Does social care data matter?

When the Health & Social Care Information Centre (HSCIC) changed its name to ‘NHS Digital’, it was hard not to feel like social care was being further exiled from the national care curriculum.

At a time when the “Five Year Forward View” (5YFV) was promising radical changes in the delivery of care services, through an integrated approach supported by technology and the effective use of data, here was the national provider of information, data and IT systems removing the words ‘social care’ from their name. But what is in a name? A lot, apparently. Fast forward a couple of years, and it feels that social care remains as isolated as ever.

 

Dr Bradley Kirby Health Informatics, iCareHealth

Well, that was how it felt at the first round table event hosted by the National Care Forum (NCF) – “Shaping the Contribution of Social Care Data”. The event pulled together a wealth of experience and leadership from multiple stakeholders in social care delivery (see below) to consider what could be achieved from the effective utilisation of social care data. The focus was on interoperability, data standards in social care and the sharing of data across health and social care to fill in the gaps in care pathways.

One common story prevailed: everyone acknowledges the need to share data to improve care, but no one really knows how, everyone is too afraid to do it, and there is no clear guidance or ownership driving the interoperability agenda forward in social care.

This is no surprise, there are 211 Clinical Commissioning Groups (CCG’s) for hospital care, emergency care, community care and mental health; 152 Local Authorities for social care, and the NHS for primary and specialist care. None of these areas are yet aligned and everyone is looking to others to make decisions.

At the start of the event I presented my top 3 challenges that face system suppliers to social care today. What became clear to me by the end of the day was that these challenges are valid whether you’re a system supplier, care provider, regulator or a national body:

  • Data. There is no consensus in social care on what data needs to be shared with whom, and no clear guidance or mandate about what data standards to follow, or how to follow them.
  • Unique Identifier. There is no single unique identifier used across social care. The NHS Number is not widely adopted in social care (and why would it be? Social care is not the NHS), and this makes it difficult to identify individuals and share their social care data with the health service.
  • Information Governance. The landscape is unclear, with often conflicting guidance, and care providers are often having to decide between compliance with outdated data protection laws and compromising patient safety by not sharing data.

These challenges, amongst others, were all well debated over the course of the day, and the bad news is that there are still no clear answers, and issues of ownership and accountability remain.

The good news is that forums like these are bringing the right people together and as an industry we are beginning to see outlines of what needs to be done to make our industry successful.

For example, one item that stood out for me was the realisation that we need to lobby Parliament to get the NHS Number incorporated for use in social care. That is one practical step that we can take towards solving the second problem, but it’s a big task and requires a collaborative approach. There is plenty that we can do as individuals in the meantime to improve the way social care is delivered and help our industry move towards the interoperability goals set out in the 5YFV.

In my previous life before iCareHealth, I completed a PhD while working at the Information Services Division (ISD) in Scotland (the Scottish equivalent of NHS Digital). My PhD investigated the accuracy, validity and utility of routinely acquired whole population electronic health data, using data linkage techniques, to support a robust mechanism for post-market drug surveillance and pharmacoepidemiology. In other words, can we use information captured at the point of care (in my case prescribing data and hospital episode data) to improve clinical practice and policy?

To save you reading my thesis, the short answer is yes, you can. It can be done in health care, and it can be done in social care too. Social care data matters. However, to utilise data effectively in social care, the three challenges above need to be solved.

Stay tuned for a deeper analysis of what each of these challenges are and some ways that we can overcome them.

Stakeholders: Skills for Care, Local Government Association, Care Quality Commission (CQC), Registered Nursing Home Association (RNHA), NHS England, NHS Digital, Boots Pharmacy, iCareHealth, KareInn, EvaluCom Consulting, and a wide range of not for profit social care providers including Norse Care, WCS Care, Look Ahead Housing, Care & Support, The Fremantle Trust, Elizabeth Finn Homes.

bradley.kirby@icarehealth.co.uk