Citizen and Patient Involvement library (CPIL)

This Vortal bibliography specialised collection is a product of the HTAi Interest Sub-Group on Patient and Citizen Involvement in HTA (PCISG).

Citizen deliberations

Abelson J, Bombard Y, Gauvin F-, Simeonov D, Boesveld S. Assessing the impacts of citizen deliberations on the health technology process. Int J Technol Assess Health Care. 2013;29(3):282-9. Abstract
Bombard Y, Abelson J, Simeonov D, Gauvin F-. Citizens' perspectives on personalized medicine: a qualitative public deliberation study. Eur J Hum Genet. 2013;21(11):1197-201. Abstract
Bombard Y, Abelson J, Simeonov D, Gauvin F-. Eliciting ethical and social values in health technology assessment: A participatory approach. Soc Sci Med. 2011;73(1):135-44. Abstract
Lehoux P, Daudelin G, Demers-Payette O, Boivin A. Fostering deliberations about health innovation: what do we want to know from publics? Soc Sci Med. 2009;68(11):2002-9. Abstract
Lehoux P, Daudelin G, Abelson J. The unbearable lightness of citizens within public deliberation processes. Soc Sci Med. 2012;74(12):1843-50. Abstract
Molster C, Maxwell S, Youngs L, Kyne G, Hope F, Dawkins H, et al. Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice? Health Expect. 2013;16(2):211-24. Abstract
Molster C, Potts A, McNamara B, Youngs L, Maxwell S, Dawkins H, et al. Informing public health policy through deliberative public engagement: perceived impact on participants and citizen-government relations. Genet Test Mol Biomarkers. 2013;17(9):713-8. Abstract
Street J, Duszynski K, Krawczyk S, Braunack-Mayer A. The use of citizens' juries in health policy decision-making: a systematic review. Soc Sci Med. 2014;109:1-9. Abstract

Citizen deliberations, Patient and public involvement

Abelson J, Giacomini M, Lehoux P, Gauvin F-. Bringing 'the public' into health technology assessment and coverage policy decisions: from principles to practice. Health Policy. 2007;82(1):37-50. Abstract

Dissemination

Ahern E, Thavaneswaran P, Babidge W, Maddern GJ. Consumer perspectives in surgical research and audit. Int J Technol Assess Health Care. 2011;27(4):337-42. Abstract
Bastian H, Scheibler Fü, Knelangen M, Zschorlich B, Nasser M, Waltering A. Choosing health technology assessment and systematic review topics: the development of priority-setting criteria for patients' and consumers' interests. Int J Technol Assess Health Care. 2011;27(4):348-56. Abstract
Fattal J, Lehoux P. Health technology assessment use and dissemination by patient and consumer groups: why and how? Int J Technol Assess Health Care. 2008;24(4):473-80. Abstract
Hivon M, Lehoux P, Rock M, Denis J-. Health technology assessment and the media: more compatible than one may think? Healthc Policy. 2012;7(4):56-67, 67.e1-7. Abstract
Izquierdo F, Gracia J, Guerra M, Blasco JA, Andradas E. Health technology assessment-based development of a Spanish breast cancer patient decision aid. Int J Technol Assess Health Care. 2011;27(4):363-8. Abstract
Lehoux P, Denis J-, Tailliez S, Hivon M. Dissemination of health technology assessments: identifying the visions guiding an evolving policy innovation in Canada. J Health Polit Policy Law. 2005;30(4):603-41. Abstract
Moorhead AS, Hazlett DE, Harrison L, Carroll JK, Irwin A, Hoving C. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res. 2013;15(4):e85. Abstract

