Citizens’ Juries indicate public support for health data sharing but clear communication is essential

Group CHC Hub

Posted on the 6th March 2017

  • Clear communication of health benefits encourage the public to support sharing their health data
  • Patients are happy to share information with commercial organisations but only if it leads to improving patient care

The re-use of patient information to improve health services requires clear communication of the benefits to gain public approval, according to the results of two in-depth citizens’ juries.

The results also highlighted that the sharing of information with commercial organisations would be acceptable to the public, providing improvement of services and treatments for patients was the primary reason for the data transfer.

The public ‘trials’, conducted for Connected Health Cities (CHC) by The University of Manchester and Citizens’ Juries cic, involved public representatives spending four days immersed in the subject of medical records.

Facilitated by two impartial representatives, the 36 jury members were specifically chosen from 700 applicants to represent Northern England’s population.  During the process they heard a variety of expert witnesses argue the reasons both for and against the use of data on a number of planned as well as hypothetical CHC projects.  The jury members then voted on whether the re-use of data for each project was acceptable in their opinion.

One of the hypothetical projects involved the use of de-identified patient data by a large software company.  The data would be used to develop artificial intelligence that could help better diagnose sepsis, a life-threatening condition.  The number of jurors supporting this potential use rose from 22% at the start of the jury process to 83% afterwards, showing a significant improvement in its approval rating.

Similarly, another potential project involved sharing de-identified patient data with a large pharmaceutical company.  The proposed aim of the research would be to understand more about the effectiveness of different medications leading to better treatments for patients.  Acceptance of this data-use rose from 50% at the outset to 75% by the end of the process.

In both cases improving health services was the overarching reason for the juries to share data.  Where jurors had reservations, these were primarily down to the commercial gains being seen to supersede the patient benefit.  Whether or not an organisation was seen as trustworthy played an important role in the thinking of both juries.

Dr Mary Tully, Director of Public Engagement said:  “Across both juries the results clearly show that trustworthiness, transparency and communication are absolutely key when it comes to the re-use of patient data for purposes beyond direct care.

“It is also fair to say that this is a complex issue and as you might expect the findings are nuanced.   However, they indicate that where information is de-identified and the benefits are clearly articulated then a majority of people would support the use of data for health service research and development.

“Many of the jurors came with pre-existing ideas about the way the NHS is run and this came out in their reasons for voting.  What we can clearly state about the juries is that the more a person understands about health data sharing, the more likely they are to approve of it.”

Derek Threlfall, a member of the Manchester jury said: “I really do think there is a responsibility to use the data by the NHS and I think there should be an aspect of them looking further into gathering more information for the outcomes of better healthcare, better drugs and medicines”

The CHC programme, delivered on behalf of the Northern Health Science Alliance, launched in September 2016 at the NHS Expo.  The programme will safely and securely combine population data with technology to address chronic disease burdens and early mortality in the city regions of North England.

ENDS

Notes to editors

For further information please contact Stephen Melia, Communications Lead, Connected Health Cities, Tel: 07557 310 213, Email: stephen.melia@manchester.ac.uk

 

Find out more about the CHC Citizens Juries here

This video features interviews with the CHC citizens’ jury participants.

Read more posts...