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Mapping Canadian Data Assets to Generate Real-World Evidence: Lessons Learned from Canadian Real-World Evidence for Value of Cancer Drugs (CanREValue) Collaboration’s RWE Data Working Group
Canadian provinces routinely collect patient-level data for administrative purposes. These real-world data (RWD) can be used to generate real-world evidence (RWE) to inform clinical care and healthcare policy. The CanREValue Collaboration is developing a framework for the use of RWE in cancer drug f...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947246/ https://www.ncbi.nlm.nih.gov/pubmed/35323365 http://dx.doi.org/10.3390/curroncol29030165 |
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author | Dai, Wei Fang de Oliveira, Claire Blommaert, Scott Pataky, Reka E. Tran, David Aurangzeb, Zeb Kendell, Cynthia Folkins, Chris Somayaji, Chandy Dowden, Jeff Cheung, Winson Strumpf, Erin Beca, Jaclyn M. McClure, Carol Urquhart, Robin McDonald, James Ted Alvi, Riaz Turner, Donna Peacock, Stuart Denburg, Avram Mercer, Rebecca E. Muñoz, Caroline Parmar, Ambica Tadrous, Mina Takhar, Pam Chan, Kelvin K. W. |
author_facet | Dai, Wei Fang de Oliveira, Claire Blommaert, Scott Pataky, Reka E. Tran, David Aurangzeb, Zeb Kendell, Cynthia Folkins, Chris Somayaji, Chandy Dowden, Jeff Cheung, Winson Strumpf, Erin Beca, Jaclyn M. McClure, Carol Urquhart, Robin McDonald, James Ted Alvi, Riaz Turner, Donna Peacock, Stuart Denburg, Avram Mercer, Rebecca E. Muñoz, Caroline Parmar, Ambica Tadrous, Mina Takhar, Pam Chan, Kelvin K. W. |
author_sort | Dai, Wei Fang |
collection | PubMed |
description | Canadian provinces routinely collect patient-level data for administrative purposes. These real-world data (RWD) can be used to generate real-world evidence (RWE) to inform clinical care and healthcare policy. The CanREValue Collaboration is developing a framework for the use of RWE in cancer drug funding decisions. A Data Working Group (WG) was established to identify data assets across Canada for generating RWE of oncology drugs. The mapping exercise was conducted using an iterative scan with informant surveys and teleconference. Data experts from ten provinces convened for a total of three teleconferences and two in-person meetings from March 2018 to September 2019. Following each meeting, surveys were developed and shared with the data experts which focused on identifying databases and data elements, as well as a feasibility assessment of conducting RWE studies using existing data elements and resources. Survey responses were compiled into an interim data report, which was used for public stakeholder consultation. The feedback from the public consultation was used to update the interim data report. We found that databases required to conduct real-world studies are often held by multiple different data custodians. Ninety-seven databases were identified across Canada. Provinces held on average 9 distinct databases (range: 8–11). An Essential RWD Table was compiled that contains data elements that are necessary, at a minimal, to conduct an RWE study. An Expanded RWD Table that contains a more comprehensive list of potentially relevant data elements was also compiled and the availabilities of these data elements were mapped. While most provinces have data on patient demographics (e.g., age, sex) and cancer-related variables (e.g., morphology, topography), the availability and linkability of data on cancer treatment, clinical characteristics (e.g., morphology and topography), and drug costs vary among provinces. Based on current resources, data availability, and access processes, data experts in most provinces noted that more than 12 months would be required to complete an RWE study. The CanREValue Collaboration’s Data WG identified key data holdings, access considerations, as well as gaps in oncology treatment-specific data. This data catalogue can be used to facilitate future oncology-specific RWE analyses across Canada. |
format | Online Article Text |
