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Manchester citizens assemble to help influence national public policy on the use of health information in research.

Posted on February 1, 2016

citizens jury debate health data Members of the public discuss the use of health data in research over three dats

Over the course of three days (14-16 & 21-23 January) 36 volunteers will participate in an in-depth and democratic process which is designed to understand more about the public’s views regarding the use of patient records for purposes like research, health service planning and management.

Led by researchers from The University of Manchester this significant subject will for the first time be put to a public jury, challenging the participants to consider the balance between individual data privacy and the wider benefits associated with data-intensive research. The juries will allow the public’s voice regarding the use of personal health data in research to be heard.

Throughout the ‘hearing’ members of the “citizens’ jury” will hear testimonies from five expert witnesses including a GP, the Information Commissioner’s Office and the Director of the Department for Health’s £20m Connected Health Cities, a programme to improve the health of the North.

Following this, the jury (selected to represent a balanced cross-section of society), will be charged with collectively answering questions such as “should individuals be allowed to control access to health records even when it interferes with the wider public good?”

Facilitated by Kyle Bozentko, a director of the Jefferson Center in the USA, and Amanda Hunn from the Health Research Authority, this University of Manchester project is funded by the MRC-led Health e-Research Centre and the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre, and supported by the Information Commissioner’s Office.

The overall findings and opinions of the two juries will be presented to a high-profile audience in March 2016 which will include senior representatives from the Department for Health, the Health and Social Care Information Centre, NHS England and the Information Commissioner’s Office.

Dr Malcolm Oswald from The University of Manchester said: “The citizens’ juries will allow us to understand more about the way that patients believe their health information should be used.

“It’s a different way of doing democracy – participants will be asked to consider some important questions and their answers could impact on national decisions regarding the use of personal health data in research.

“I am looking forward to seeing the process in action, and hearing the participants’ conclusions.”

Ends

Notes for editors:

The Health eResearch Centre (HeRC) is delivering large scale, population wide health research by harnessing the power of information and technology.

Led by The University of Manchester and bringing together research excellence across the North of England (in partnership with the universities of Lancaster, Liverpool and York) the Health eResearch Centre is increasing the pace of progress in the UK’s health sector by turning under-used health information into new knowledge.

The Health eResearch Centre – People | Data | Methods

For more information please visit our website www.herc.ac.uk #datasaveslives

Enquiries:

Stephen Melia

Communications and Public Engagement Officer

Tel: 0161 306 7876

Mobile: 07757 310213

Email: stephen.melia@manchester.ac.uk