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dc.contributor.authorWillison, Donald J
dc.contributor.authorTrowbridge, Joslyn
dc.contributor.authorGreiver, Michelle
dc.contributor.authorKeshavjee, Karim
dc.contributor.authorMumford, Doug
dc.contributor.authorSullivan, Frank
dc.identifier.citationWillison , D J , Trowbridge , J , Greiver , M , Keshavjee , K , Mumford , D & Sullivan , F 2019 , ' Participatory governance over research in an academic research network : the case of Diabetes Action Canada ' , BMJ Open , vol. 9 , no. 4 , e026828 .
dc.identifier.otherPURE: 258699773
dc.identifier.otherPURE UUID: bbedf639-bc61-434a-890d-d52e06accac9
dc.identifier.otherPubMed: 31005936
dc.identifier.otherScopus: 85064993215
dc.identifier.otherWOS: 000471157200217
dc.descriptionThis work was supported by Diabetes Action Canada, which is funded, in part, through a Canadian Institutes of Health Research chronic disease network grant under the Strategy for Patient-Oriented Research (Funding Reference number: SCA 145101).en
dc.description.abstractDigital data generated in the course of clinical care are increasingly being leveraged for a wide range of secondary purposes. Researchers need to develop governance policies that can assure the public that their information is being used responsibly. Our aim was to develop a generalisable model for governance of research emanating from health data repositories that will invoke the trust of the patients and the healthcare professionals whose data are being accessed for health research. We developed our governance principles and processes through literature review and iterative consultation with key actors in the research network including: a data governance working group, the lead investigators and patient advisors. We then recruited persons to participate in the governing and advisory bodies. Our governance process is informed by eight principles: (1) transparency; (2) accountability; (3) follow rule of law; (4) integrity; (5) participation and inclusiveness; (6) impartiality and independence; (7) effectiveness, efficiency and responsiveness and (8) reflexivity and continuous quality improvement. We describe the rationale for these principles, as well as their connections to the subsequent policies and procedures we developed. We then describe the function of the Research Governing Committee, the majority of whom are either persons living with diabetes or physicians whose data are being used, and the patient and data provider advisory groups with whom they consult and communicate. In conclusion, we have developed a values-based information governance framework and process for Diabetes Action Canada that adds value over-and-above existing scientific and ethics review processes by adding a strong patient perspective and contextual integrity. This model is adaptable to other secure data repositories.
dc.relation.ispartofBMJ Openen
dc.rights© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:
dc.subjectRA Public aspects of medicineen
dc.subjectRC Internal medicineen
dc.subjectZA4050 Electronic information resourcesen
dc.titleParticipatory governance over research in an academic research network : the case of Diabetes Action Canadaen
dc.typeJournal articleen
dc.description.versionPublisher PDFen
dc.contributor.institutionUniversity of St Andrews.School of Medicineen
dc.contributor.institutionUniversity of St Andrews.Sir James Mackenzie Institute for Early Diagnosisen
dc.contributor.institutionUniversity of St Andrews.Population and Behavioural Science Divisionen
dc.description.statusPeer revieweden

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