Cargando…

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...

Descripción completa

Detalles Bibliográficos
Autores principales: 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.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
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
_version_ 1784674390840967168
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
work_keys_str_mv AT daiweifang mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT deoliveiraclaire mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT blommaertscott mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT patakyrekae mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT trandavid mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT aurangzebzeb mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT kendellcynthia mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT folkinschris mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT somayajichandy mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT dowdenjeff mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT cheungwinson mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT strumpferin mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT becajaclynm mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT mcclurecarol mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT urquhartrobin mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT mcdonaldjamested mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT alviriaz mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT turnerdonna mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT peacockstuart mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT denburgavram mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT mercerrebeccae mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT munozcaroline mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT parmarambica mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT tadrousmina mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT takharpam mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT chankelvinkw mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup
AT mappingcanadiandataassetstogeneraterealworldevidencelessonslearnedfromcanadianrealworldevidenceforvalueofcancerdrugscanrevaluecollaborationsrwedataworkinggroup