id | pubmed-8947246 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-89472462022-03-25 Mapping Canadian Data Assets to Generate Real-World Evidence: Lessons Learned from Canadian Real-World Evidence for Value of Cancer Drugs (CanREValue) Collaboration’s RWE Data Working Group Dai, Wei Fang de Oliveira, Claire Blommaert, Scott Pataky, Reka E. Tran, David Aurangzeb, Zeb Kendell, Cynthia Folkins, Chris Somayaji, Chandy Dowden, Jeff Cheung, Winson Strumpf, Erin Beca, Jaclyn M. McClure, Carol Urquhart, Robin McDonald, James Ted Alvi, Riaz Turner, Donna Peacock, Stuart Denburg, Avram Mercer, Rebecca E. Muñoz, Caroline Parmar, Ambica Tadrous, Mina Takhar, Pam Chan, Kelvin K. W. Curr Oncol Commentary Canadian provinces routinely collect patient-level data for administrative purposes. These real-world data (RWD) can be used to generate real-world evidence (RWE) to inform clinical care and healthcare policy. The CanREValue Collaboration is developing a framework for the use of RWE in cancer drug funding decisions. A Data Working Group (WG) was established to identify data assets across Canada for generating RWE of oncology drugs. The mapping exercise was conducted using an iterative scan with informant surveys and teleconference. Data experts from ten provinces convened for a total of three teleconferences and two in-person meetings from March 2018 to September 2019. Following each meeting, surveys were developed and shared with the data experts which focused on identifying databases and data elements, as well as a feasibility assessment of conducting RWE studies using existing data elements and resources. Survey responses were compiled into an interim data report, which was used for public stakeholder consultation. The feedback from the public consultation was used to update the interim data report. We found that databases required to conduct real-world studies are often held by multiple different data custodians. Ninety-seven databases were identified across Canada. Provinces held on average 9 distinct databases (range: 8–11). An Essential RWD Table was compiled that contains data elements that are necessary, at a minimal, to conduct an RWE study. An Expanded RWD Table that contains a more comprehensive list of potentially relevant data elements was also compiled and the availabilities of these data elements were mapped. While most provinces have data on patient demographics (e.g., age, sex) and cancer-related variables (e.g., morphology, topography), the availability and linkability of data on cancer treatment, clinical characteristics (e.g., morphology and topography), and drug costs vary among provinces. Based on current resources, data availability, and access processes, data experts in most provinces noted that more than 12 months would be required to complete an RWE study. The CanREValue Collaboration’s Data WG identified key data holdings, access considerations, as well as gaps in oncology treatment-specific data. This data catalogue can be used to facilitate future oncology-specific RWE analyses across Canada. MDPI 2022-03-17 /pmc/articles/PMC8947246/ /pubmed/35323365 http://dx.doi.org/10.3390/curroncol29030165 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Commentary Dai, Wei Fang de Oliveira, Claire Blommaert, Scott Pataky, Reka E. Tran, David Aurangzeb, Zeb Kendell, Cynthia Folkins, Chris Somayaji, Chandy Dowden, Jeff Cheung, Winson Strumpf, Erin Beca, Jaclyn M. McClure, Carol Urquhart, Robin McDonald, James Ted Alvi, Riaz Turner, Donna Peacock, Stuart Denburg, Avram Mercer, Rebecca E. Muñoz, Caroline Parmar, Ambica Tadrous, Mina Takhar, Pam Chan, Kelvin K. W. Mapping Canadian Data Assets to Generate Real-World Evidence: Lessons Learned from Canadian Real-World Evidence for Value of Cancer Drugs (CanREValue) Collaboration’s RWE Data Working Group |
title | Mapping Canadian Data Assets to Generate Real-World Evidence: Lessons Learned from Canadian Real-World Evidence for Value of Cancer Drugs (CanREValue) Collaboration’s RWE Data Working Group |
title_full | Mapping Canadian Data Assets to Generate Real-World Evidence: Lessons Learned from Canadian Real-World Evidence for Value of Cancer Drugs (CanREValue) Collaboration’s RWE Data Working Group |
title_fullStr | Mapping Canadian Data Assets to Generate Real-World Evidence: Lessons Learned from Canadian Real-World Evidence for Value of Cancer Drugs (CanREValue) Collaboration’s RWE Data Working Group |
title_full_unstemmed | Mapping Canadian Data Assets to Generate Real-World Evidence: Lessons Learned from Canadian Real-World Evidence for Value of Cancer Drugs (CanREValue) Collaboration’s RWE Data Working Group |
title_short | Mapping Canadian Data Assets to Generate Real-World Evidence: Lessons Learned from Canadian Real-World Evidence for Value of Cancer Drugs (CanREValue) Collaboration’s RWE Data Working Group |
title_sort | mapping canadian data assets to generate real-world evidence: lessons learned from canadian real-world evidence for value of cancer drugs (canrevalue) collaboration’s rwe data working group |
topic | Commentary |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947246/ https://www.ncbi.nlm.nih.gov/pubmed/35323365 http://dx.doi.org/10.3390/curroncol29030165 |
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