ®Google Scholar
• Institute of Medicine. Finding what works in health care: standards for systematic reviews. The National Academies Press; Washington DC, USA: 2011
   Google Scholar
• Sackett DL, Straus SE, Richardson WS, et al. Evidence-based Medicine. How to Practice and teach EBM. 2nd edition. Churchill Livingstone; Edinburgh, UK: 2000
   Google Scholar
• Bingefors K, Pashos CL, Smith MD, Berger ML. Health care cost, quality, and outcomes: ISPOR book of terms. International Society for Pharmacoeconomics & Outcomes Research; Lawrenceville, NJ, USA: 2003
   Google Scholar
• Murphy JF. Paternalism or partnership: clinical practice guidelines and patient preference. Ir Med J 2008;101(8):232
   PubMedGoogle Scholar
• Chong CA, Chen IJ, Naglie G, Krahn MD. How well do guidelines incorporate evidence on patient preferences? J Gen Intern Med 2009;24(8):977-82
   PubMed Web of Science ®Google Scholar
• Van de Bovenkamp HM, Zuiderent-Jerak T. An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence-based epistemic settings. Health Expect 2013. [Epub ahead of print]
   Web of Science ®Google Scholar
• Boivin A, Green J, Van der Meulen J, et al. Why consider patients’ preferences? A discourse analysis of clinical practice guideline developers. Med Care 2009;47(8):908-15
   PubMed Web of Science ®Google Scholar
• Lee A, Skött LS, Hansen HP. Organizational and patient-related assessments in HTAs: state of the art. Int J Technol Assess Health Care 2009;25(4):530-6
   PubMed Web of Science ®Google Scholar
• Golan O, Hansen P, Kaplan G. Tal) . Health technology prioritization: which criteria for prioritizing new technologies and what are their relative weights? Health Policy 2011;102:126-35
   PubMed Web of Science ®Google Scholar
• Tanios N, Wagner M, Tony M, Baltussen R. Which criteria are considered in healthcare decisions? Insights from an international survey of policy and clinical decision makers. Int J Technol Assess Health Care 2013;29(4):456-65
   PubMed Web of Science ®Google Scholar
• Baltussen R, Niessen L. Priority setting of health interventions: the need for multi-criteria decision analysis. Cost Eff Resour Alloc 2006;4:14
   PubMedGoogle Scholar
• Marsh K, Lanitis T, Neasham D, et al. Assessing the value of health care interventions using multi-criteria decision analysis: a review of the literature. Pharmacoeconomics 2014;32(4):345-65
   PubMed Web of Science ®Google Scholar
• Krahn M, Naglie G. The next step in guideline development: incorporating patient preferences. JAMA 2008;300(4):436-8
   PubMed Web of Science ®Google Scholar
• Umscheid CA. Should guidelines incorporate evidence on patient preferences? J Gen Intern Med 2009;24(8):988-90
   PubMed Web of Science ®Google Scholar
• Guyatt GH, Oxman AD, Kunz R, et al. GRADE: going from evidence to recommendations. BMJ 2008;336(7652):1049-51
   PubMed Web of Science ®Google Scholar
• Weinstein MC, Torrance G, McGuire A. QALY: The Basics. Value Health 2009;12(Suppl 1):S5-9
   PubMed Web of Science ®Google Scholar
• Gold MRS JA, Siegel JE, Russel LB, Weinstein MC. Cost-effectiveness in Health and Medicine. Oxford University Press; Oxford, UK: 1996
   Google Scholar
• Rawls J. A theory of Justice. Harvard University Press; Cambridge, MA, USA: 1971
   Google Scholar
• Dolders MG, Zeegers MP, Groot W, Ament A. A meta-analysis demonstrates no significant differences between patient and population preferences. J Clin Epidemiol 2006;59:653-64
   PubMed Web of Science ®Google Scholar
• Ubel PA, Loewenstein G, Jepson C. Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Qual Life Res 2003;12:599-607
   PubMed Web of Science ®Google Scholar