Patient reported outcomes

Ahmed S, Berzon RA, Revicki DA, Lenderking WR, Moinpour CM, Basch E, et al. The use of patient-reported outcomes (PRO) within comparative effectiveness research: implications for clinical practice and health care policy. Med Care. 2012;50(12):1060-70. Abstract
Banerjee AK, Okun S, Edwards RI, Wicks P, Smith MY, Mayall SJ, et al. Patient-Reported Outcome Measures in Safety Event Reporting: PROSPER Consortium guidance. Drug Saf. 2013;36(12):1129-49. Abstract
Basch E, Torda P, Adams K. Standards for patient-reported outcome-based performance measures. JAMA. 2013;310(2):139-40.
Basch E, Abernethy AP, Mullins DC, Reeve BB, Smith ML, Coons SJ, et al. Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol. 2012;30(34):4249-55. Abstract
Basch E. Beyond the FDA PRO guidance: steps toward integrating meaningful patient-reported outcomes into regulatory trials and US drug labels. Value Health. 2012;15(3):401-3.
Basch E. The rationale for collecting patient-reported symptoms during routine chemotherapy. Am Soc Clin Oncol Educ Book. 2014:161-5. Abstract
Basch E. Toward patient-centered drug development in oncology. N Engl J Med. 2013;369(5):397-400.
Basch E, Bennett AV. Patient-reported outcomes in clinical trials of rare diseases. J Gen Intern Med. 2014;29 Suppl 3:S801-3. Abstract
Basch E, Snyder C, McNiff K, Brown R, Maddux S, Smith ML, et al. Patient-reported outcome performance measures in oncology. J Oncol Pract. 2014;10(3):209-11.
Basch E, Abernethy AP, Reeve BB. Assuring the patient centeredness of patient-reported outcomes: content validity in medical product development and comparative effectiveness research. Value Health. 2011;14(8):965-6.
Brettschneider C, Lühmann D, Raspe H. Informative value of Patient Reported Outcomes (PRO) in Health Technology Assessment (HTA). GMS Health Technol Assess. 2011;7:Doc01. Abstract
Frank L, Basch E, Selby JV. The PCORI Perspective on Patient-Centered Outcomes Research. JAMA. 2014.
Jensen RE, Snyder CF, Abernethy AP, Basch E, Potosky AL, Roberts AC, et al. Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract. 2014;10(4):e215-22. Abstract
Reeve BB, Mitchell SA, Dueck AC, Basch E, Cella D, Reilly CM, et al. Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials. J Natl Cancer Inst. 2014;106(7). Abstract

Risk-benefits

Basch E. New frontiers in patient-reported outcomes: adverse event reporting, comparative effectiveness, and quality assessment. Annu Rev Med. 2014;65:307-17. Abstract
Basch E, Bennett A, Pietanza CM. Use of patient-reported outcomes to improve the predictive accuracy of clinician-reported adverse events. J Natl Cancer Inst. 2011;103(24):1808-10.
Basch E. Systematic collection of patient-reported adverse drug reactions: a path to patient-centred pharmacovigilance. Drug Saf. 2013;36(4):277-8.
Brett Hauber A, Fairchild AO, Reed Johnson F. Quantifying benefit-risk preferences for medical interventions: an overview of a growing empirical literature. Appl Health Econ Health Policy. 2013;11(4):319-29. Abstract
Judson TJ, Bennett AV, Rogak LJ, Sit L, Barz A, Kris MG, et al. Feasibility of long-term patient self-reporting of toxicities from home via the Internet during routine chemotherapy. J Clin Oncol. 2013;31(20):2580-5. Abstract
Pietanza CM, Basch EM, Lash A, Schwartz LH, Ginsberg MS, Zhao B, et al. Harnessing technology to improve clinical trials: study of real-time informatics to collect data, toxicities, image response assessments, and patient-reported outcomes in a phase II clinical trial. J Clin Oncol. 2013;31(16):2004-9. Abstract

Quality of life

Böckerman P, Johansson E, Saarni SI. Do established health-related quality-of-life measures adequately capture the impact of chronic conditions on subjective well-being? Health Policy. 2011;100(1):91-5. Abstract
Clemens S, Begum N, Harper C, Whitty JA, Scuffham PA. A comparison of EQ-5D-3L population norms in Queensland, Australia, estimated using utility value sets from Australia, the UK and USA. Qual Life Res. 2014. Abstract
Engel L, Bryan S, Evers SM, Dirksen CD, Noonan VK, Whitehurst DG. Exploring psychometric properties of the SF-6D, a preference-based health-related quality of life measure, in the context of spinal cord injury. Qual Life Res. 2014;23(8):2383-93. Abstract
Gutman SI, Piper M, Grant MD, Basch E, Oliansky DM, Aronson N. Progression-Free Survival: What Does It Mean for Psychological Well-Being or Quality of Life?. Rockville (MD): Agency for Healthcare Research and Quality (US); 2013. Abstract

