Person-centric care means integrated data
The health and care system is under unprecedented pressure. It faces large backlogs, growing waiting lists, an aging population, the aftermath of Covid, and high expectations from today’s digital savvy population. To cope, it needs to be streamlined with a focus on person-centric care and improved patient experiences.
It’s a significant challenge, demanding a re-think of many services which were historically designed from the perspective of the clinician or the hospital. Instead, these services need to be reconstructed based on the ideal journey of a patient or citizen through our complex health and care system. This journey should be integrated and efficient – not complex and siloed as it is today.
The introduction of integrated care systems across the UK provides a great opportunity to step back, do things differently and make person-centric care a reality. An important part of this picture is ensuring that care teams have easy access to a person’s medical and care information, so they can make informed and effective decisions.
And therein lies the problem.
As citizens, our medical and healthcare data is held in multiple databases across many different organisations. Due to the very sensitive nature of this data, these organisations are justifiably wary of sharing it freely with others, particularly if there’s no accountability or audit of what happens to this data once it leaves the organisation.
Data fabrics can help engender trust
A data fabric is a streamlined way to share data widely whilst retaining control. It provides a lightweight, decentralised network for secure data sharing and is a great alternative to sending sensitive data into a centralised data lake and hoping it’s used appropriately. Data fabrics also mean that organisations don’t have to build complex systems and APIs to link to every health and care organisation in their area. Using data fabrics, health and care organisations can:
Publish just the relevant patient data and only to a private consortium of organisations
Rather than all shared data being open and accessible to all organisations within a database, data fabrics allow health and care providers to allocate which information is published and to whom.
For example, a made-up organisation called the New Hospital Trust could choose to share information about medication and appointments for patients who have been discharged into care, without including other data such as radiography results, ECG data, or notes from consultant conversations. It could also limit disclosure based on specific criteria, for example, opting not to publish information about patients specifically discharged into a frailty care plan.
Use smart contracts to encode which people and roles can access parts of a patient's dataset
By enabling organisations to specify exactly who can access the data they publish, data fabrics allow another layer of control to be wrapped around patient data.
The New Hospital Trust for example could ensure that registered pharmacists on the network can access data regarding patients' medication history, but none of their mental health information. GPs on the other hand, could be given access to both of those parts of the patient's care record.
Make use of scalable and flexible ways to add additional pathways and services
As every health and care organisation has their own node on the data fabric network, each organisation can update their own part of the network, without impacting other IT infrastructures. This allows for quick and easy-to-scale adjustments.
For example, once satisfied that the data fabric works for frailty patients discharged into care, the New Hospital Trust could update its smart contracts and opt to publish data for discharged diabetic patients. With little disruption or administrative effort, permitted organisations could then make use of this data to improve and tailor outpatient care.
Be assured of a full audit of all uses of patient data, often via a distributed ledger
Similar to blockchain, a distributed ledger gives every member of the data fabric access to a detailed ledger of everything that’s ever been done within the network. This creates complete accountability and oversight by outlining exactly who did what and when.
Putting this into practice, the New Hospital Trust might opt to check when healthcare professionals from other organisations have viewed its patients' data. To stay up to date, the Trust can also see when other organisations upload additional data to the network.
Every organisation in a health and care data fabric ecosystem retains autonomy and decision-making capability over its data. And if an organisation agrees to share additional data with other trusted providers, it can do so by simply modifying its smart contracts, without the costs and workloads other data sharing interfaces and infrastructure require.
Data fabrics give patients' control, too
Thinking beyond this, and with the person-centric paradigm in mind, data fabrics can be extended to give citizens more visibility and control over their own health and care data. There are various models for how health and care providers can help citizens engage with their data, and one example is by connecting people to the data fabric via a patient portal. Amongst other things, this would allow citizens to:
- see data relating to their health and wellbeing that’s being shared on the network.
- indicate where they think that the data might be incorrect or out of date.
- update their consent for healthcare professionals to access specific aspects of their sensitive data.
- provide rich sources of health and wellbeing data, such as information from remote monitoring devices like blood pressure monitors and even wearable fitness devices, as well as other wellbeing assessments.
This is just the start of the possibilities. Used effectively, data fabrics provide an opportunity to improve outcomes, support automation and reduce the cost of care.