News

Public Engagement Experts Developing Consensus Statement for Using Data in Research

Published on: 9th June 2017

On 27 April 2017 in Manchester, The Farr Institute’s public engagement teams collaborated to run a consensus workshop on public engagement relating to data linkage and sharing for health research. The workshop followed immediately after the Informatics for Health 2017 conference and was designed to inform strategy for best practice in public engagement.

Twenty-five participants were invited to attend the workshop, identified from literature searches, networks and recommendations. Attendees represented a range of experience including research into public attitudes around data use and linkage. Participants came from across the UK (including representatives from the four Farr Institute Centres), Australia, Canada, Finland and the Netherlands. There were also representatives from each of The Farr Institute’s four Public Panels.

Ever-increasing amounts of data are being collected. Combined with advances in computer power and data analytics, this is opening up new possibilities for research and the social contract that underlies the use of health data. Public engagement is all the more important as we enter this new era of health research.

A consensus statement is a document, developed and agreed upon by representatives of multiple perspectives, that provides guidance for practice in specific areas while also clarifying underlying values and aims. The workshop harnessed the knowledge and experience of a group of international experts to produce a consensus statement on good practice in public engagement around data-linkage and sharing in research.

The workshop examined key issues and questions including:

  • What do we understand public engagement to mean and can we provide clarity of purpose?
  • What are the core values underpinning any agreed approach to public engagement?
  • What, if anything, is special about public engagement relating to data linkage/sharing for health research?
  • How can we define and shape good practice in public engagement in data use/linkage?
  • What can we learn from previous experiences (both positive and negative)?
  • What are the success criteria and guidance for practice we should recommend?
  • How should public engagement in data use/linkage be evaluated?

The Farr Institute’s public engagement leads are now writing up a report of the outcomes of the meeting and are currently drafting the consensus statement. The consensus statement will develop through iterative drafts with input from all the workshop participants as well as through consultation with The Farr Institute’s Public Panels. It is anticipated that final consensus statement will be launched at an event in the autumn, published on The Farr Institute website and in a high impact international journal.

To be notified on the publication of the consensus statement, please join our mailing list.

For more information on The Farr Institute’s public engagement work, please visit the public engagement section.

The Farr Institute supports Understanding Patient Data. To find out more about the initiative visit www.understandingpatientdata.org.uk


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