Majority of patients in North East and North Cumbria willing to share their data with healthcare providers, say research

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

The majority of people in the North East and North Cumbria said they are happy to share their patient information with NHS organisations, according to the results of two studies commissioned by the pioneering Great North Care Record.

The Great North Care Record Public Engagement Report and an online YouGov poll showed that those surveyed were in favour of sharing their medical information with healthcare providers – and not surprisingly, a majority of people also wanted a say on how their healthcare data is handled and used.

The Great North Care Record is developing an integrated shared care record for 3.6million people living in North East and North Cumbria in a bid to improve treatment and save lives.
The project, a collaboration between the £20m government funded Connected Health Cities programme and local NHS organisations, is a new and more efficient way of sharing care information electronically across the region between authorised health and care practitioners with the patient’s permission.

It means potentially life-saving key information on patients’ health, such as diagnoses, medication, hospital admissions and treatments, can be shared securely in hospital emergency departments, out of hours and ambulance services almost instantaneously to help patients receive the care they need quicker.

The Great North Care Record is a digital health project which is currently accessed over 85,000 times a month by healthcare professionals, including acute trusts, hospital A&E departments, out of hours providers, together with mental health, ambulance and 111 services. 100% of GP surgeries (over 400) in the North East and North Cumbria, have now signed up to share ‘read-only’ GP patient information under the Great North Care Record.

In future, other care providers including local authorities, social care providers and researchers will be able to access the same important information – with the individual’s permission. The team behind the Great North Care Record is developing online and offline option so people can set their own sharing preferences with healthcare planners, researchers and other organisations involved in their care.

Highlights from both reports

Findings from the two reports show that the majority of people surveyed said they are happy to share their information with NHS organisations, but did say they want to control their own privacy preferences and decide who they share their healthcare information with. Just over half (53%) of those surveyed in the YouGov poll said they would support sharing their healthcare information with university researchers in the interests of science.

Great North Care Record Public Engagement Report

The report commissioned by Connected Health Cities who manages the Great North Care Record was produced in association with Teesside University and Healthwatch Darlington and all 13 local Healthwatch organisations across the region. Newcastle University and Teesside University researchers analysed all the information recorded at the focus groups.

The report was based on over 20 patient focus group-style workshops where the team spoke to over 300 people over a three-month period. Participants identified five key values they would expect to be upheld when information about them is used for their care, planning or research. The foundation of these values was an expectation of respect:

  • 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 the information held about them, both to see what is said and to add further 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.

You Gov poll on behalf of Teesside University

In a separate online study conducted by YouGov 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 could 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 share their identifiable data on a secure database with approved researchers.
  • 46% of people said they would share their information with medical companies if it meant improvements to the health and care products.

Professor Joe McDonald, Consultant Psychiatrist at Northumberland, Tyne and Wear NHS Foundation Trust and Director at Connected Health Cities North East and North Cumbria, said: “We want to listen to and respect the views of people living in our region. What came across loud and clear in this research is that it’s individual, and we, as the NHS respect the wishes of our patients and the information we record and share about them.

“There are two ways the Great North Care Record is looking at sharing healthcare information. First, within the health and care system so that paramedics know more about you when you’re admitted to hospital. This is already happening across the region and is improving patient care and safety.

“But there is also a very rich set of information held in healthcare IT systems. This information is not easily accessible to researchers. By analysing this information in new ways, we can make the North East and North Cumbria not only the best place to receive care as your healthcare information follows you around the system, but with your permission we can use the information that’s collected and share it with researchers to make the region one of the best places to do medical research.

“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.”

Professor Madeline Murtagh, co-author of the Patient Engagement Report and Professor of Sociology and Bioethics at Newcastle University, said: “Public engagement in the North East and North Cumbria is a cornerstone of the success of the Great North Care Record. It is clear from our research that citizens want and need to be involved in data sharing if such sharing is to be supported by the majority of the population. Citizens expressed clear values and expectations about sharing their data, and fundamental to these values was an expectation of respect.”

Professor Denis Martin, Professor of Rehabilitation at Teesside University, said: “The YouGov poll of over 800 local residents tested the idea of data sharing in May 2018. The results showed that the overwhelming majority of people (94%) said they would share their information within the NHS if they needed medical treatment. Three quarters said they would share their information with social care providers, while just over half (53%) said they would share their data with approved university researchers and just under half (46%) said they would to share information with medical companies if it meant improvements to products and services available.

“These figures show that the majority of those surveyed were in favour of data sharing but 86% also believe it is important for them to control their own privacy settings so they can choose who they share information with.”

Michelle Thompson BEM, Chief Executive Officer of Healthwatch Darlington said: “Local Healthwatch organisations are independent consumer champions for health and social care services in our respective local areas. We ensure that our citizen’s voices are heard at the heart of decision making to help influence, shape and design local services.

“We are really pleased that Connected Health Cities and Teesside and Newcastle Universities embraced the opportunity to work closely with all 13 local Healthwatch organisations in the North East and North Cumbria.  The Connected Health Cities team not only ensured they correctly captured the views of the regional population, they listened to them too and that is evident in the five key values reported.”

Read the reports in full on the Great North Care Record website.

To find out more about the Great North Care Record, visit www.greatnorthcarerecord.org.uk or follow them on Twitter @GreatNorthCare or Facebook @GreatNorthCareRecord.