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Current Oncology
Volume 29
Issue 8
10.3390/curroncol29080443
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Commentary

Engaging Patients in the Canadian Real-World Evidence for Value in Cancer Drugs (CanREValue) Initiative: Processes and Lessons Learned

by
William K. Evans
1,
Pam Takhar
2,
Valerie McDonald
3,
Martine Elias
4,
Louise Binder
5,
Stéphanie Michaud
6,
Mina Tadrous
7,
Caroline Muñoz
2 and
Kelvin K. W. Chan
8,9,10,*
1
Department of Oncology, McMaster University, Hamilton, ON L8S 4L8, Canada
2
Ontario Health (CCO), Toronto, ON M5G 2L3, Canada
3
Independent Patient Representative, Toronto, ON M6G 2V3, Canada
4
Myeloma Canada, Dorval, QC H9P 2V4, Canada
5
Save Your Skin Foundation, Penticton, BC V2A 0B2, Canada
6
BioCanRx, Ottawa, ON K1H 8L6, Canada
7
Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON M5S 3M2, Canada
8
Temerty Faculty of Medicine, University of Toronto, Toronto, ON M5S 1A8, Canada
9
Canadian Centre for Applied Research in Cancer Control, Toronto, ON M5G 2L3, Canada
10
Sunnybrook Health Sciences Centre, Toronto, ON M4N 3M3, Canada
*
Author to whom correspondence should be addressed.
Curr. Oncol. 2022, 29(8), 5616-5626; https://doi.org/10.3390/curroncol29080443
Submission received: 9 June 2022 / Revised: 15 July 2022 / Accepted: 1 August 2022 / Published: 7 August 2022
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Abstract

The Canadian Real-world Evidence for Value in Cancer Drugs (CanREValue) Collaboration established the Engagement Working Group (WG) to ensure that all key stakeholders had an opportunity to provide input into the development and implementation of the CanREValue Real-World Evidence (RWE) Framework. Two consultations were held in 2021 to solicit patient perspectives on key policy and data access issues identified in the interim policy and data WG reports. Over 30 individuals, representing patients, caregivers, advocacy leaders, and individuals engaged in patient research were invited to participate. The consultations provided important feedback and valuable lessons in patient engagement. Patient leaders actively shaped the process and content of the consultation. Breakout groups facilitated by patient advocacy leaders gave the opportunity for open and thoughtful contributions from all participants. Important recommendations were made: the RWE framework should not impede access to new drugs; it should be used to support conditional approvals; patient relevant endpoints should be captured in provincial datasets; access to data to conduct RWE should be improved; and privacy issues must be considered. The manuscript documents the CanREValue experience of engaging patients in a consultative process and the useful contributions that can be achieved when the processes to engage are guided by patients themselves.
Keywords: patient engagement; real-world evidence; health technology assessment; reassessment patient engagement; real-world evidence; health technology assessment; reassessment

Share and Cite

MDPI and ACS Style

Evans, W.K.; Takhar, P.; McDonald, V.; Elias, M.; Binder, L.; Michaud, S.; Tadrous, M.; Muñoz, C.; Chan, K.K.W. Engaging Patients in the Canadian Real-World Evidence for Value in Cancer Drugs (CanREValue) Initiative: Processes and Lessons Learned. Curr. Oncol. 2022, 29, 5616-5626. https://doi.org/10.3390/curroncol29080443

AMA Style

Evans WK, Takhar P, McDonald V, Elias M, Binder L, Michaud S, Tadrous M, Muñoz C, Chan KKW. Engaging Patients in the Canadian Real-World Evidence for Value in Cancer Drugs (CanREValue) Initiative: Processes and Lessons Learned. Current Oncology. 2022; 29(8):5616-5626. https://doi.org/10.3390/curroncol29080443

Chicago/Turabian Style

Evans, William K., Pam Takhar, Valerie McDonald, Martine Elias, Louise Binder, Stéphanie Michaud, Mina Tadrous, Caroline Muñoz, and Kelvin K. W. Chan. 2022. "Engaging Patients in the Canadian Real-World Evidence for Value in Cancer Drugs (CanREValue) Initiative: Processes and Lessons Learned" Current Oncology 29, no. 8: 5616-5626. https://doi.org/10.3390/curroncol29080443

APA Style

Evans, W. K., Takhar, P., McDonald, V., Elias, M., Binder, L., Michaud, S., Tadrous, M., Muñoz, C., & Chan, K. K. W. (2022). Engaging Patients in the Canadian Real-World Evidence for Value in Cancer Drugs (CanREValue) Initiative: Processes and Lessons Learned. Current Oncology, 29(8), 5616-5626. https://doi.org/10.3390/curroncol29080443

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