Citizens, Research Ethics Committee Members and Researchers' Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems. Cumyn, A., Dault, R., Barton, A., Cloutier, A., & Ethier, J. Journal of empirical research on human research ethics, 16(3):165–178, July, 2021. ![Citizens, Research Ethics Committee Members and Researchers' Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems [link]](https://bibbase.org/img/filetypes/link.svg "link")
Paper doi abstract bibtex A survey was conducted to assess citizens, research ethics committee members, and researchers' attitude toward information and consent for the secondary use of health data for research within learning health systems (LHSs). Results show that the reuse of health data for research to advance knowledge and improve care is valued by all parties; consent regarding health data reuse for research has fundamental importance particularly to citizens; and all respondents deemed important the existence of a secure website to support the information and consent processes. This survey was part of a larger project that aims at exploring public perspectives on alternate approaches to the current consent models for health data reuse to take into consideration the unique features of LHSs. The revised model will need to ensure that citizens are given the opportunity to be better informed about upcoming research and have their say, when possible, in the use of their data.
@article{cumyn_citizens_2021,
title = {Citizens, {Research} {Ethics} {Committee} {Members} and {Researchers}' {Attitude} {Toward} {Information} and {Consent} for the {Secondary} {Use} of {Health} {Data}: {Implications} for {Research} {Within} {Learning} {Health} {Systems}},
volume = {16},
issn = {1556-2654},
shorttitle = {Citizens, {Research} {Ethics} {Committee} {Members} and {Researchers}' {Attitude} {Toward} {Information} and {Consent} for the {Secondary} {Use} of {Health} {Data}},
url = {http://dx.doi.org/10.1177/1556264621992214},
doi = {10.1177/1556264621992214},
abstract = {A survey was conducted to assess citizens, research ethics committee members, and researchers' attitude toward information and consent for the secondary use of health data for research within learning health systems (LHSs). Results show that the reuse of health data for research to advance knowledge and improve care is valued by all parties; consent regarding health data reuse for research has fundamental importance particularly to citizens; and all respondents deemed important the existence of a secure website to support the information and consent processes. This survey was part of a larger project that aims at exploring public perspectives on alternate approaches to the current consent models for health data reuse to take into consideration the unique features of LHSs. The revised model will need to ensure that citizens are given the opportunity to be better informed about upcoming research and have their say, when possible, in the use of their data.},
language = {eng},
number = {3},
journal = {Journal of empirical research on human research ethics},
author = {Cumyn, Annabelle and Dault, Roxanne and Barton, Adrien and Cloutier, Anne-Marie and Ethier, Jean-François},
month = jul,
year = {2021},
keywords = {Attitude, CLARET\_ARTICLE\_PHASE1, Ethics Committees, Research, FRQS-Documents revus et publiés, Humans, Informed Consent, Journal Article, Learning Health System, Research Personnel, health data, informed consent, learning health systems, research ethics, secondary use, survey},
pages = {165--178},
}
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