Patient preference

Boivin A, Green J, van der Meulen J, Légaré F, Nolte E. Why consider patients' preferences? A discourse analysis of clinical practice guideline developers. Med Care. 2009;47(8):908-15. Abstract
Danner M, Hummel MJ, Volz F, van Manen JG, Wiegard B, Dintsios C-, et al. Integrating patients' views into health technology assessment: Analytic hierarchy process (AHP) as a method to elicit patient preferences. Int J Technol Assess Health Care. 2011;27(4):369-75. Abstract
Dirksen CD, Utens CM, Joore MA, van Barneveld TA, Boer B, Dreesens DH, et al. Integrating evidence on patient preferences in healthcare policy decisions: protocol of the patient-VIP study. Implement Sci. 2013;8:64. Abstract
Whitty JA, Ratcliffe J, Chen G, Scuffham PA. Australian Public Preferences for the Funding of New Health Technologies: A Comparison of Discrete Choice and Profile Case Best-Worst Scaling Methods. Med Decis Making. 2014;34(5):638-54. Abstract

Patient and public involvement

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. Abstract
Cavazza M, Jommi C. Stakeholders involvement by HTA Organisations: why is so different? Health Policy. 2012;105(2-3):236-45. Abstract
Chafe R, Neville D, Rathwell T, Deber R. Deciding whether to engage the public on health care issues. Healthc Manage Forum. 2008;21(3):24-8. Abstract
Davies SR. The rules of engagement: Power and interaction in dialogue events. Public Underst Sci. 2013;22(1):65-79. Abstract
Devonshire IM, Hathway GJ. Overcoming the barriers to greater public engagement. PLoS Biol. 2014;12(1):e1001761.
Facey K, Boivin A, Gracia J, Hansen HP, Lo Scalzo A, Mossman 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. Abstract
Facey KM, Hansen HP. Patient-focused HTAs. Int J Technol Assess Health Care. 2011;27(4):273-4.
Fernandez AM, Schrogie JJ, Wilson WW, Nash DB. Technology assessment in healthcare: a review and description of a "best practice" technology assessment process. Best Pract Benchmarking Healthc. 1997;2(6):240-53. Abstract
Gagnon M-, Gagnon J, St-Pierre M, Gauvin F-, Piron F, Rhainds M, et al. Involving patients in HTA activities at local level: a study protocol based on the collaboration between researchers and knowledge users. BMC Health Serv Res. 2012;12:14. Abstract
Gagnon M-, Desmartis M, Lepage-Savary D, Gagnon J, St-Pierre M, Rhainds M, et al. Introducing patients' and the public's perspectives to health technology assessment: A systematic review of international experiences. Int J Technol Assess Health Care. 2011;27(1):31-42. Abstract
Gagnon M-, Lepage-Savary D, Gagnon J, St-Pierre M, Simard C, Rhainds M, et al. Introducing patient perspective in health technology assessment at the local level. BMC Health Serv Res. 2009;9:54. Abstract
Gauvin F-, Abelson J, Giacomini M, Eyles J, Lavis JN. Moving cautiously: Public involvement and the health technology assessment community. Int J Technol Assess Health Care. 2011;27(1):43-9. Abstract
Gauvin F-, 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. 2010;70(10):1518-26. Abstract
Hailey D, Nordwall M. Survey on the involvement of consumers in health technology assessment programs. Int J Technol Assess Health Care. 2006;22(4):497-9. Abstract
Hailey D, Werkö S, Bakri R, Cameron A, Göhlen B, Myles S, et al. Involvement of consumers in health technology assessment activities by Inahta agencies. Int J Technol Assess Health Care. 2013;29(1):79-83. Abstract
Kenyon L, Gordon F. Community engagement: from a professional to a public perspective. Community Pract. 2009;82(2):22-5. Abstract
Kreis J, Schmidt H. Public engagement in health technology assessment and coverage decisions: a study of experiences in France, Germany, and the United Kingdom. J Health Polit Policy Law. 2013;38(1):89-122. Abstract
Menon D, Stafinski T. Role of patient and public participation in health technology assessment and coverage decisions. Expert Rev Pharmacoecon Outcomes Res. 2011;11(1):75-89. Abstract
Roberts M. Making drug policy together: reflections on evidence, engagement and participation. Int J Drug Policy. 2014;25(5):952-6. Abstract
Sturgis P. On the limits of public engagement for the governance of emerging technologies. Public Underst Sci. 2014;23(1):38-42.
Whitty JA. An international survey of the public engagement practices of health technology assessment organizations. Value Health. 2013;16(1):155-63. Abstract

