Back in February we posted a couple of articles about information sharing with a request for people to let us know their views on use of their information. Joined Up Leeds was a two-week conversation where people had the chance to discuss how their health information could and should be shared, the benefits of sharing, concerns they have, and how information could be used for the benefit of people in Leeds.
Firstly a big thank you to all those who took part and encouraged others to do so too. A total of 1,474 people got involved. The Joined Up Leeds Facebook page received 111 likes, post promotions reached 8,084 people, and 492 tweets made 1,102,113 impressions.
We now have the results to share.
In summary, nearly 90% of people believe that anonymised health and care information should be used to help plan local services, while 74% agree that it should be used to keep people healthy and to help find cures for diseases.
More information follows.
What happens to information about me?
We identified three themes in the conversations about what happens to information. The first – Who sees information about me? – describes how people assume information is shared more widely than is currently the case. While there were a few concerns, people supported better information sharing as they believed this would improve the quality of care and services they receive.
The second theme – Who owns information about me? – is about many different types of information, including financial information, employment records, purchases, internet browsing history, and health records. These conversations show variety in how people think about information ownership. Overall, people are happy to take greater ownership of information about themselves. They believe it would reduce inaccuracies in their records and that greater involvement in and ownership of information would help ensure they get more appropriate services and care.
The third theme – Missed opportunities – describes conversations about how greater sharing of, and more action upon, information collected could improve services, particularly for those with long-term health conditions and those who are vulnerable or elderly.
Who do I trust with information about me?
Respondents were asked how much they trust different organisations with information about them. The results show that GP practices are highly trusted, more so than the NHS in general. Both are trusted more than banks or building societies, the council and universities. All these are trusted more than insurance companies, and in turn, all of these are trusted more than health apps, store loyalty cards, Amazon, Apple and Google. Facebook is trusted less than all other organisations listed.
People who considered themselves to have a disability trusted universities and insurance companies with information about them less than people without a disability. Younger people had greater trust in banks, insurance companies, store loyalty cards, health apps and online organisations than older people did.
Conversations about trust formed four different themes. The first – Personal medical records – reflected participants’ mixed views about who should be able to access their individual medical records. They agree, however, that because people differ in the extent to which they would be willing to share information there should be a degree of personal choice. There are concerns about non-medical professionals accessing this information, and most people do not want employers to have access. Younger participants are more accepting of wider access.
The second theme – Control – included conversations about people wanting to know who can see information about them and to be able to retain some control over who has access to it. People do not like the idea of their personal information being sold to other organisations, especially if it means they will receive sales calls.
The third theme – Security – reflects people’s concerns about the security of systems used to store information about them.
The fourth theme – Trust-benefit ratio – reflects how the amount of personal benefit someone receives from sharing their information influences the extent to which they are prepared to trust an organisation with their information
What might the future look like?
Respondents were asked what they would be prepared to allow information from their health and social care records that didn’t identify them to be used for. The results showed clear support for this information to be used, with 93% supporting it being used for one or more reasons.
- 89% believed it should be used to plan the best services for people in Leeds;
- 74% believed it should be used to help people stay healthy;
- 74% believed it should be used to help find cures for diseases;
- 65% believed it should be available for general research for the public good;
- 18% believed it should be available for commercial research.
There were no differences based on age, disability and where people live (inner or outer Leeds). Despite this support, respondents had concerns about their information being used. The most common concerns are that information might be sold to private companies (71%) and it might not be stored securely (61%).
There was interest in greater use of technology in the future of healthcare, although older respondents were less interested in using apps and mobile internet than younger respondents. There was support for the way in which health information was shared in the four case studies, and while respondents of all ages agreed, support was greater in the younger age groups (91%) than the older groups (76%).
We identified four different conversations about what information sharing might be like in the future.
The first – Greater sharing of personal records – is about participants wanted wider sharing of their records. They believe that this would lead to better more seamless healthcare, with fewer mistakes and omissions and one that would be more cost-effective.
The second – Citizen-owned, IT-enabled information – is about a vision of a future in which citizens own their own information and grant access to professionals whose services they want.
The third – Open data – is about citizens being bemused about why this would be useful and their pragmatic approach to accepting it being unlikely, rather than impossible, that they would be identified.
The fourth – Resources where they are needed – reflects beliefs that better use of information means that resources can become more flexible and can move to areas where they are needed most. This could shorten waiting times for healthcare, and by anticipating people’s needs, services could become proactive rather than reactive.
The full list of conclusions and recommendations are available in the main report.
- People trust the NHS, and in particular their GP practice, with their information more than other organisations because they believe the NHS has better motives for wanting access to it.
- Most people are willing for information about them to be used to improve health and wellbeing and to plan services. This includes granting wider access to personal medical records, publishing information on the number of people with different conditions and situations (aggregated data) and releasing datasets that contain anonymous information about them (open data).
- There is less support for releasing information for commercial research purposes as people are concerned that organisations using information in this way are solely motivated by increasing their profits. They are also concerned that if private organisations were to have access to this information they would use it to gain a competitive advantage, which would adversely affect the NHS.
- Younger people are more likely to allow wider access to their individual healthcare records for the purpose of direct care and they are less concerned over information about them being sold.
- People thought that individuals should not be readily identifiable from information released about them. They do not want to be contacted or marketed to as a consequence of their information being released. This is of particular concern for people with disabilities.
- People want to feel in control of who has access to their information, particularly their individual medical records. They need to trust people who see information about them.
- People are puzzled by the idea of open data and what it could be used for. They are concerned about sensationalised, inaccurate or misleading stories that could be reported by the media.
- People need to understand how access to their information can help us learn more about, treat, cure and prevent illness and increase quality of life. They need real examples of how aggregated data and open data has or could make this happen.
- There is interest in using technology to send and access health information. Benefits include gaining personalised health recommendations and guidance in managing long-term conditions.
- Giving people greater control over their own healthcare records is likely to change the clinician/patient relationship, particularly around trust and people taking greater responsibility for their own health.
The following recommendations were made.
- Let people know – in easy-to-understand terms – what information collected from them is being used for. This should not be hidden in terms and conditions.
- Help people to understand the value of information about them by developing clear examples of how it has been used to improve services. The Health and Social Care Information Centre could play an important role in this.
- When information is requested from people, for example on application forms, surveys or equality monitoring forms, it should be clear why it is being asked and what it will be used for.
- Reassure people about the ethical principles that guide professionals on confidentiality and protect their privacy.
- It should be possible for people to opt out of information sharing, although they need to understand the implications for themselves and others of doing so.
- Produce an audit trail, open to anyone, showing the information that was used to reach policy and planning decisions.
Leeds has a vision to be the best city for health and wellbeing and a global leader for health innovation. Using and sharing information supports this ambition and any changes that need to be made to help achieve it.
More information about the kinds of changes that are being considered in Leeds are available here. This site is aimed at anyone who would like to be involved and have their say about local health and care services.