Social care data: the gap between word and deed

In the third of our Opinions on data and the National Care Service, Alex Stobart writes about outstanding data gaps and challenges.

When it comes to ‘building back better’ from Covid and making real advances in the provision of health and social care, Scotland has a problem. For the last few years, it has said all the right things. But it isn’t doing them.

The Scottish Government ‘s Covid Recovery Strategy (this link will take you away from our website) says it wants to tackle inequality and disadvantage, build ‘firm foundations’ for ‘more resilient communities, businesses, economy and society, make progress towards a wellbeing economy and “accelerate inclusive person-centred public services”.

Its proposal for a National Care Service says it wants to redesign ‘the system around the individual’.

But detailed, practical initiatives to make these happen are not forthcoming.

As one participant pointed out to a Stakeholder Recovery Round Table (this link will take you away from our website) chaired by John Swinney MSP in May 2021:

“One of the big challenges is to close the gap between policy and practice. There is no shortage of aspirational policy but have we taken the opportunity to consolidate some of these excellent ideas? Are we driven by existing boundaries of service delivery rather than concentrating on what individuals need? There are opportunities to find efficiencies by having a person-centred approach.”

One reason for lack of progress may be the nature of the political process. Politicians get many of their ‘wins’ from announcements that get favourable coverage; actual implementation involves blood, sweat and tears that’s easier left to others.

But there are bigger barriers too. As the Round Table participant noted, it’s hard to join dots across and outside silos rather than within them – and if we really want NHS and care services in Scotland to build inclusive person centred services we need person centred data infrastructure that enables this rather than blocking it.

Take health and social care. It is extremely data dependent. We need data to diagnose problems, to build treatments and programmes, and to organise their efficient delivery through care pathways and referrals. Day in, day out front-line service providers wrestle with data logistics challenges: getting the right (reliable, accurate) data to the right people at the right time. Without this, things can grind to a halt. Time and precious resources are diverted to filling the data gap and mistakes are made, resulting in even more wasted time and resources.

And that’s just looking at it from service providers’ point of view. Patients and their friends, families and carers are also managing lots of data about conditions and treatments, care plans, appointments and general life management as they deal with their situation.

But the data systems we currently use are anything but inclusive or person-centric. Quite the opposite. They are organisation centric, focused internally on the needs of the organisation (or parts of it), organised in silos, with one part not talking to another.

This is a by-product of data management’s history. The way data is collected and used in our society and economy today was never designed to address the issues we now face. Its organisation-centric nature reflects its origins in helping multiple separate organisations achieve their goals, not to create system-wide efficiencies or be inclusive of individuals (never mind person-centred and human rights based).

This is the bigger, deeper challenge we now face: building enabling infrastructure that’s fit for a new set of purposes. The Scottish Government’s March 2021 paper An Ethical Digital Nation (this link will take you away from our website) says:

“We must design and deliver products and services that use data and digital technologies in transparent, honest and inclusive ways and build trust by ensuring that we protect personal privacy and empower people to be informed users and to control their personal information.”

What it now needs to do is use a new layer of infrastructure that enables this: that is person-centric by design because is makes individuals the point where data is aggregated about them; that empowers them to share this data with service providers as and when needed; that keeps them in control of the sharing of this data at all times.

The principles behind this approach are long-established. When citizens pass their driving tests, the DVLA provides them with a driving licence that enables them to instantly verify the fact that they are entitled to drive. They can carry this information around with them and present it to whoever needs it, whenever they need it. With it, they can also prove other things about themselves such as their name, date of birth, address.

In a digital age, why shouldn’t citizens be able to do the same with their health and care information NHS such as their CHI number, blood type, diagnosis, referrals etc. – any and all information that is relevant to their health and care – so that they can take this information with them from service provider to service provider in a secure, digital form, sharing it as and when needs be, including with friends, family and their own personal carers.

The Scottish Government has accepted the principles behind this approach with its embrace of the Scottish Attribute Provider Service (SAPS) that would allow citizens to do the same with data needed to access and use public services. Now all the Scottish Government has to do is turn words into deeds.  The Scottish Approach to Service Design provides a clear pathway for achieving this.

This opinion is part of the ALLIANCE’s Future of Social Care series. You can find other entries in the series here.

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