Moral and ethical issues

Burls A, Caron L, Cleret de Langavant G, Dondorp W, Harstall C, Pathak-Sen E, et al. Tackling ethical issues in health technology assessment: a proposed framework. Int J Technol Assess Health Care. 2011;27(3):230-7. Abstract
Culyer AJ, Bombard Y. An equity framework for health technology assessments. Med Decis Making. 2012;32(3):428-41. Abstract
DeJean D, Giacomini M, Schwartz L, Miller FA. Ethics in Canadian health technology assessment: a descriptive review. Int J Technol Assess Health Care. 2009;25(4):463-9. Abstract
Drummond M, Tarricone R, Torbica A. Assessing the added value of health technologies: reconciling different perspectives. Value Health. 2013;16(1 Suppl):S7-13. Abstract
Hofmann B. Toward a procedure for integrating moral issues in health technology assessment. Int J Technol Assess Health Care. 2005;21(3):312-8. Abstract
Lehoux P, Gauthier P, Williams-Jones B, Miller FA, Fishman JR, Hivon M, et al. Examining the ethical and social issues of health technology design through the public appraisal of prospective scenarios: a study protocol describing a multimedia-based deliberative method. Implement Sci. 2014;9:81. Abstract
Lehoux P, Williams-Jones B. Mapping the integration of social and ethical issues in health technology assessment. Int J Technol Assess Health Care. 2007;23(1):9-16. Abstract
Saarni SI, Braunack-Mayer A, Hofmann B, van der Wilt GJ. Different methods for ethical analysis in health technology assessment: an empirical study. Int J Technol Assess Health Care. 2011;27(4):305-12. Abstract

Societial values

Daudelin G, Lehoux P, Abelson J, Denis JL. The integration of citizens into a science/policy network in genetics: governance arrangements and asymmetry in expertise. Health Expect. 2011;14(3):261-71. Abstract
Goven J. Assessing genetic testing: who are the "lay experts"? Health Policy. 2008;85(1):1-18. Abstract
Lehoux P, Daudelin G, Hivon M, Miller FA, Denis J-. How do values shape technology design? An exploration of what makes the pursuit of health and wealth legitimate in academic spin-offs. Sociol Health Illn. 2014;36(5):738-55. Abstract
Lehoux P, Blume S. Technology assessment and the sociopolitics of health technologies. J Health Polit Policy Law. 2000;25(6):1083-120. Abstract

Qualitative research

Dixon-Woods M, Agarwal S, Jones D, Young B, Sutton A. Synthesising qualitative and quantitative evidence: a review of possible methods. J Health Serv Res Policy. 2005;10(1):45-53. Abstract
Hansen HP, Draborg E, Børlum Kristensen F. Exploring qualitative research synthesis: the role of patients' perspectives in health policy design and decision making. Patient. 2011;4(3):143-52. Abstract
Mays N, Pope C, Popay J. Systematically reviewing qualitative and quantitative evidence to inform management and policy-making in the health field. J Health Serv Res Policy. 2005;10 Suppl 1:6-20. Abstract
Murphy E, Dingwall R, Greatbatch D, Parker S, Watson P. Qualitative research methods in health technology assessment: a review of the literature. Health Technol Assess. 1998;2(16):iii-ix, 1-274.
Ziebland S, Hunt K. Using secondary analysis of qualitative data of patient experiences of health care to inform health services research and policy. J Health Serv Res Policy. 2014;19(3):177-82. Abstract

Guides

Direction collaboration et partenariat patient. Montréal: Université de Montréal; 2014. Abstract
iap2 public participation spectrum. Louisville (CO, USA): International Association for Public Participation (IAP2); 2013. Abstract
Patient Involvement in Clinical Research: A guide for Patient Organisations and Patient Representatives. Soest (NL): PatientPartner; 2011. Abstract

