Majority of patients in NENC willing to share their data with healthcare providers, say research

Great North Care Record reveals results of two studies into patient data sharing

Connected Health Cities North East and North Cumbria has published two reports today exploring the attitudes of people in the region to sharing medical information recorded in the NHS.

The independently produced reports were commissioned to provide a better understanding of the public’s attitude towards sharing information recorded about them in the NHS.

Both reports asked people how far they would be willing to share their information – just within the healthcare system to support their own care, with social care providers, with service planners and researchers.

Focus groups

During a three-month period in Autumn 2016, over 20 focus group-style workshops were held across the region. There were over 300 people from each part of the North East and North Cumbria. The sessions were facilitated by Healthwatch and Teesside University on behalf of Connected Health Cities. The Healthwatch network organised each of the focus groups and invited local people to attend to give their views on information sharing.

The results of the sessions were analysed by researchers at Teesside University and identified five values which were:

  • Reciprocity: Participants recognised the benefits of sharing data for improving health and social care for themselves and others in the community. They would like to have access to data held about them, both to see what is said and to add additional information like organ donor preferences.
  • Fairness: Participants expected communication and decision making about data sharing (including information about what data they are happy to share) to be accessible to all regardless of class, education and literacy, disability, ethnicity or capacity. They expected an even higher level of care for data concerning potentially sensitive or stigmatising issues like mental health, reproductive health and sexuality.
  • Agency: Participants said they want a say in how data about them is used, by whom and for what purposes. Control of information use and access was not only an individual issue. They expect the public to be involved in the oversight and governance of information sharing and the Great North Care Record.
  • Privacy: Participants expected their privacy to be maintained, except where they have specifically agreed to share personal information. They recognise privacy as central to preservation of an individual’s sense of self (identity) and that it should not be violated. They wanted to know that data about them is secure and that their choices and preferences are upheld.
  • Transparency and Trust: Participants expected to be informed about how data about them is or may be used. They wanted to be able to access further information on Great North Care Record and data sharing as and when they needed it. They expected institutions handling data about them to act in a trustworthy manner. They said healthcare institutions are the most trusted. Research institutions were felt to require more information to give clarity and lead to greater trust. Commercial and for-profit organisations the least trusted.

Read the report in full.

YouGov poll

In a separate online YouGov poll conducted on behalf of Teesside University, respondents were asked to read various statements and watch a video about the Great North Care Record before asking if they agreed or disagreed with a statement. This study involved over 800 people living the North East and North Cumbria*, researchers found:

  • After reading about the NHS being able to share healthcare records with emergency departments, 94% of people surveyed said they would allow their medical information to be shared within the NHS.
  • After reading about people being able to control their privacy settings when sharing their healthcare records, 86% of people said it is important to be able to control their own privacy settings, so they can choose who they share information with.
  • After reading about how social services can have access to healthcare records, 75% of people stated they would allow their information to be shared with social care providers if they were using their services.
  • After seeing a video about the Great North Care Record, 53% of people surveyed said they would be happy to share their identifiable data on a secure database with approved researchers.
  • 46% of people said they would be happy to share their information with medical companies if it meant improvements to the health and care products available.

Read the results in full.

*All figures, unless otherwise stated, are from YouGov Plc.  Total sample size was 824 adults in the North East, Copeland, Allerdale, Eden and Carlisle. Fieldwork was undertaken between 22nd – 29th May 2018.  The survey was carried out online.

Connected Health Cities North East and North Cumbria has responded to the insights in these two reports.

Professor Joe McDonald, Director at Connected Health Cities North East and North Cumbria said: “We are using the findings from these reports to help us develop a way of capturing the information sharing preferences of the people living in our region. We will make it possible for individuals to say whether they would like to be contacted by researchers to participate in studies, or for their existing information to be accessed and analysed.

“The benefits of sharing patient information are enormous and will undoubtedly improve treatments and save lives of patients across the North East and North Cumbria. However, we recognise that this is also a sensitive area and it’s just as important that individuals have full knowledge of what data is held about them, who shares it and how it is used and that they have control over it.

“We want to build trust so that the whole community is working towards a shared goal. We will develop an eco-system of collaboration and innovation across the health, care and academia. We will do this whilst protecting and respecting the individual’s choice about their healthcare information.”

Read more about the Connected Health Cities North East and North Cumbria response to the two reports.

For more information about Great North Care Record visit their website, or follow them on Twitter @GreatNorthCare or Facebook @GreatNorthCareRecord