• Cohen GA. Equality of what? On welfare, goods and capabilities. In: Nussbaum MC, Sen AK, editors. The quality of life. Clarendon Press; Oxford, UK: 1993
   Google Scholar
• Brooker AS, Carcone S, Witteman W, Krahn M. Quantitative patient preference evidence for health technology assessment: a case study. Int J Technol Assess Health Care 2013;29(3):290-300
   PubMed Web of Science ®Google Scholar
• Drummond M, Sculpher M, O’Brien B, et al. Methods for the economic evaluation of health care programmes. 3rd edition. Oxford University Press; New York, USA: 2005
   Google Scholar
• Ajzen I. Attitudes, personality and behaviour. 2nd Edition. Open University Press; Berkshire, UK: 2005
   Google Scholar
• Scherer K. What are emotions? And how can they be measured? Soc Sci Inf 2005;44(4):695-729
   Web of Science ®Google Scholar
• King M, Nazareth I, Lampe F, et al. Conceptual framework and systematic review of the effect of participants’ and professionals’ preferences in randomized trials. Health Technol Assess 2005;9:35
   Web of Science ®Google Scholar
• Montori VM, Brito JP, Murad MH. The optimal practice of Evidence-Based Medicine. Incorporating patient preferences in practice guidelines. JAMA 2013;310(23):2503-4
   PubMed Web of Science ®Google Scholar
• Doward LC, McKenna SP. Defining patient-reported outcomes. Value Health 2004;7(Suppl 1):S4-8
   PubMedGoogle Scholar
• McKenna SP. Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science. BMC Med 2011;9:86
   PubMed Web of Science ®Google Scholar
• Ryan M, Scott DA, Reeves C, et al. Eliciting public preferences for healthcare: a systematic review of techniques. Health Technol Assess 2001;5(5):1-186
   PubMedGoogle Scholar
• Epstein RM, Peters E. Beyond information. Exploring patients’ preferences. JAMA 2009;302(2):195-7
   PubMed Web of Science ®Google Scholar
• Bryan S, Dolan P. Discrete choice experiments in health economics. For better or for worse? Eur J Health Econom 2004;5:199-202
   PubMedGoogle Scholar
• Woolf S, Schünemann HJ, Eccles MP, et al. Developing clinical practice guidelines: types of evidence and outcomes; values and economics, synthesis, grading, and presentation and deriving recommendations. Implement Sci 2012;7:61
   PubMed Web of Science ®Google Scholar
• Murad MH, Montori VM, Guyatt GH. Incorporating patient preferences in evidence-based medicine. JAMA 2008;300(21):2483
   PubMed Web of Science ®Google Scholar
• MacLean S, Mulla S, Akl EA, et al. Patient values and preferences in decision-making for antithrombotic therapy: a systematic review: antithrombotic therapy and prevention of thrombosis, 9th ed: American College of Chest Physicians Evidence-Based Clinical practice guidelines. Chest 2012;141(Suppl 2):e1S-23S
   PubMed Web of Science ®Google Scholar
• Facey K, Boivin A, Gracia J, et al. Patients’ perspectives in health technology assessment: a route to robust evidence and fair deliberation. Int J Technol Assess Health Care 2010;26(3):334-40
   PubMed Web of Science ®Google Scholar
• Brewin C, Bradley C. Patient preferences and randomised clinical trials. BMJ 1989;299:313-15
   PubMed Web of Science ®Google Scholar
• Brazier JE, Dixon S, Ratcliffe J. The role of patient preferences in cost-effectiveness analysis: a conflict of values? Pharmacoeconomics 2009;27(9):705-12
   PubMed Web of Science ®Google Scholar
• Preference Collaborative Review group. Patients’ preferences within randomised trials: systematic review and patient level meta-analysis. BMJ 2008;337:a1864
   PubMed Web of Science ®Google Scholar
• Cabana MD, Rand CS, Powe NR, et al. Why Don’t Physians Follow Clinical Practice Guidelines? A framework for improvement. JAMA 1999;282(15):1458-65
