Sandra Auld of Healthcare Public Affairs advocates for citizen-held data and data integration.
A significant body of opinion including independent review[i], task force[ii] reports[iii] and government committees[iv] have all recommended that integration of data should be progressed. The opportunity to do this, presented by the National Care Service Consultation should be grasped, keeping people at the centre of the decision-making, involved and included, shaping the developments. There are few aspects of health and care that would not benefit from this integration. The pace of change needs to be accelerated and this requires strong leadership from our professional, industrial and political colleagues to implement solutions.
With the caveat of appropriate governance, user safety and attention to high standards, data integration can drive improvement towards happier healthier lives and contribute to better utilisation of finite resources and is essential to Scotland being viewed by investors as open for business. Access to and use of data is fundamental to achieving this and is continually raised in conversations, irrespective of the makeup of stakeholder groups.
A starting point for the ‘how’ is for people to be custodians of their own citizen-held data. In NHS Scotland almost unknowingly we have been piloting this premise successfully for many years with the patient-held maternity record which is now available in a mobile app.
Derek Feeley said in his recent Review of Adult Social Care
We were told consistently that Scotland needs to shift its attitude towards technology and data sharing to improve people’s experience of social care… Technology is not a replacement for support provided by another person but it can play a much bigger role in improving the lives of people who use social care services and supports. It can also help with people’s ownership of their care and support, particularly when people “own” their own data or information that is about them and share it with the people who support them…….”
There is much to be said regarding the proposed role of Integration Joint Boards that will I am sure be expertly covered elsewhere and I am hopeful that whatever shape they take will include Service User, Carer and Third Sector representatives as full members including voting responsibilities as without those rights, there is not true partnership. Suffice to say that Integration authorities throughout the country are working with insufficient access to the data they need to support safe, effective and timely decision-making for the people they serve. The move towards person-held records is a logical progression and this can be supported and further developed. The work of the Digital Health & Care Institute[v] continues to support innovation and developments such as in NHS Highland where predictive care is being implemented using AI with the positive ramifications of integrated supported living being much wider than initially anticipated[vi]
Prescribing pressures which continue to place huge stresses on health and care systems are compounded by short-term siloed budgeting which irresistibly pushes towards short-term cost savings rather than an emphasis on longer term quality and outcomes. Pharmaceutical companies welcome transparent collaborative working and further moves towards outcomes-based-healthcare would be to everyone’s benefit, while ensuring the best new medicines are appropriately available for people in Scotland. Data integration would fundamentally improve this ability and again would improve investment attractiveness.
The prioritisation of national data capture and technology spread is essential, with accountability linked to defined actions and ambitious implementation timelines, rather than the piecemeal inequitable application that is our historical experience. Go on, be brave, trust us citizens.
Prof Andrew Morris
[iv] Report on supply and demand for medicines 20200630 HSS052020R6.pdf
Health & Sport Committee