Hostname: page-component-cd9895bd7-q99xh Total loading time: 0 Render date: 2024-12-23T07:21:41.509Z Has data issue: false hasContentIssue false
  • English
  • Français

EXPLORING VALUES OF HEALTH TECHNOLOGY ASSESSMENT AGENCIES USING REFLECTIVE MULTICRITERIA AND RARE DISEASE CASE

Published online by Cambridge University Press:  11 October 2017

Mireille M. Goetghebeur ,
Monika Wagner ,
Dima Samaha ,
William O'Neil ,
Danielle Badgley ,
Hector Castro-Jaramillo ,
Payam Abrishami ,
Antonio Sarria-Santamera ,
Irina Cleemput  and
Michele Tringali
Mireille M. Goetghebeur
Affiliation:
LASER School of Public Health, University of [email protected]
Monika Wagner
Affiliation:
LASER
Dima Samaha
Affiliation:
LASER
William O'Neil
Affiliation:
LASER
Danielle Badgley
Affiliation:
LASER
Hector Castro-Jaramillo
Affiliation:
Ministry of Health, Colombia
Payam Abrishami
Affiliation:
National Health Care Institute ZINL
Antonio Sarria-Santamera
Affiliation:
Agencia de Evaluación de Tecnologias Sanitarias (AETS) of Instituto de Salud Carlos III, Faculty of Medicine, University of Alcalá
Irina Cleemput
Affiliation:
Belgian Health Care Knowledge Centre (KCE)
Michele Tringali
Affiliation:
Lombardia Health Directorate
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives: Tackling ethical dilemmas faced by reimbursement decision makers requires deeper understanding of values on which health technology assessment (HTA) agencies are founded and how trade-offs are made. This was explored in this study including the case of rare disease.

Methods: Representatives from eight HTA explored values on which institutions are founded using a narrative approach and reflective multicriteria (developed from EVIDEM, criteria derived from ethical imperatives of health care). Trade-offs between criteria and the impact of incorporating defined priorities (including for rare diseases) were explored through a quantitative values elicitation exercise.

Results: Participants reported a diversity of substantive and procedural values with a common emphasis on scientific excellence, stakeholder involvement, independence, and transparency. Examining the ethical imperatives behind EVIDEM criteria was found to be useful to further explore substantive values. Most criteria were deemed to reflect institutions’ values, while 70 percent of the criteria were reported by at least half of participants to be considered formally by their institutions. The quantitative values elicitation highlighted the difficulty to balance imperatives of “alleviating or preventing patient suffering,” “serving the whole population equitably,” “upholding healthcare system sustainability,” and “making decisions informed by evidence and context” but may help share the ethical reasoning behind decisions. Incorporating “Priorities” (including for rare diseases) helped reveal trade-offs from other criteria and their underlying ethical imperatives.

Conclusions: Reflective multicriteria are useful to explore substantive values of HTAs, reflect how these values and their ethical underpinnings can be operationalized into criteria, and explore the ethical reasoning at the heart of the healthcare debate.

Keywords

HTAValuesEthicsReflective MulticriteriaRare disease
Type
Assessments
Information
International Journal of Technology Assessment in Health Care , Volume 33 , Issue 4: Mini-Theme: Stories of HTA Impact , 2017 , pp. 504 - 520
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

1. Sabin, JE, Cochran, D. Confronting trade-offs in health care: Harvard Pilgrim Health Care's organizational ethics program. Health Aff (Millwood). 2007;26:1129–1134.Google Scholar
2. Berwick, DM, Nolan, TW, Whittington, J. The triple aim: Care, health, and cost. Health Aff (Millwood). 2008;27:759–769.CrossRefGoogle ScholarPubMed
3. Neumann, PJ, Cohen, JT. Measuring the value of prescription drugs. N Engl J Med. 2015;373:2595–2597.Google Scholar
4. Wagner, M, Khoury, H, Willet, J, Rindress, D, Goetghebeur, M. Can the EVIDEM framework tackle issues raised by evaluating treatments for rare diseases: Analysis of issues and policies, and context-specific adaptation. Pharmacoeconomics. 2016;34:285–301.CrossRefGoogle ScholarPubMed
5. Tambuyzer, E. Rare diseases, orphan drugs and their regulation: Questions and misconceptions. Nat Rev Drug Discov. 2010;9: 921–929.Google Scholar
6. Daniels, N, van der Wilt, GJ. Health technology assessment, deliberative process, and ethically contested issues. Int J Technol Assess Health Care. 2016;32:10–15.Google Scholar
7. Biron, L, Rumbold, B, Faden, R. Social value judgments in healthcare: A philosophical critique. J Health Organ Manag. 2012;26: 317–330.Google Scholar
8. Clark, S, Weale, A. Social values in health priority setting: A conceptual framework. J Health Organ Manag. 2012;26:293–316.CrossRefGoogle ScholarPubMed
9. Daniels, N, Porteny, T, Urritia, J. Expanded HTA: Enhancing fairness and legitimacy. Int J Health Policy Manag. 2015;5:1–3.Google Scholar
10. Daniels, N, Sabin, J. Limits to health care: Fair procedures, democratic deliberation, and the legitimacy problem for insurers. Philos Public Aff. 1997;26:303–350.Google Scholar
11. Baltussen, R, Jansen, MP, Mikkelsen, E, et al. Priority setting for universal health coverage: We need evidence-informed deliberative processes, not just more evidence on cost-effectiveness. Int J Health Policy Manag. 2016;5:615–618.Google Scholar
12. Hofmann, B, Cleemput, I, Bond, K, Krones, T, Droste, S, Sacchini, D et al. Revealing and acknowledging value judgments in health technology assessment. Int J Technol Assess Health Care. 2014;30:579–586.Google Scholar
13. Goetghebeur, MM, Wagner, M, Khoury, H, et al. Evidence and value: Impact on DEcisionMaking–the EVIDEM framework and potential applications. BMC Health Serv Res. 2008;8:270.CrossRefGoogle ScholarPubMed
14. Tanios, N, Wagner, M, Tony, M, et al. 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;29:456–465.CrossRefGoogle ScholarPubMed
15. Fotaki, M. Why and how is compassion necessary to provide good quality healthcare? Int J Health Policy Manag. 2015;4:199–201.Google Scholar
16. Baltussen, R, Niessen, L. Priority setting of health interventions: The need for multi-criteria decision analysis. Cost Eff Resour Alloc. 2006;4:14.Google Scholar
17. Thokala, P, Devlin, N, Marsh, K, et al. Multiple criteria decision analysis for health care decision making - An introduction. Report 1 of the ISPOR MCDA Emerging Good Practices Task Force. Value Health. 2016;19:1–13.Google Scholar
18. Baeroe, K, Baltussen, R. Legitimate healthcare limit setting in a real-world setting: Integrating accountability for reasonableness and multi-criteria decision analysis. Publ Health Ethics. 2014;7:98–111.Google Scholar
19. Goetghebeur, MM, Castro Jaramillo, H, Baltusen, R, Daniels, N. The art of priority setting. Lancet. 2017;389:2368–2369.Google Scholar