Moving beyond the Court of Public Opinion: A Citizens’ Jury Exploring the Public’s Values around Funding Decisions for Ultra-Orphan Drugs
Author
Abstract
Suggested Citation
Download full text from publisher
References listed on IDEAS
- Douglas, Conor M.W. & Wilcox, Elizabeth & Burgess, Michael & Lynd, Larry D., 2015. "Why orphan drug coverage reimbursement decision-making needs patient and public involvement," Health Policy, Elsevier, vol. 119(5), pages 588-596.
- Street, Jackie & Duszynski, Katherine & Krawczyk, Stephanie & Braunack-Mayer, Annette, 2014. "The use of citizens' juries in health policy decision-making: A systematic review," Social Science & Medicine, Elsevier, vol. 109(C), pages 1-9.
- Smith, Richard D. & Richardson, Jeff, 2005. "Can we estimate the `social' value of a QALY?: Four core issues to resolve," Health Policy, Elsevier, vol. 74(1), pages 77-84, September.
- Mentzakis, Emmanouil & Stefanowska, Patricia & Hurley, Jeremiah, 2011. "A discrete choice experiment investigating preferences for funding drugs used to treat orphan diseases: an exploratory study," Health Economics, Policy and Law, Cambridge University Press, vol. 6(3), pages 405-433, July.
Most related items
These are the items that most often cite the same works as this one and are cited by the same works as this one.- Nicod, Elena & Annemans, Lieven & Bucsics, Anna & Lee, Anne & Upadhyaya, Sheela & Facey, Karen, 2019. "HTA programme response to the challenges of dealing with orphan medicinal products: Process evaluation in selected European countries," Health Policy, Elsevier, vol. 123(2), pages 140-151.
- John R. Moodie & Viktor Salenius & Michael Kull, 2022. "From impact assessments towards proactive citizen engagement in EU cohesion policy," Regional Science Policy & Practice, Wiley Blackwell, vol. 14(5), pages 1113-1132, October.
- Desser, Arna S., 2013. "Prioritizing treatment of rare diseases: A survey of preferences of Norwegian doctors," Social Science & Medicine, Elsevier, vol. 94(C), pages 56-62.
- Fischer, Julia & Van de Bovenkamp, Hester M., 2019. "The challenge of democratic patient representation: Understanding the representation work of patient organizations through methodological triangulation," Health Policy, Elsevier, vol. 123(1), pages 109-114.
- Kleinhout-Vliek, Tineke & de Bont, Antoinette & Boer, Bert, 2017. "The bare necessities? A realist review of necessity argumentations used in health care coverage decisions," Health Policy, Elsevier, vol. 121(7), pages 731-744.
- Dale, Elina & Peacocke, Elizabeth F. & Movik, Espen & Voorhoeve, Alex & Ottersen, Trygve & Kurowski, Christoph & Evans, David B. & Norheim, Ole Frithjof & Gopinathan, Unni, 2023. "Criteria for the procedural fairness of health financing decisions: a scoping review," LSE Research Online Documents on Economics 119799, London School of Economics and Political Science, LSE Library.
- repec:cup:judgdm:v:2:y:2007:i::p:96-106 is not listed on IDEAS
- Marta Trapero-Bertran & Beatriz Rodríguez-Martín & Julio López-Bastida, 2019. "What attributes should be included in a discrete choice experiment related to health technologies? A systematic literature review," PLOS ONE, Public Library of Science, vol. 14(7), pages 1-15, July.
- Powdthavee, Nattavudh & van den Berg, Bernard, 2011.
"Putting different price tags on the same health condition: Re-evaluating the well-being valuation approach,"
Journal of Health Economics, Elsevier, vol. 30(5), pages 1032-1043.
- Powdthavee, Nattavudh & van den Berg, Bernard, 2011. "Putting Different Price Tags on the Same Health Condition: Re-evaluating the Well-Being Valuation Approach," IZA Discussion Papers 5493, Institute of Labor Economics (IZA).
- Richard T. Carson, 2011.
"Contingent Valuation,"
Books,
Edward Elgar Publishing, number 2489.
