Understanding patients’ views on data sharing

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

The first phase of the project is complete and now all acute trusts, out of hours’ providers, mental health, ambulance and 111 services in the region can access a read-only version of patients’ records – with the patient’s permission.  Use of the care record is planned to be extended to other care providers including local authorities and further healthcare providers – so everyone involved in a patient’s direct care can access, update and share information electronically.

The next phase of the project is looking at how we can gain permission from patients for their medical information to be used for healthcare planning and research purposes.

The region is internationally recognised for medical research with a number of leading universities.  The aim of this aspect of the project is to make the North East and North Cumbria the best place in the world to do 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 pilot 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 the 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 prototype web-based tool for them to record their privacy preferences to help with their understanding and get feedback.

We have listened to the feedback we received from the pilots and have improved the content for the next set of patient workshops – due to take place between October and December this year across the region.  We are hosting around 20 further workshops in each of the local authority areas in our region. We are keen to get as much detailed information from patients to help us shape the privacy preference tool for the Great North Care Record.

We aim to have a much better understanding of where people’s tolerance is to information sharing we want to continue the conversation with as many people as possible this year.

Once the remaining engagement sessions have taken place, the next steps include a YouGov poll of 2,000 local residents to get views from more people..

These engagement sessions will provide us with a firm evidence base to create our privacy management tool. We’re firmly committed to listening to patients in our region and developing a privacy permission tool which places them fully in control of how their data is used, with appropriate safeguards.  We want everyone in the region to become a ‘data donor’ – willingly giving clinicians and researchers working in our region, access to consent rich data which will benefit us all.