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A checklist for managed access programmes for reimbursement co‐designed by Canadian patients and caregivers

Young, Andrea ; Menon, Devidas ; Street, Jackie ; Al‐Hertani, Walla ; Stafinski, Tania

Health expectations : an international journal of public participation in health care and health policy, 2018-12, Vol.21 (6), p.973-980 [Periódico revisado por pares]

England: John Wiley & Sons, Inc

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Título:
A checklist for managed access programmes for reimbursement co‐designed by Canadian patients and caregivers
Autor: Young, Andrea ; Menon, Devidas ; Street, Jackie ; Al‐Hertani, Walla ; Stafinski, Tania
Assuntos: Access ; Accountability ; Canada ; Caregivers ; Checklist ; Checklists ; Clinical decision making ; Community-Based Participatory Research ; Cooperative Behavior ; Cost-Benefit Analysis ; Decision Making ; Design ; Drugs ; Feasibility ; Governance ; Health care ; Health care access ; Health insurance ; Humans ; International collaboration ; International cooperation ; managed access programmes ; Medical research ; Medicine, Experimental ; Original Research Paper ; Original Research Papers ; Orphan Drug Production - economics ; Orphan drugs ; Participatory action research ; patient input ; patient involvement ; Patient participation ; Patient Participation - methods ; Patients ; Pharmaceutical industry ; rare diseases ; Reimbursement ; Researchers ; Risk Management ; Teams ; Transparency ; Uncertainty ; Workshops
É parte de: Health expectations : an international journal of public participation in health care and health policy, 2018-12, Vol.21 (6), p.973-980
Notas: Funding information
This study was supported by funding from the Canadian Institutes of Health Research Emerging Team Grant (TR3 119194).
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Descrição: Introduction Reimbursement decisions on orphan drugs carry significant uncertainty, and as the amount increases, so does the risk of making a wrong decision, where harms outweigh benefits. Consequently, patients often face limited access to orphan drugs. Managed access programmes (MAPs) are a mechanism for managing risk while enabling access to potentially beneficial drugs. Patients and their caregivers have expressed support for these programmes and see patient input as critical to successful implementation. However, they have yet to be systematically involved in their design. Objective The aim of this study was to co‐design with patients and caregivers a tool for the development of managed access programmes. Methods Building upon established relationships with the Canadian Organization for Rare Disorders, the project team collaborated with patients and caregivers using the principles of participatory action research. Data were collected at two workshops and analysed using a thematic network approach. Results Patients and caregivers co‐designed a checklist comprised of six aspects of an ideal MAP relating to accountability (programme goals); governance (MAP‐specific committee oversight, patient input, international collaboration); and evidence collection (outcome measures and continuation criteria, on‐going monitoring and registries). They recognized that health‐care resources are finite and considered disease or drug eligibility criteria for deciding when to use a MAP (eg drugs treating diseases for which there are no other legitimate alternatives). Conclusions A patient and caregiver‐designed checklist was created, which emphasized patient involvement and transparency. Further research is needed to examine the feasibility of this checklist and roles for other stakeholders.
Editor: England: John Wiley & Sons, Inc
Idioma: Inglês

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A checklist for managed access programmes for reimbursement co‐designed by Canadian patients and caregivers

Young, Andrea ; Menon, Devidas ; Street, Jackie ; Al‐Hertani, Walla ; Stafinski, Tania

England: John Wiley & Sons, Inc

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