   PubMed Web of Science ®Google Scholar
• Drummond M, Sorenson C. Nasty or Nice? A perspective on the use of health technology assessment in the United Kingdom. Value Health 2009;12(Suppl 2):S8-S13
   Google Scholar
• Van de Bovenkamp HM, Trappenburg MJ. Reconsidering Patient Participation in Guideline Development. Health Care Anal 2009;17:198-216
   PubMed Web of Science ®Google Scholar
• Mockford C, Staniszewska S, Griffith F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care 2012;24(1):28-38
   PubMed Web of Science ®Google Scholar
• Barrat A. Evidence Based Medicine and Shared Decision Making: the challenge of getting both evidence and preferences into health care. Patient Educ Couns 2008;73:407-12
   PubMed Web of Science ®Google Scholar
• Dolan P. Whose preferences count? Med Decis Making 1999;19(4):482-6
   PubMed Web of Science ®Google Scholar
• Brazier J, Akehurst R, Brennan A, et al. Should patients have a greater role in valuing health states? Appl Health Econ Health Policy 2005;4(4):201-8
   PubMedGoogle Scholar
• Insinga RP, Fryback DG. Understanding differences between self-ratings and population ratings for health in the EuroQol. Qual Life Res 2003;12:611-19
   PubMed Web of Science ®Google Scholar
• Gandjour A. Theoretical foundation of patient v. population preferences in calculating QALYs. Med Decis Making 2010;30:E57-63
   Web of Science ®Google Scholar
• Drummond M, Brixner D, Gold M, et al. Toward a consensus on the QALY. Value Health 2009;12(Suppl 1):S31-5
   Google Scholar
• Kahneman D, Sugden R. Experienced utility as a standard of policy evaluation. Environ Resour Econ 2005;32:161-81
   Web of Science ®Google Scholar
• Dolan P, Lee H, King D, Metcalfe R. Valuing health directly. BMJ 2009;339:b2577
   Web of Science ®Google Scholar
• Brouwer WB, Culyer AJ, Van Exel NJ, Rutten FF. Welfarism vs. extra-welfarism. J Health Econ 2008;27:325-38
   PubMed Web of Science ®Google Scholar
• Sen AK. Capabilities and well-being. In: Nussbaum MC, Sen AK, editors. The Quality of life. Clarendon Press; Oxford, UK: 1993
   Google Scholar
• Coast J, Smith RD, Lorgelly P. Welfarism, extra-welfarism and capability: the spread of ideas in health economics. Soc Sci Med 2008;67:1190-8
   PubMed Web of Science ®Google Scholar
• Ryan M, Shackley P. Assessing the benefits of health care: how far should we go? Qual Health Care 1995;4:207-13
   PubMedGoogle Scholar
• Mooney G. Beyond health outcomes: the benefits of health care. Health Care Anal 1998;6:99-105
   PubMed Web of Science ®Google Scholar
• Bridges JF. Future challenges for the economic evaluation of healthcare: patient preferences, risk attitudes and beyond. Pharmacoeconomics 2005;23(4):317-21
   PubMed Web of Science ®Google Scholar
• Goldman D, Lakdawalla D, Philipson TJ, Yin W. Valuing health technologies at NICE: recommendations for improved incorporation of treatment value in HTA. Health Econ 2010;19:1109-16
   PubMed Web of Science ®Google Scholar
• Entwistle V, Firnigl D, Ryan M, et al. Which experiences of health care delivery matter to service users and why? A critical interpretive synthesis and conceptual map. J Health Serv Res Policy 2012;17(2):70-8
   Google Scholar
• De Bekker-Grob EW, Ryan M, Gerard K. Discrete choice experiments in health economics: a review of the literature. Health Econ 2012;21:145-72
   PubMed Web of Science ®Google Scholar
• Donabedian A. The definition of quality and approaches to its assessment. Health Administration Press, Ann Arbor, USA;1980
   Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007;19(6):349-57
   PubMed Web of Science ®Google Scholar
