Future of Social Care – Person-centred data for a person-centred future

• Written by: Alex Stobart — Mydex CIC — Scotland Director
• Published: 28th October 2021

Alex Stobart reflects on the need to shift from organisation-centred data to person-centred data.

In its proposal for a National Care Service, Scottish Government has said that it wants to redesign ‘the system around the individual’. But what exactly does this mean?

Just now, people who interact with many different services experience a lot of friction, effort, risk, and cost trying to get support.

Somebody’s rheumatologist can’t swap notes with their neurologist because they are in different organisational boundaries. That same citizen’s care at home staff don’t give them a new medication because they missed the message from their daughter. Every time somebody moves to a new area or their situation changes, they have to repeatedly tell the same stories. It’s inefficient and frustrating, with stress and hassle built into the system.

It’s because the information is stored and controlled by the organisations that use it.

We give and receive information to and from organisations, they provide services for us and, perhaps after asking our permission, they occasionally share it between one another to make life easier for us.

We call this organisation-centred data.

Government’s current solution is to create a new ‘nationally-consistent, integrated and accessible electronic social care and health record’. This would take years to build, be hugely expensive (with inevitable cost overruns), and generate a new, unwieldy bureaucracy – while excluding citizen participation.

There is a better alternative, available to use now: to provide every citizen involved in care with their own personal data store, where they can accumulate records to create a rich picture of their situation. They bring this data to services, building privacy-protecting citizen control into how the system works.

Citizens give permission to organisations to connect to their PDS, sending and receiving information to serve the citizen, all without the citizen needing to find, send, or explain anything.

This is person-centred data: the core design principles we must embed into the NCS.

We agree the future of health and social care needs to be redesigned around the individual. But person-centred services won’t work without person-centred data. What could embedding these principles mean for people’s experience of health and social care?

The Digital Health and Social Care Innovation Centre (DHI) undertook 52 co-design projects across 41 health and social care organisations, including over 3,500 citizens and 1,000 care providers.

Citizens told them five simple wants, which person-centred data would deliver:

1. “I want to tell my story once”

We would eradicate form-filling with person-centred data. You’d just give organisations access to what they need at the tap of a touch-screen.

2. “I want meaningful dialogue with professionals”

Relationships with professionals would be easier by giving them whatever level of access to your personal information you’d like. You would never again have to tell a GP in one area what your consultant told you in another, or worry about whether the staff in Mum’s new nursing home have everything from the care plan put together with her care at home team.

3. “I want to access and understand my data & guidance”

Everything in one place means no rifling through drawers – in fact, it means information tailored to the citizen’s particular needs. Organised, secure and under the individual’s control.

4. “I want to do things on my own terms”

Human rights extend to the digital world. Person-centred data means everything is placed, accessed, edited, or used on your terms.

5. “I want to unlock or unblock the care I need”

The friction, effort, risk, and cost created by organisation-centred data would dissolve.

The right data gets to the right place at the right time, via the person it is about. Work we have done with DHI and Scottish Government as well as Macmillan Cancer Support shows PDS will mean services truly wrap-around people, telling them when they’re entitled to support tailored to their particular needs. All without having to lift a finger, let alone advocate for help.

A National Care Service is a once-for-Scotland opportunity to dramatically improve how citizens, carers, and frontline staff alike gain and provide support.

Scottish Government’s third vision in its Covid Recovery Strategy is to “accelerate inclusive person-centred public services”. Rethinking the personal data infrastructure that provides this care is essential if this vision is to be realised. Citizens should be provided with tools to control the data that system runs on. That’s what we’ll be writing in response to the National Care Service consultation – we hope you agree.

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