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Erschienen in: Journal of Bioethical Inquiry 1/2020

14.02.2020 | Symposium: Pharmaceutical Ethics

Does Consumer Engagement in Health Technology Assessment Enhance or Undermine Equity?

verfasst von: Narcyz Ghinea, Wendy Lipworth, Ian Kerridge

Erschienen in: Journal of Bioethical Inquiry | Ausgabe 1/2020

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Abstract

Consumer engagement in decisions about the funding of medicines is often framed as a good in and of itself and as an activity that should be universally encouraged. A common justification for calls for consumer engagement is that it enhances equity. In this paper we systematically critique this assumption. We show that consumer engagement may undermine equity as well as enhance it and show that a simple relationship cannot be assumed but must be justified and demonstrated. In concluding, we present a number of challenges that need to be overcome in order for consumer engagement to contribute to health technology assessment in a morally and politically sound manner.
Literatur
Zurück zum Zitat Abelson, J., F. Wagner, D. DeJean, et al. 2016. Public and patient involvement in health technology assessment. International Journal of Technology Assessment in Health Care 32(4): 256–264.PubMedCrossRef Abelson, J., F. Wagner, D. DeJean, et al. 2016. Public and patient involvement in health technology assessment. International Journal of Technology Assessment in Health Care 32(4): 256–264.PubMedCrossRef
Zurück zum Zitat Aggarwal, A., T. Fojo, C. Chamberlain, C. Davis, and R. Sullivan. 2017. Do patient access schemes for high-cost cancer drugs deliver value to society?—Lessons from the NHS Cancer Drugs Fund. Annals of Oncology 28(8): 1738–1750.PubMedPubMedCentralCrossRef Aggarwal, A., T. Fojo, C. Chamberlain, C. Davis, and R. Sullivan. 2017. Do patient access schemes for high-cost cancer drugs deliver value to society?—Lessons from the NHS Cancer Drugs Fund. Annals of Oncology 28(8): 1738–1750.PubMedPubMedCentralCrossRef
Zurück zum Zitat Chieffi, A.L., R. Barradas, and M. Golbaum. 2017. Legal access to medications: A threat to Brazil’s public health system. BMC Health Services Research 17: 499.PubMedPubMedCentralCrossRef Chieffi, A.L., R. Barradas, and M. Golbaum. 2017. Legal access to medications: A threat to Brazil’s public health system. BMC Health Services Research 17: 499.PubMedPubMedCentralCrossRef
Zurück zum Zitat Chim, L., G. Salkeld, P. Kelly, W. Lipworth, D. Hughes, and M. Stockler. 2017. Societal perspective on access to publicly subsidised medicines: A cross sectional survey of 3080 adults in Australia. PloS One 12(3): 1–24.CrossRef Chim, L., G. Salkeld, P. Kelly, W. Lipworth, D. Hughes, and M. Stockler. 2017. Societal perspective on access to publicly subsidised medicines: A cross sectional survey of 3080 adults in Australia. PloS One 12(3): 1–24.CrossRef
Zurück zum Zitat Desser, A.S., D. Gyrd-Hansen, J.A. Olsen, S. Grepperud, and I.S. Kristiansen. 2010. Societal views on orphan drugs: Cross sectional survey of Norwegians aged 40 to 67. BMJ 341: c5396CrossRef Desser, A.S., D. Gyrd-Hansen, J.A. Olsen, S. Grepperud, and I.S. Kristiansen. 2010. Societal views on orphan drugs: Cross sectional survey of Norwegians aged 40 to 67. BMJ 341: c5396CrossRef
Zurück zum Zitat Edgar, A. 2013. The dominance of big pharma: Power. Medicine, Health Care, and Philosophy 16(2): 295–304.PubMedCrossRef Edgar, A. 2013. The dominance of big pharma: Power. Medicine, Health Care, and Philosophy 16(2): 295–304.PubMedCrossRef
Zurück zum Zitat Fabbri, A., S. Swandari, E. Lau, A. Vitry, and B Mintzes. 2019. Pharmaceutical industry funding of health consumer groups in Australia: A cross-sectional analysis. International Journal of Health Services 49(2): 273–293.PubMedCrossRef Fabbri, A., S. Swandari, E. Lau, A. Vitry, and B Mintzes. 2019. Pharmaceutical industry funding of health consumer groups in Australia: A cross-sectional analysis. International Journal of Health Services 49(2): 273–293.PubMedCrossRef
Zurück zum Zitat Gagnon, M.P., M. Desmartis, D. Lepage-Savary, et al. 2011. Introducing patients’ and the public’s perspectives to health technology assessment: A systematic review of international experiences. International Journal of Technology Assessment in Health Care 27(1): 31–42.PubMedCrossRef Gagnon, M.P., M. Desmartis, D. Lepage-Savary, et al. 2011. Introducing patients’ and the public’s perspectives to health technology assessment: A systematic review of international experiences. International Journal of Technology Assessment in Health Care 27(1): 31–42.PubMedCrossRef
Zurück zum Zitat Gauvin, F.P., J. Abelson, M. Giacomini, J. Eyles, and J.N. Lavis. 2011. Moving cautiously: Public involvement and the health technology assessment community. International Journal of Technology Assessment in Health Care 27(1): 43–49.PubMedCrossRef Gauvin, F.P., J. Abelson, M. Giacomini, J. Eyles, and J.N. Lavis. 2011. Moving cautiously: Public involvement and the health technology assessment community. International Journal of Technology Assessment in Health Care 27(1): 43–49.PubMedCrossRef
