Researching the public’s views on sharing their medical information

Participants from one of the Gateshead focus groups

Participants from one of the Gateshead focus groups

 

At the Great North Care Record we are passionate that we put people in control about how their health and care information is shared within the health and care system, and outside, with researchers.

That is why we have commissioned two independent pieces of research to explore people’s attitude to sharing their health and care information.

Read the reports in full

Workshops

YouGov poll

Workshops

These focus group-style sessions provided more in-depth analysis and explored sharing information within the NHS, other public sector organisations, healthcare planners and researchers.

There were over 20 sessions held during a three-month period in Autumn 2016 and over 300 people from across the region took part. The sessions were facilitated by Healthwatch and Teesside University on behalf of Connected Health Cities.

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 study online 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 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.

*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.

Read the report in full.