Understanding patients’ views on data sharing

Participants from one of the Gateshead focus groups

Participants from one of the Gateshead focus groups

As part of the Great North Care Record project – Connected Health Cities in the North East and North Cumbria is developing an integrated shared care record for 3.6 million local people.

The first phase of the Great North Care Record project is now complete and all acute trusts, out of hours’ providers, mental health, ambulance and 111 services in the region can access a read-only version of a patient’s GP record in emergency and out of hours’ care settings – with the patient’s permission.

Use of the Great North Care Record is planned to be extended to other care providers including local authorities and in other hospital settings so in the future everyone in the North East and North Cumbria involved in a patient’s care can see the same important information.
The next phase of the project is looking at how we can develop online and offline tools so that citizens can set their own information sharing preferences. This will allow citizens to decide whether they share their information with healthcare planners, or researchers or other organisations involved in their care.

The North East and North Cumbria is internationally recognised for medical research with a number of world-leading universities.  The aim of this aspect of the project is to make the North East and North Cumbria one of the best places in the world to do health research.

We can’t do this without taking great care in how we talk to patients and develop a way for them to control their privacy settings.

In May 2017 we carried out three preliminary focus groups working in partnership with Healthwatch Darlington and Teesside University. There were around 10 participants in each group from a range of backgrounds.

The aim of these sessions was:

  • To understand patients’ views on managing their own privacy preferences.
  • Provide information on how their records are currently shared and the issues this has at the point of care and for planning and research.
  • Get more understanding about patients’ tolerance to information sharing to understand where they draw the line and what safeguards they require.

We showed patients a form that could allow them to record their privacy preferences to help with their understanding and get feedback.
We also listened to the feedback we received from these preliminary focus groups and improved the content for our next set of citizen engagement and focus groups which took place in Autumn 2017.

These 20 engagement sessions, included 12 independently facilitated focus groups, used the same format to understand patients’ views and their current knowledge of data sharing practice in the NHS.

The remaining sessions were facilitated by Connected Health Cities and NHS Digital staff. We were also supported by Healthwatch and held between one to three sessions in each local authority area. All sessions were well attended with around 15-40 participants at each session.

A good cross section of the public was targeted by each of the local Healthwatch teams including some harder to reach groups such as people with learning disabilities and those with sight or hearing loss. We wanted to get an understanding of what issues people have in accessing health and care services.

The focus groups were facilitated by a Teesside University qualitative researcher who is collating the results. In addition, a YouGov poll of 1000 local residents will take place in the coming weeks to test the ideas of data sharing with a wider population.  Teesside University will publish an independent evaluation of all the findings in Spring 2018.

Public engagement is so much more than a tick box exercise for the Connected Health Cities team. As the programme evolves, we will continue to test our ideas with the public and use the insight to create digital healthcare solutions which meet their needs.

The full results of our public workshops and survey will be published in spring 2018.