Information, “efficiency” and the Care Reform Bill – a missed opportunity
Nick Kempe looks at the portion of the Care Reform (Scotland) Bill and discusses the missed opportunity to reform how information is gathered in the care sector and how it could be used to improve care.
At present staff who work in frontline health and care services, in whatever capacity, are estimated to spend between a third and a half of their time recording, duplicating, sharing or trying to obtain information about the people they are working with. This is time that could be spent supporting people directly.
The case for reform is simple. Relationships, as the Scottish Government has acknowledged with the Promise, are central to good health and care provision. Instead of enabling staff to devote time to relationship-based care, however, social workers and care workers are forced into a dystopian “information” world. It’s even been known for care staff to be disciplined for having a cup of tea with someone instead of performing and recording personal care “tasks”.
Information, of course, underpins all relationship-based care. Both parties need to know about each other for a relationship to work – among other things this is how trust is built - but care and support is much more effective when that information is in people’s heads. Parents, for example, will know lots about their child but only in exceptional circumstances will their ability to care for them or do so with others be improved by this information being recorded rather than being shared informally on a “need to know” basis.
The recording of information and access to written records only becomes important when care is dis-continuous, where different people are providing care at different times or in different places. There is increasing appreciation of this fact among those working in the NHS. For example many GPs are now arguing that “continuity of care” is a far more efficient way of responding to need and demand than management systems which attempt to prioritise and direct care. In short, if a GP knows someone they can usually assess their medical and other needs and work out how best to respond more quickly with better outcomes all round. They also need to record less.
Our starting point for information therefore should be how can we design a care system that is focussed on the delivery of relationship based care. We could then reduce the amount of information which is recorded and address the practical issues to ensure that what information needs to be recorded can be done so easily and is accessible to those who need it. Our current system is completely incompatible with that and has been driven by the needs of managers and commercial interests rather than frontline staff and the people they care for.
The National Care Service (Scotland) Bill included a section on Health and Care Information which was transferred to the Care Reform (Scotland) Bill when the Scottish Government was forced to abandon its proposals for centralising care services under Ministerial control. The information clauses were, following the recommendations of the Independent Review of Adult Social Care, drafted in the hope of addressing data gaps and improving efficiency but without any analysis of what was going wrong. They contained two main provisions, the first to create by regulations “a scheme that allows information to be shared”, the second to create an Information Standard “setting out how certain information will be processed”.
At the final reading of the Care Reform (Scotland) Bill last week the Scottish Government accepted an additional information clause on from Jackie Baillie MSP, which was supported by all the political parties, mandating Scottish Ministers to facilitate digital care records. That potentially represents a step forward as many care records, particularly those by front-line care staff, are completed by hand and are only available to fellow carers able to decipher the hand-writing. It still doesn’t resolve, however, two fundamental issues.
First, it needs to be easy for staff to access and enter digital care records. Ten-minute logins and fumbling on a phone to fill in boxes will make matters worse, not better. Ironically, the issues were well illustrated during the voting on the Care Reform Bill when, for almost every amendment, a number of MSPs were unable to access the electronic voting system and had to request their votes be registered manually!
Second, unless those digital records interconnect, information sharing will be little better than it is at present. The fundamental issue here is about the interoperability of IT systems in health and social care. The problem, that has never been properly analysed, is that it is NOT in the commercial interests of IT providers to develop IT systems that communicate with each other: to do so risks losing business. Hence most developers sell proprietary systems that make it very difficult to share information with other proprietary systems but allow them to sell “fixes”. As a consequence, the multitude of digital systems operating across health and social care in Scotland could only be made to link up at enormous cost.
This situation has created a nightmare for staff who are unable to access many of the IT systems which store information on the people they are working with and often have to login separately to the digital systems where they are allowed access. None of the talk about improved information sharing has prevented different parts of the health and care sector, public, voluntary and private, from carrying on procuring dozens of incompatible IT systems. Every week different parts of the public sector award their own “bespoke” contracts, a recent example being the £27,852,000 NHS Education for Scotland has awarded to CGI of Canada to develop a “Digital Front Door” – the point about front doors from the insider perspective is they are designed to keep others out!
Brian Whittle, from the Tories, presented a potential solution to this at the Third Stage Reading. His amendment would have required digital records to comply with “a technology-agnostic interoperable solution”. That could have paved the way for personal data stores, which in our view are the only way to solve the technological, managerial and legal impasses to ensuring information about a person can be shared, with their agreement, with those who need it. Interoperability of different systems will only become possible when all the information about a person is stored in the same place. Maree Todd, in almost her last act as social care minister before the was moved on in the government reshuffle, rejected Brian Whittle’s amendment, claiming its meaning was unclear, and was supported by the Greens so it fell.
Instead of addressing the real barriers to information sharing, the Scottish Government still appears intent on punishing health and social care staff who fail to do so. The clause in the Bill on care records, which allows Ministers to “create sanctions (civil or criminal) for those who fail to comply with the regulations’ requirements”, was passed. If Personal Data Stores were created, this clause would become completely redundant. The information staff entered into care records would all be in one place and those who needed to access it could do so. There would be no need for any staff to share any written information as that would happen automatically when the person concerned agreed to this.
Voting down interoperability undermined the Scottish Government’s professed intentions, announced this week, to improve efficiency across public services. As Robin McAlpine wrote on Wednesday “if you want two examples of how to waste money, NHS procurement and virtually every IT system the public sector introduces would be good places to start”.