Backpack - Person-owned Data Store
Project impact
Set a precedent for person-owned data store concepts which are now in development in DHI Exchange
Person-centred vision at the heart of development
Identification of key principles and the co-creation of four overarching concepts to shape the development of the Personal Data Store (PDS)
The Personal Data Store (PDS), or "Backpack," aimed to enhance service access and enable integrated, person-centred care. In partnership with Mydex CIC, NHS Grampian, and Moray Social Health and Care Partnership, DHI worked with MS patients and professionals to improve personal information management for better service experiences.
The Personal Data Store (PDS), herein referred to as the ‘Backpack’, was proposed as an opportunity to improve the experience of accessing services and enable integrated and person-centred care. The project explored the potential solution developed by our project partners: Mydex CIC - a Community Interest Company that specialises in personal data management - together with NHS Grampian and Moray Social Health and Care Partnership.
The overall aims of the research project were to explore how people living with Multiple Sclerosis (MS) would like to manage their personal information in order to improve the experience of accessing services and to understand the potential of the Backpack to support health and care professionals to deliver more integrated and person-centred care.
To meet these aims, DHI led a participatory design process with people living with MS and health and social care professionals. People living with MS were identified as highly knowledgeable co-design participants, due to the complex and progressive nature of the condition, requiring wide-ranging interactions with statutory services.
Summary
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Partners
Analysis of the conversations, maps and prototypes led to a wealth of insight about the current experience and challenges of service users and providers. A set of principles were identified to shape the development of the PDS and co-created four overarching, but complementary, concepts to inform development.
Concept 1: Mapping Interactions The Backpack should map the care interactions around the person, providing high-level information to make visible the complex network of professionals supporting the person. This could be shown as a circle of care or on a timeline.
Concept 2: Health Story A 'Health Story' would provide a space within the Backpack for the person to share their story in their own words, using video or written narrative, supported by key dates and facts, avoiding emotionally draining and time-consuming repetition for the person.
Concept 3: Smart Form Filling The Backpack could fill up with information as the person completes forms and automatically draws in data from existing sources. The Backpack could intelligently compare data against eligibility criteria, highlighting any appropriate services they may be entitled to access and verifying eligibility for services (e.g. Blue Badge for parking).
Concept 4: Tools for the Specialist MS Nurse With permission from the Backpack owner, the system would notify the MS nurse of any changes in their condition or circumstances recorded by the person or their health and care professionals enabling the nurse to better prioritise people who may need their support and email patients via the Backpack.
Impact & value
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Both people living with MS and health and care professionals were very positive about the concept of the Backpack, and saw how it could be used to improve communication and make services more person-centred.
We also learned some general qualities people living with MS value from the people and services that support them. Services should be orientated around their personal goals and needs, and should seek to offer convenience to make everyday life easier. People valued services and places that felt safe and welcoming; and professionals who showed understanding about the challenges of living with MS, and were knowledgeable about the people and services that could help.
Progress to date
Staff related to the project
The DHI continues to develop and test the concepts outlined by building and developing prototypes in different contexts in our DHI Exchange programme of work.
Next steps
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