This year the government announced that £4.2 billion will be spent on bringing the NHS into the digital age – paper free, kite-marked apps, digital records, click and collect prescriptions, free Wi-Fi in hospitals and citizen access to personal records which we can control and edit. The reality is far removed from this ambition, and the track record is littered with failed national programmes, such as Care.Data.
Today a huge amount of our health data is not held in formal clinical or social care records, but in our wearable IT and the many other care services that we access. Digital delivery is about finding new ways for that information to be brought together, to provide better and more efficient care services, without compromising confidentiality, privacy, choice or clinical risk.
I have just completed the second of a two part research report for Eduserv’s Executive Briefing Programme, ‘Health and social care integration (part II): The potential of digital’, with contributors from across the sectors. The report considers the digital components needed for integration.
Data and records management is central to this: I believe that the future is an ‘organic and distributed’ care data record, owned by the service user but with effective controls and safeguards to protect clinical and other professional activity. Defining ‘Care as a Platform’ (CaaP) rather than a single service, will enable different professional services to work together, sharing systems and information to support individual service users and patients.
There are some key messages in our research:
- Prioritising open systems, data and platforms. Software suppliers should commit to principles of systems sharing and be expected to demonstrate how data can move between applications, with open APIs never locking data into proprietary application environments.
- The concept of an organic, distributed and ‘virtual’ care record should be adopted. A core clinical record, shared across health and social care should be just one component.
- User consent systems and security protocols are needed to protect data and privacy in a distributed network of data, with the service user determining the connections between different datasets to reflect needs and preferences.
- IT infrastructure, standards and technologies should be shared for reuse across local care agencies. For too long, organisational silos and the proprietary interests of suppliers have resulted in a myriad of standards and interoperability challenges.
- Identity management must be harmonised, such as using the NHS number across all care services, whilst avoiding trying to create a single central database of all care data and records.
- Information governance and handling should be consistent and coordinated, with the necessary risk management and controls in place to protect and support those accessing care services. This will also make it easier for infrastructure to be merged and common standards to be adopted.
Digital literacy of citizens and professionals alike is also required for this to work, coupled with trust in digital methods and a new approach to digital and IT leadership. There needs to be an equality between all care services – not a domination of national and health priorities – and acceptance of small, mobile and transferable technologies alongside ‘big IT’. Digital strategies should lead IT strategies, and outdated legacy IT which holds back modernisation and integration must be retired and replaced with new, open and shareable solutions.
None of this is easy and it is made harder by the fragmentation of care policy, leadership, resources and technology in the sector. Success will come from remodelling care services for digital delivery, not just joining up and modernising IT strategy. This does need to be based on national digital standards, common technology components and policies, but implemented locally to reflect individual preferences and needs. Without this basis, the government’s ambitions for digital health care will, not for the first time, founder.
Eduserv’s Executive Briefing Programme research into health and social care is now available to download:
Part II, The potential of digital – just released and discussed in this blog post.
Part I, Confronting the challenges, published in the summer, examines the context for integration across the UK – understanding the blockers and the opportunities. Most of these are not about IT, but are to do with culture, politics, fragmented budgets and competing silos of a multiplicity of care agencies. There remains a pressing need for fundamental change, particularly in designing and delivering place-based and user-centred care.
Up next: Health and social care webinar: Data ownership and consent to share data in care services, 13 December 2016, 10am.