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Starting with the Public
Below is a news article from Joined Up Leeds, something we are very proud to be collaborating on. For anyone considering undertaking Person Held Record (PHR), whether developing or looking to implement, this should be of real use.
Joined Up Leeds
Background
Leeds has a vision to be the best city for health and wellbeing and to be a global leader for health innovation. Using and sharing information about citizens underpins this ambition yet there is often hesitancy around sharing information, even when this may lead to improved health outcomes and reduced health inequalities. Involving citizens in the discussion from the beginning is crucial.
Joined Up Leeds was developed as a two week period of conversations taking place across the city. Citizens discussed how their health and wellbeing data could and should be shared, the benefits of sharing, the concerns they have, and how information could be used for the benefit of people in Leeds. This report summarises the initial main findings.
Joined Up Leeds researches the desires for a Person Held Record
Leeds is also a leading city for data, with many different initiatives driving the way health and care information can be used for the benefits of people. The development of Person Held Record forms part of the city’s strategic direction, enabling people to better manage and plan their health and wellbeing.
The leaders in the city were keen to find out whether Leeds residents want a Person Held Record. Leeds Informatics Board, in conjunction with Ripple, commissioned Brainbox Research, an independent research agency based in Leeds, to encourage people in the city to talk about having a Personal Health Record. Questions were asked around how they would use it and how it might affect their health. Four themes evolved from the engagement with the eight focus groups:
- Making it work for me – how a Person Held Record could encourage individuals to actively engage with it.
- I control my information – individuals want to decide what to share and who to share it with.
- How to reassure me – discussed concerns and extent to which the record would provide unique value or replicate services that are already in existence.
- Potential impact – to increase the amount of control individuals feel over their own health and wellbeing.
The full report is available here to DOWNLOAD
What Next
The results will be shared nationally and will be used by Ripple, a clinically led technical team hosted by Leeds City Council, to build an open source Person Held Record demonstrator that will be further tested by a small group of people in the city. The Person Held Record demonstrator will initially be designed to include the “core information” that people highlighted, for example, NHS number, allergies, blood group.
Ripple Foundation
Ripple Foundation is also helping the adoption of an open integrated digital care record platform that is built for the future. Open source refers to something that can be modified and shared because its design is publicly accessible, therefore the work done in Leeds can be adopted and then adapted for other areas across the country and beyond. An integrated digital care platform allows health and social care workers involved in a person’s care access to the most up to date care information about that individual, no matter which digital system their organisation uses. The flexible nature of the open approach and technology can meet a wide range of other related needs, from small health and care departments up to regional care records.
Ripple Foundation is committed to working with others and wants to want to change health and social care for the better with the inclusive approach to learning, sharing outcomes and experience with a blend of open source technologies. If you would like to learn more about Joined Up Leeds and the work that Ripple Foundation is undertaking, please email on info@ripple.foundation or tweet on @RippleOSI
