An expert panel formed by the Council of Canadian Academies (CCA) has made five recommendations for improving access to health and health-related data while balancing privacy.
The CCA was tasked by Canadian Institutes of Health Research (CIHR) to review the current state of knowledge regarding timely access to health and “health-related” (i.e. social determinants of health) data for health research and health system innovation in Canada.
The panel reviewed six successful examples of organizations as models for establishing best practices, three international and three Canadian, including Ontario’s Institute for Clinical Evaluative Sciences. All six were deemed successful in enabling timely and appropriate use of data while managing risk, respecting privacy and maintaining the public trust.
The expert panel’s findings were:
- Canada must solve the challenge of bringing disparate sources of data together and presenting it in an “analysis-ready” format. Despite the fact that Canada has a wealth of health and health-related data, “much of this potential is not being fully realized due to an incoherent maze of rules, procedures and practices.”
- Timely access to data has proven benefits for health care and the overall health of Canadians – such as providing local health benefits, lowering costs and saving time for new research, enabling new types of research, reducing bias and more.
- The risk of harm from data access is tangible but low – and can be further lowered through effective governance mechanisms. Of the six exemplar organizations, none had experienced a breach of access.
- Access is hindered by variable legal structures and differing interpretations of the terms “identifiable” and “de-identified.” The panel recommends viewing de-identification as a continuum and adjusting controls accordingly. Not only are rules unclear about allowing access to data, the report points out the fact that these rules rarely indicate whether the data should be shared. Given that there are no rewards for sharing the data, and only penalties if there is a data breach, researchers and institutions often tend towards not granting access.
- Data governance should move from the concept of “data custodianship” to a “data stewardship” model. Organizations, institutions, programs and activities that deal with health and health-related data should, either through adaptation, or through government review and redesign, take on a “data stewardship” model, “in which enabling access is a core…objective proportionately balanced with protecting privacy.” In contrast, the current system most often promotes holding and securing data, interfering with timely and appropriate access.
This report dealt with only the research use of data, and not its use within the healthcare system, for policy development or for innovation. The objective of the OPMN Data Report is to bring all four of these interdependent interests together to discuss how to enhance the use of health and health-related data for the benefit of all parties. The CCA report findings will be informative in these discussions.
By: Kathryn Deuchars, Director, Ontario Personalized Medicine Network