Hospital HTA

Gagnon M-, Desmartis M, Gagnon J, St-Pierre M, Gauvin F-, Rhainds M, et al. Introducing the patient's perspective in hospital health technology assessment (HTA): the views of HTA producers, hospital managers and patients. Health Expect. 2012. Abstract

Who can represent patients

Grainger D. Can a health professional represent patient views: industry response. Int J Technol Assess Health Care. 2011;27(4):402.
Hofmann B, Saarni SI. Who can and who should represent the patient? Int J Technol Assess Health Care. 2011;27(4):403.
Jovell AJ. Response: I know how you think, so I can help. Int J Technol Assess Health Care. 2011;27(4):402-3.
Packer C. Can a health professional represent patient views? Int J Technol Assess Health Care. 2011;27(4):400-1.
Paterson K. Can a health professional represent patient views: HTA response. Int J Technol Assess Health Care. 2011;27(4):401.
Wong-Rieger D. Can a health professional represent patient view: patient organization response. Int J Technol Assess Health Care. 2011;27(4):401-2.

Methods and reporting

Hansen HP, Lee A, van Randwijk CB. Patient aspects: a review of fifty-eight Danish HTA reports. Int J Technol Assess Health Care. 2011;27(4):330-6. Abstract
Hubbard G, Kidd L, Donaghy E, McDonald C, Kearney N. A review of literature about involving people affected by cancer in research, policy and planning and practice. Patient Educ Couns. 2007;65(1):21-33. Abstract
Messina J, Grainger DL. A pilot study to identify areas for further improvements in patient and public involvement in health technology assessments for medicines. Patient. 2012;5(3):199-211. Abstract
Moran R, Davidson P. An uneven spread: a review of public involvement in the National Institute of Health Research's Health Technology Assessment program. Int J Technol Assess Health Care. 2011;27(4):343-7. Abstract
Staniszewska S, Brett J, Mockford C, Barber R. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care. 2011;27(4):391-9. Abstract

Disinvestment

Hodgetts K, Hiller JE, Street JM, Carter D, Braunack-Mayer AJ, Watt AM, et al. Disinvestment policy and the public funding of assisted reproductive technologies: outcomes of deliberative engagements with three key stakeholder groups. BMC Health Serv Res. 2014;14:204. Abstract

Production of patient evidence

Lehoux P. Patients' perspectives on high-tech home care: a qualitative inquiry into the user-friendliness of four technologies. BMC Health Serv Res. 2004;4(1):28. Abstract
Lehoux P, Poland B, Daudelin G. Focus group research and "the patient's view". Soc Sci Med. 2006;63(8):2091-104. Abstract
Oleen-Burkey M, Castelli-Haley J, Lage MJ, Johnson KP. Burden of a multiple sclerosis relapse: the patient's perspective. Patient. 2012;5(1):57-69. Abstract
Street JM, Hennessy SE, Watt AM, Hiller JE, Elshaug AG. News and social media: windows into community perspectives on disinvestment. Int J Technol Assess Health Care. 2011;27(4):376-83. Abstract
Tjørnhøj-Thomsen T, Hansen HP. Knowledge in health technology assessment: who, what, how? Int J Technol Assess Health Care. 2011;27(4):324-9. Abstract

Prioritisation

Meetoo D. The setting of healthcare priorities through public engagement. Br J Nurs. 2013;22(7):372-6. Abstract
Mitton C, Smith N, Peacock S, Evoy B, Abelson J. Public participation in health care priority setting: A scoping review. Health Policy. 2009;91(3):219-28. Abstract
Wodak J. Public engagement in choosing health priorities. CMAJ. 2011;183(2):227.

Patient and public involvement, Societial values

Ong BN. The lay perspective in health technology assessment. Int J Technol Assess Health Care. 1996;12(3):511-7. Abstract

Citizen deliberations, Production of patient evidence

Scuffham PA, Ratcliffe J, Kendall E, Burton P, Wilson A, Chalkidou K, et al. Engaging the public in healthcare decision-making: quantifying preferences for healthcare through citizens' juries. BMJ Open. 2014;4(5):e005437. Abstract
Whitty JA, Burton P, Kendall E, Ratcliffe J, Wilson A, Littlejohns P, et al. Harnessing the potential to quantify public preferences for healthcare priorities through citizens' juries. Int J Health Policy Manag. 2014;3(2):57-62. Abstract