- Carson, Richard T. & Hanemann, W. Michael, 2006. "Contingent Valuation," Handbook of Environmental Economics, in: K. G. Mäler & J. R. Vincent (ed.), Handbook of Environmental Economics, edition 1, volume 2, chapter 17, pages 821-936, Elsevier.
- Degeling, Chris & Rychetnik, Lucie & Street, Jackie & Thomas, Rae & Carter, Stacy M., 2017. "Influencing health policy through public deliberation: Lessons learned from two decades of Citizens'/community juries," Social Science & Medicine, Elsevier, vol. 179(C), pages 166-171.
- Jeremiah Hurley & Emmanouil Mentzakis & Mita Giacomini & Deirdre DeJean & Michel Grignon, 2017. "Non-market resource allocation and the public’s interpretation of need: an empirical investigation in the context of health care," Social Choice and Welfare, Springer;The Society for Social Choice and Welfare, vol. 49(1), pages 117-143, June.
- Laura J. Damschroder & Peter A. Ubel & Jason Riis & Dylan M. Smith, 2007. "An alternative approach for eliciting willingness-to-pay: A randomized Internet trial," Judgment and Decision Making, Society for Judgment and Decision Making, vol. 2, pages 96-106, April.
- Li, Zili & Washington, Simon P. & Zheng, Zuduo & Prato, Carlo G., 2023. "A Bayesian hierarchical approach to the joint modelling of Revealed and stated choices," Journal of choice modelling, Elsevier, vol. 47(C).
- Mike Paulden & Tania Stafinski & Devidas Menon & Christopher McCabe, 2015. "Value-Based Reimbursement Decisions for Orphan Drugs: A Scoping Review and Decision Framework," PharmacoEconomics, Springer, vol. 33(3), pages 255-269, March.
- Oehlmann, Malte & Glenk, Klaus & Lloyd-Smith, Patrick & Meyerhoff, Jürgen, 2021. "Quantifying landscape externalities of renewable energy development: Implications of attribute cut-offs in choice experiments," Resource and Energy Economics, Elsevier, vol. 65(C).
- Tello, Juan E. & Barbazza, Erica & Waddell, Kerry, 2020. "Review of 128 quality of care mechanisms: A framework and mapping for health system stewards," Health Policy, Elsevier, vol. 124(1), pages 12-24.
- López-Bastida, J. & Ramos-Goñi, J.M. & Aranda-Reneo, I. & Trapero-Bertran, M. & Kanavos, P. & Rodriguez Martin, B., 2019. "Using a stated preference discrete choice experiment to assess societal value from the perspective of decision-makers in Europe. Does it work for rare diseases?," Health Policy, Elsevier, vol. 123(2), pages 152-158.
- Rachel Thompson & Zoe Paskins & Barry G. Main & Thaddeus Mason Pope & Evelyn C. Y. Chan & Ben W. Moulton & Michael J. Barry & Clarence H. Braddock III, 2021. "Addressing Conflicts of Interest in Health and Medicine: Current Evidence and Implications for Patient Decision Aid Development," Medical Decision Making, , vol. 41(7), pages 768-779, October.
- Jennifer Whitty & Emily Lancsar & Kylie Rixon & Xanthe Golenko & Julie Ratcliffe, 2014. "A Systematic Review of Stated Preference Studies Reporting Public Preferences for Healthcare Priority Setting," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 7(4), pages 365-386, December.
- Moser, Riccarda & Raffaelli, Roberta, 2014. "Does attribute cut-off elicitation affect choice consistency? Contrasting hypothetical and real-money choice experiments," Journal of choice modelling, Elsevier, vol. 11(C), pages 16-29.
More about this item
Keywords
rare diseases; value; citizen jury; resource allocation; drug funding;All these keywords.
Statistics
Access and download statisticsCorrections
All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:20:y:2022:i:1:p:633-:d:1019756. See general information about how to correct material in RePEc.
If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.
If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .
If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.
For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .
Please note that corrections may take a couple of weeks to filter through the various RePEc services.