Privacy issues must be overcome to allow patient notes to be used to help manage COVID-19

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GPs' notes, currently unavailable to medical researchers because of patient privacy issues, could provide clues to help manage major health crises such as COVID-19.

And, according to a 'citizens' jury' study at Brighton and Sussex Medical School (BSMS), the main thing stopping the use of such information – concerns over patient privacy – could be overcome.

Lead author Dr Elizabeth Ford, senior lecturer in primary care research at BSMS, said: "In these times of a new and unknown disease like COVID-19, we really need all the health data we can get, in order to develop effective treatment quickly.

"For example, we've seen that the number of 'excess' deaths over the last few months doesn't tally with the number of actual deaths attributed to coronavirus. Maybe information recorded by doctors during patient consultations could give us vital clues to understand these missing diagnoses?

"Patient notes, letters and reports held within medical records contain a range of valuable information that is currently unavailable to researchers. Understandably, there are concerns about private details being made available for research but, if we can find a way past that, research could benefit public health hugely.

"That's why we ran this study, and found that although they were cautious about privacy, members of the public were largely supportive of the information being made available to university researchers."

Currently the structured parts of patients' medical notes are used in an anonymised way for health research, helping to develop major improvements in health care. Until now, however, the patient notes, where a doctor might write a summary regarding a patient's visit, and letters and reports following scans or visits to hospital, have not been available for health research – largely due to concerns about protecting privacy.

Advances in computer science and text analytics mean that researchers are now able to extract specific clinical information from large quantities of patient documents and analyse many patient records at once.

During a three-day citizens' jury, 18 members of the public heard a range of expert presentations and arguments for and against sharing free text (from patient letters and notes from general practice and mental health care), and then questioned presenters and deliberated together.

Ford said: "Jurors were largely supportive of using patient notes and letters for medical research, but felt people had the right to know what their medical data might be used for, so they could choose to opt out. They also wanted to see a clear commitment to improving technology to protect patient privacy.

"While this was obviously a small study on a complex subject, the results show a public interest in making free text data available to health researchers. Next steps would involve a larger study to gauge wider public interest in how we might be able to make such health information available while protecting patient privacy."

The study was supported by the UK Healthcare Text Analytics Network, which is funded by the Engineering and Physical Sciences Research Council (EPSRC).

Background: Use of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical policy.
Methods: Eighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns.
Results: Jurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing.
Conclusions: Informed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data.

Elizabeth Ford, Malcolm Oswald, Lamiece Hassan, Kyle Bozentko, Goran Nenadic, Jackie Cassell


University of Sussex material


Journal of Medical Ethics abstract

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