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
Assessing the impacts of citizen deliberations on the health technology process. Int J Technol Assess Health Care. 2013;29(3):282-9. Abstract
Eliciting ethical and social values in health technology assessment: A participatory approach. Soc Sci Med. 2011;73(1):135-44. Abstract
Citizens' perspectives on personalized medicine: a qualitative public deliberation study. Eur J Hum Genet. 2013;21(11):1197-201. Abstract
The unbearable lightness of citizens within public deliberation processes. Soc Sci Med. 2012;74(12):1843-50. Abstract
Fostering deliberations about health innovation: what do we want to know from publics? Soc Sci Med. 2009;68(11):2002-9. Abstract
Blueprint for a deliberative public forum on biobanking policy: were theoretical principles achievable in practice? Health Expect. 2013;16(2):211-24. Abstract
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
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
Bringing 'the public' into health technology assessment and coverage policy decisions: from principles to practice. Health Policy. 2007;82(1):37-50. Abstract
Dissemination
Consumer perspectives in surgical research and audit. Int J Technol Assess Health Care. 2011;27(4):337-42. Abstract
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
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
Health technology assessment and the media: more compatible than one may think? Healthc Policy. 2012;7(4):56-67, 67.e1-7. Abstract
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
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
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
Patient-Reported Outcome Measures in Safety Event Reporting: PROSPER Consortium guidance. Drug Saf. 2013;36(12):1129-49. Abstract
Standards for patient-reported outcome-based performance measures. JAMA. 2013;310(2):139-40.
Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol. 2012;30(34):4249-55. Abstract
The rationale for collecting patient-reported symptoms during routine chemotherapy. Am Soc Clin Oncol Educ Book. 2014:161-5. Abstract
Toward patient-centered drug development in oncology. N Engl J Med. 2013;369(5):397-400.
Patient-reported outcomes in clinical trials of rare diseases. J Gen Intern Med. 2014;29 Suppl 3:S801-3. Abstract
Patient-reported outcome performance measures in oncology. J Oncol Pract. 2014;10(3):209-11.
Informative value of Patient Reported Outcomes (PRO) in Health Technology Assessment (HTA). GMS Health Technol Assess. 2011;7:Doc01. Abstract
Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract. 2014;10(4):e215-22. Abstract
Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials. J Natl Cancer Inst. 2014;106(7). Abstract
Risk-benefits
Use of patient-reported outcomes to improve the predictive accuracy of clinician-reported adverse events. J Natl Cancer Inst. 2011;103(24):1808-10.
Systematic collection of patient-reported adverse drug reactions: a path to patient-centred pharmacovigilance. Drug Saf. 2013;36(4):277-8.
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
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
Quality of life
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
Why consider patients' preferences? A discourse analysis of clinical practice guideline developers. Med Care. 2009;47(8):908-15. Abstract
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
Patient and public involvement
Patient-based health technology assessment: a vision of the future. Int J Technol Assess Health Care. 2007;23(1):30-5. Abstract
Stakeholders involvement by HTA Organisations: why is so different? Health Policy. 2012;105(2-3):236-45. Abstract
Deciding whether to engage the public on health care issues. Healthc Manage Forum. 2008;21(3):24-8. Abstract
The rules of engagement: Power and interaction in dialogue events. Public Underst Sci. 2013;22(1):65-79. Abstract
Overcoming the barriers to greater public engagement. PLoS Biol. 2014;12(1):e1001761.
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
Patient-focused HTAs. Int J Technol Assess Health Care. 2011;27(4):273-4.