Zurück zum Zitat Ghinea, N. 2019. Citizen science and the politicization of epistemology. The American Journal of Bioethics 19(8): 58–60.PubMedCrossRef Ghinea, N. 2019. Citizen science and the politicization of epistemology. The American Journal of Bioethics 19(8): 58–60.PubMedCrossRef
Zurück zum Zitat Ghinea, N., M. Little, and W. Lipworth. 2017. Access to high cost cancer medicines through the lens of an Australian senate inquiry—Defining the “goods” at stake. Journal of Bioethical Inquiry 14(3): 401–410.PubMedCrossRef Ghinea, N., M. Little, and W. Lipworth. 2017. Access to high cost cancer medicines through the lens of an Australian senate inquiry—Defining the “goods” at stake. Journal of Bioethical Inquiry 14(3): 401–410.PubMedCrossRef
Zurück zum Zitat Hailey, D., S. Werko, R. Bakri, et al. 2013. Involvement of consumers in health technology assessment activities by INAHTA agencies. International Journal of Technology Assessment in Health Care 29(1): 79–83.PubMedCrossRef Hailey, D., S. Werko, R. Bakri, et al. 2013. Involvement of consumers in health technology assessment activities by INAHTA agencies. International Journal of Technology Assessment in Health Care 29(1): 79–83.PubMedCrossRef
Zurück zum Zitat Johnson L. 2018. “Lives are on the line”: Cystic fibrosis patients file class action lawsuit for $250K-a-year drug. CBC News, July 24. Johnson L. 2018. “Lives are on the line”: Cystic fibrosis patients file class action lawsuit for $250K-a-year drug. CBC News, July 24.
Zurück zum Zitat Lau, E., A. Fabbri, and B Mintzes. 2018. How do health consumer organisations in Australia manage pharmaceutical industry sponsorship? A cross-sectional study. Australian Health Review 43(4): 474–480.CrossRef Lau, E., A. Fabbri, and B Mintzes. 2018. How do health consumer organisations in Australia manage pharmaceutical industry sponsorship? A cross-sectional study. Australian Health Review 43(4): 474–480.CrossRef
Zurück zum Zitat Linley, W.G, and D.A. Hughes. 2013. Societal views on NICE, cancer drugs fund and value-based pricing criteria for prioritising medicines: A cross-sectional survey of 4118 adults in Great Britain. Health Economics 22(8):948–964.PubMedCrossRef Linley, W.G, and D.A. Hughes. 2013. Societal views on NICE, cancer drugs fund and value-based pricing criteria for prioritising medicines: A cross-sectional survey of 4118 adults in Great Britain. Health Economics 22(8):948–964.PubMedCrossRef
Zurück zum Zitat Mackenzie, R., S. Chapman, G. Salkeld, and S. Holding. 2008. Holding. Media influence on Herceptin subsidization in Australia: Application of the rule of rescue? Journal of the Royal Society of Medicine 101(6): 305–312.PubMedPubMedCentralCrossRef Mackenzie, R., S. Chapman, G. Salkeld, and S. Holding. 2008. Holding. Media influence on Herceptin subsidization in Australia: Application of the rule of rescue? Journal of the Royal Society of Medicine 101(6): 305–312.PubMedPubMedCentralCrossRef
Zurück zum Zitat McCoy, M.S, M. Carniol, K. Chockley, J.W. Urwin, E.J. Emanuel, and H. Schmidt. 2017. Conflicts of interest for patient-advocacy organizations. The New England Journal of Medicine 376: 880–885.CrossRefPubMed McCoy, M.S, M. Carniol, K. Chockley, J.W. Urwin, E.J. Emanuel, and H. Schmidt. 2017. Conflicts of interest for patient-advocacy organizations. The New England Journal of Medicine 376: 880–885.CrossRefPubMed
Zurück zum Zitat Morris, M., G. Loney, and A. Pancia. 2018. Cystic fibrosis patients get subsidised access to $250,000 drug. ABC News, August 18. Morris, M., G. Loney, and A. Pancia. 2018. Cystic fibrosis patients get subsidised access to $250,000 drug. ABC News, August 18.
Zurück zum Zitat Wale, J., A.M. Scott, B. Hofmann, S. Garner, E. Low, and L. Sansom. 2017. Why patients should be involved in health technology assessment. International Journal of Technology Assessment in Health Care 33(1): 1–4.PubMedCrossRef Wale, J., A.M. Scott, B. Hofmann, S. Garner, E. Low, and L. Sansom. 2017. Why patients should be involved in health technology assessment. International Journal of Technology Assessment in Health Care 33(1): 1–4.PubMedCrossRef
Zurück zum Zitat Wilson, J. 2011. Health inequities. In Public health ethics: Key concepts and issues in policy and practice, edited by A. Dawson, 211–230. Cambridge University Press. Wilson, J. 2011. Health inequities. In Public health ethics: Key concepts and issues in policy and practice, edited by A. Dawson, 211–230. Cambridge University Press.
Zurück zum Zitat Wortley, S., J. Wale, D. Grainger, and P. Murphy. 2017. Moving beyond the rhetoric of patient input in health technology assessment deliberations. Australian Health Review 41(2): 170–172.PubMedCrossRef Wortley, S., J. Wale, D. Grainger, and P. Murphy. 2017. Moving beyond the rhetoric of patient input in health technology assessment deliberations. Australian Health Review 41(2): 170–172.PubMedCrossRef
Metadaten
Titel
Does Consumer Engagement in Health Technology Assessment Enhance or Undermine Equity?
verfasst von
Narcyz Ghinea
Wendy Lipworth
Ian Kerridge
Publikationsdatum
14.02.2020
Verlag
Springer Singapore
Erschienen in
Journal of Bioethical Inquiry / Ausgabe 1/2020
Print ISSN: 1176-7529
Elektronische ISSN: 1872-4353
DOI
https://doi.org/10.1007/s11673-020-09962-1

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