Use of Personal Health Information to Assess the Safety of Medicines: What a Citizens' Jury Decided

An informed public does not place personal privacy above societal benefits when it comes to using and linking health information for research, according to the outcome of deliberations by a citizens’ jury.

This conclusion related to research into the safety of medicines and in the situation where strict safeguards for confidentiality exist, says University of Otago researcher Dr Lianne Parkin.

“The citizens’ jury unanimously concluded that researchers should be permitted to use medical information without consent so long as the researchers follow the ethical guidelines and relevant laws which already exist in New Zealand to protect patient privacy” says Dr Parkin.

The jury also recommended that the public should be kept informed about the research that is being undertaken on medicines’ safety. Also, there should be a commitment to ensuring that the results of such work are fed back to clinicians and the public.

Jurors reported becoming more comfortable about the use of medical information without consent as the jury hearing progressed. They attributed this to being more informed and being able to deliberate with others.

The paper: Public good, personal privacy: a citizens’ deliberation about using medical information for pharmacological research, by Dr Lianne Parkin and Professor Charlotte Paul, both of the Department of Preventive and Social Medicine Otago University Medical School, has been published in the UK in the Journal of Epidemiology and Community Health. The work was undertaken as part of a joint initiative funded by the Health Research Council and Medsafe, Ministry of Health.

Editor’s notes:

What is a citizens’ jury?
A citizens’ jury brings together a panel of non-experts to be informed and to debate a matter of public significance. A random sample of Dunedin people met over the course of three days. They heard evidence from experts and questioned them and then deliberated. A steering group guided the process.

The steering group included representatives from the Office of the Health and Disability Commissioner, the Office of the Privacy Commissioner (as an independent observer), the Ministry of Health and a researcher on medicine safety.

What was the issue the citizens’ jury debated?
The issue the jury debated was: should researchers contracted by a public body be permitted to use medical information about identifiable people, without their consent, (a) for routine analysis to identify potential adverse effects of medicines that are newly introduced into New Zealand, and

(b) for the investigation of emerging concerns about adverse effects of medicines currently being used by New Zealanders?
If so, under what circumstances and with what safeguards? If not, why not?