Participatory governance over research in an academic research network: the case of Diabetes Action Canada
| Autor: | Donald J. Willison, Joslyn Trowbridge, Karim Keshavjee, Frank Sullivan, Doug Mumford, Michelle Greiver |
|---|---|
| Přispěvatelé: | University of St Andrews. School of Medicine, University of St Andrews. Sir James Mackenzie Institute for Early Diagnosis, University of St Andrews. Population and Behavioural Science Division |
| Rok vydání: | 2019 |
| Předmět: |
Canada
Quality management Biomedical Research media_common.quotation_subject T-NDAS research governance Datasets as Topic Impartiality Health Informatics Data governance information governance ZA4050 03 medical and health sciences 0302 clinical medicine SDG 3 - Good Health and Well-being Reflexivity Diabetes Mellitus Medicine Humans participatory governance Information governance 030212 general & internal medicine media_common ZA4050 Electronic information resources business.industry Corporate governance Data Collection Communication General Medicine Public relations 3. Good health Rule of law Health Records Personal Accountability RA Public aspects of medicine RC Internal medicine business RA 030217 neurology & neurosurgery Confidentiality RC Ethics Committees Research |
| Zdroj: | BMJ Open |
| ISSN: | 2044-6055 |
| Popis: | This 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). Digital 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. Publisher PDF |
| Databáze: | OpenAIRE |
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