• Bridges JF, Hauber AB, Marshall D, et al. Conjoint analysis applications in health–a checklist: a report of the ISPOR Good Research Practices for Conjoint Analysis Task Force. Value Health 2011;14:403-13
   PubMed Web of Science ®Google Scholar
• Britton A, McKee M, Black N, et al. Choosing between randomised and non-randomised studies: a systematic review. Health Technol Assess 1998;2:13
   Google Scholar
• Lambert MF, Wood J. Incorporating patient preferences into randomized trials. J Clin Epid 2000;53:163-6
   PubMed Web of Science ®Google Scholar
• Lomas J, Culyer T, McCutcheon C, et al. Conceptualizing and combining evidence for health system guidance: final report. Canadian Health Services Research Foundation; Ottawa, Canada: 2005
   Google Scholar
• Mays N, Pope C, Popay J. Systematic reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. J Health Ser Res Policy 2005;10(Suppl 1):6-20
   PubMedGoogle Scholar
• Greenhalgh T, Robert G, MacFarlane F, et al. Storylines of a research in diffusion of innovation: a meta-narrative approach to systematic review. Soc Sci Med 2005;61:417-30
   PubMed Web of Science ®Google Scholar
• Dy SM, Purnell TS. Key concepts relevant to the quality of complex and shared decision-making in health care: a literature review. Soc Sci Med 2012;74:582-7
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Clinical Excellence (NICE). Patient experience in adult NHS services: improving the experience of care for people using adult NHS services. NICE clinical guideline 2012
   Google Scholar
• Quill TE, Holloway RG. Evidence, Preferences, Recommendations – Finding the right balance in patient care. N Engl J Med 2012;366(18):1653-5
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Care Excellence (NICE). Guide to the methods of technology appraisal 2013. 2013
   Google Scholar
• Stolk EA, Oppe M, Scalone L, Krabbe PF. Discrete Choice Modeling for the Quantification of Health States: the case of the EQ-5D. Value Health 2010;13(8):1005-13
   PubMed Web of Science ®Google Scholar
• Institute for Quality and Efficiency in Health care (IQWiG). General methods for the assessment of the relation of benefits to costs. 2009
   Google Scholar
• Institute for Quality and Efficiency in Health care (IQWiG). Analytical Hierarchy Process (AHP) – pilot project to elicit patient preferences in the indication ‘depression’. 2013
   Google Scholar
• Sculpher M. The cost-effectiveness of preference-based treatment allocation: the case of hysterectomy versus endometrial resection in the treatment of menorrhagia. Health Econ 1998;7:129-42
   PubMed Web of Science ®Google Scholar
• Black N, Varaganum M, Hutchings A. Relationship between patient reported experience (PREMs) and patient reported outcomes (PROMs) in elective surgery. BMJ Qual Saf 2014;23(7):1-9
   PubMed Web of Science ®Google Scholar
• Al-Janabi H, Peters TJ, Brazier J, et al. An investigation of the construct validity of the ICECAP-A capability measure. Qual Life Res 2013;22(7):1831-40
   PubMed Web of Science ®Google Scholar
• Flynn T, Peters TJ, Al-Janabi H, et al. Scoring the ICECAP-A capability instrument. Estimation of a UK population tariff. Health Econ 2013. [Epub ahead of print]
   PubMed Web of Science ®Google Scholar
• Ryan M. Discrete choice experiments in health care. NICE should consider using them for patient centred evaluations of technologies. BMJ 2004;328:360-1
   PubMed Web of Science ®Google Scholar
• Dirksen CD, Utens CMA, Joore MA, et al. Integrating evidence on patient preferences in healthcare policy decisions. Protocol of the Patient-VIP Study. Implement Sci 2013;8:64
   PubMed Web of Science ®Google Scholar