Safeguarding emerging technologies in health
"We need to protect patient trust in a confidential health service while, at the same time, enabling uses of health data that improve care for everyone"
Good health data governance mus support new and better ways of sharing and using health data while also improving data security and better protecting privacy.
Why this matters
At a time when healthcare systems around the world are facing challenges associated with equitable access to high value care, rising costs, aging populations, and an increasing burden of complex chronic disease, there is a need to get better at using the data held by, often fragmented, highly localise, secure systems.
The data that we want to improve access to is, however, some of the most private, sensitive and potentially stigmatising personal information that exists about a person. It is shared by patients with healthcare professionals, often within a trusting relationship, for the purpose of providing them with safe and effective care.
We need to build a learning healthcare system, with partnerships across public and private sector, without jeopardising a patient's trust that they can be entirely candid with their doctor. The challenge is creating a technical, social, and regulatory environment in which people can continue to reveal their secrets while allowing data to flow for public good.
We are finding ways to guard the confidential relationship between doctor and patient while enabling the use of health data for public good in a modern, datat-driven, healthcare system.
Our impact
Our research into trustworthy health data governance informs regulatory reform and policy development. We examine key legal concepts, such as confidentiality, privacy, and public interest, and explain how they can be used to protect and promote patient and public trust in confidential healthcare service: giving healthcare professionals and health researchers confidence in what they can (and should) do with health data while detailing the safeguards, controls, and remedies needed to hold persons and systems accountable.
We are now working within a nationa consortium to identify governance solutions for clinical and genomic datasets and develop hese into a national governance framework.
My work previously informed the position on patient opt out to research and public health use of health data in England and Wales and to the understanding of public interest used by the Confidentiality Advisory Group in England.
I helped draft the OECD recommendations on health data governance and am currently on secondment with the Australian Government Department of Health and Aged Care supporting a refresh of the Framework to guide research and public health use of My Health Record Data.
Our work is helping to push for regulatory recognition of the value and importance of data that relates to individuals as members of groups, and groups as groups, to address what we consider to be a short-sighted failure to adequately regulate beyond information about identified or identifiable individuals.
