My purpose in writing this article is to encourage people to think about whether civic data trusts offer a unique opportunity to change the way health and social care is delivered.
The UK government’s independent review of Artificial Intelligence in 2017 recommended that data trusts should be used as a way to “share data in a fair, safe and equitable way”. In its May 2018 report, the House of Commons’ Science and Technology Committee found that the government could do more to “realise some of the great value” tied up in restricted public data sets, such as those held by the NHS, and hold them in data trusts. The Open Data Institute (ODI) recently found that there is huge demand for data trusts from organization’s around the world, and that data trusts could be a useful solution to data sharing where there are conflicting interests between parties. The Centre for Data Ethics is understood to be working on data trusts in commercial settings and pilot projects exploring different data trust models are expected.
My proposition is that development of data trusts with health and social care purposes could enable new ways of delivering services and redefine the interactions between Citizens and Statutory Services.
In their recent paper, Increasing access to data while retaining trust?, Dr Rachel Free and Ella Wells suggest that currently, the term “data trust” is not well-defined. They interpret that a data trust should facilitate data sharing between organisations that hold data and organisations that want to use data to develop AI. The data trust would ensure that the ethical, legal, and GDPR considerations are met. A data trust has trustees who are responsible for deciding when and with whom to share data, as well as what data is shared, and whether such sharing benefit the public and the organisations using the data. It is envisaged that the creation of data trusts will allow the public greater access to and control over the use of their data, which in turn will increase public trust in data-collecting and holding organisations.
In applying how this might work for health and social care, I take the concept one step further by proposing Civic Data Trusts as a vehicle for individual Citizens to improve their health and well-being, as well as being a prevention and self-care hub to enable Citizens to manage their own care. The following example scopes out some possibilities.
A Civic Data Trust is created as a membership organisation effectively owned by its members with the purpose of operating for public good. The Civic Data Trust adopts technology which enables members to create MyAccount functionality and sign up to services they wish to receive. The Trust could offer verification of documents and a document store so that Account Holders can be automatically prompted if they become entitled to any programs, benefits, schemes or resources. The Citizen’s Account could be used by all care organisation’s involved in their care to keep a longitudinal care record with an overall and risk predictor to guide the recommended NEXT STEPS in response to the data collected. With appropriate consent this data can be used to track the overall pattern of needs and profile the successful interventions across care services. Citizens could receive a monthly health and well-being report which analyses all data reported to their Account and maps emerging trends and issues.
This would be particularly helpful where a client is discharged from a statutory service. They could import their personal data into the MyAccount function so that they are able to continue monitoring their issues and arrange how their care is delivered.
This introduces the concept of a community care system to help Citizens case manage their care. The benefit of a longitudinal record aggregating and mapping their care needs over time will ensure that the AI can anticipate opportunities to intervene early where action is required.
Such a system would enable ‘Transition” of ‘identified’ citizens across acute, primary and social care services where necessary.
A key issue in empowering Citizens with technology tools is how their data will dynamically interact with them whilst not completely invading their privacy. Trying to balance the use of personal data without making the Citizen feel exposed will be difficult. The level of intimate data which will be collected on clients is invasive. Personal details such as their bodily functioning and mental state can make people feel vulnerable. However, it is critical that statutory agencies find ways of engaging with Citizens and particularly getting them to adopt the technology necessary to manage demand.
Local Authorities are ideally placed to sponsor the creation of local Civic Data Trusts. They could really benefit by such an organisation enabling citizens to manage their privacy and facilitating escalation to services and transfer of data where needed. This would reassure Citizens that the Council will act when they need to but reassure them that they need only expose data to statutory services when there is a clear benefit flagged in doing so. The increasing use of telecare and telehealth is resulting in masses of data however statutory services do not have the resources to scrutinize it. Whilst Citizens have access to a multitude of apps and devices, there are no tools to aggregate and make sense of their data. Development of a Civic Data Trust to host a community care system would assist Citizens to self-manage their care and use the data they have collected in an insightful way.
For example, there are many factors associated with greater rates of fall injuries in seniors. Some are less personal, but others are intimate. Factors include previous medical diagnoses (e.g. cerebrovascular accidents/transient ischemic attacks), arthritis, fractures, dementia, diabetes, vitamin D deficiency, anemia, arrhythmias, neuropathy), impaired vision/hearing, recent hospital discharge, higher body mass index, poor sleep/obstructive sleep apnea, and urinary incontinence. Alcohol use is also a predictor for fall risk.
Falls represent a huge factor in the health and wellbeing of elderly people. The provision of Gait sensing technology could have a big impact on preventing falls however it’s easy to see that a Citizen might not wish to have all their data exposed to anyone but themselves. Holding the data outside of the statutory care record but being able to transfer it when requested by the Citizen changes the likelihood of engagement with the Citizen. Enabling them to know how their behaviour impacts on their symptoms will help them to manage and stabilise their conditions.
For a long time, Councils have been trying to impact in a meaningful way on the prevention agenda. Civic Data Trusts might be the vehicle to finally address how to empower these strategies and build community resilience. Currently we are locked into reactive cycles of crisis before services can be accessed. Adoption of technology to empower Citizens to look after themselves and maximise their self-servicing options seems a good idea.