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
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
Introducing patient perspective in health technology assessment at the local level. BMC Health Serv Res. 2009;9:54. Abstract
Moving cautiously: Public involvement and the health technology assessment community. Int J Technol Assess Health Care. 2011;27(1):43-9. Abstract
"It all depends": conceptualizing public involvement in the context of health technology assessment agencies. Soc Sci Med. 2010;70(10):1518-26. Abstract
Survey on the involvement of consumers in health technology assessment programs. Int J Technol Assess Health Care. 2006;22(4):497-9. Abstract
Involvement of consumers in health technology assessment activities by Inahta agencies. Int J Technol Assess Health Care. 2013;29(1):79-83. Abstract
Community engagement: from a professional to a public perspective. Community Pract. 2009;82(2):22-5. Abstract
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
Role of patient and public participation in health technology assessment and coverage decisions. Expert Rev Pharmacoecon Outcomes Res. 2011;11(1):75-89. Abstract
Making drug policy together: reflections on evidence, engagement and participation. Int J Drug Policy. 2014;25(5):952-6. Abstract
On the limits of public engagement for the governance of emerging technologies. Public Underst Sci. 2014;23(1):38-42.
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
Tackling ethical issues in health technology assessment: a proposed framework. Int J Technol Assess Health Care. 2011;27(3):230-7. Abstract
An equity framework for health technology assessments. Med Decis Making. 2012;32(3):428-41. Abstract
Ethics in Canadian health technology assessment: a descriptive review. Int J Technol Assess Health Care. 2009;25(4):463-9. Abstract
Assessing the added value of health technologies: reconciling different perspectives. Value Health. 2013;16(1 Suppl):S7-13. Abstract
Toward a procedure for integrating moral issues in health technology assessment. Int J Technol Assess Health Care. 2005;21(3):312-8. Abstract
Mapping the integration of social and ethical issues in health technology assessment. Int J Technol Assess Health Care. 2007;23(1):9-16. Abstract
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
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
Assessing genetic testing: who are the "lay experts"? Health Policy. 2008;85(1):1-18. Abstract
Technology assessment and the sociopolitics of health technologies. J Health Polit Policy Law. 2000;25(6):1083-120. Abstract
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
Qualitative research
Synthesising qualitative and quantitative evidence: a review of possible methods. J Health Serv Res Policy. 2005;10(1):45-53. Abstract
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
Qualitative research methods in health technology assessment: a review of the literature. Health Technol Assess. 1998;2(16):iii-ix, 1-274.
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
Who can represent patients
Can a health professional represent patient views: industry response. Int J Technol Assess Health Care. 2011;27(4):402.
Who can and who should represent the patient? Int J Technol Assess Health Care. 2011;27(4):403.
Response: I know how you think, so I can help. Int J Technol Assess Health Care. 2011;27(4):402-3.
Can a health professional represent patient views? Int J Technol Assess Health Care. 2011;27(4):400-1.
Can a health professional represent patient views: HTA response. Int J Technol Assess Health Care. 2011;27(4):401.
Can a health professional represent patient view: patient organization response. Int J Technol Assess Health Care. 2011;27(4):401-2.
Methods and reporting
Patient aspects: a review of fifty-eight Danish HTA reports. Int J Technol Assess Health Care. 2011;27(4):330-6. Abstract
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
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
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
Production of patient evidence
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
Focus group research and "the patient's view". Soc Sci Med. 2006;63(8):2091-104. Abstract
Burden of a multiple sclerosis relapse: the patient's perspective. Patient. 2012;5(1):57-69. Abstract
News and social media: windows into community perspectives on disinvestment. Int J Technol Assess Health Care. 2011;27(4):376-83. Abstract
Knowledge in health technology assessment: who, what, how? Int J Technol Assess Health Care. 2011;27(4):324-9. Abstract
Prioritisation
The setting of healthcare priorities through public engagement. Br J Nurs. 2013;22(7):372-6. Abstract
Public participation in health care priority setting: A scoping review. Health Policy. 2009;91(3):219-28. Abstract
Public engagement in choosing health priorities. CMAJ. 2011;183(2):227.
Patient and public involvement, Societial values
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
Harnessing the potential to quantify public preferences for healthcare priorities through citizens' juries. Int J Health Policy Manag. 2014;3(2):57-62. Abstract