Health November 22, 2018
Putting patients back in control of their health records

By Daniel Male - Accountable Care Journal

John Rayner, Regional Director, HIMSS Analytics for Europe and Latin America, discusses the digital future for patient records with Accountable Care Journal.

Building on a 35-year career in the NHS as a registered nurse, clinical services manager and as a Chief Information Officer, John Rayner is an authoritative voice on the digital agenda for health.

John is well-placed to have strong views on patient data and he is determined to encourage the adoption of patient-owned health data. It’s an uncertain area but one that is vital for the increased efficiency of both the NHS and private providers today.

“By giving patients access to their own care records so they can contribute to them, we can create a more holistic picture of what’s happening with that particular individual,” he says. “As a result, patients can be more informed either prior to, or following, an encounter with a healthcare professional. ” 

The idea is that individuals should be more aware of their own health than anyone else and are therefore best placed to manage their records. However, while this may increase efficiency, it puts the reliability of the health record at risk. As the patient becomes more accountable for managing their own record, there is an increased risk that the consistency and quality of the record is placed in jeopardy.

Implementing patient-centred records

John has been at HIMSS for four years now, initially heading up professional development by raising the profile of CIOs as strategic leaders, before moving on to refocus on analytics, specifically in relation to clinical health. As HIMSS sits between providers of healthcare and industry, it is well positioned as a platform to influence and support both providers and developers of systems.

John Rayner

So how do we start? Any steps towards giving patients access and control over their data begins with digitisation. John distinguishes between two types of digital medical record, the standard electronic patient record which ‘takes a snapshot’ view of the patient, seen within hospital trusts, and the personal health record which is something the patient can contribute to themselves.

One of the issues with the adoption of the personal health record is the hosting of data. Regardless of the debates surrounding ownership which is a legal matter, there is the practicality of how the data is recorded and where it is physically stored. We often see in other European countries that governments or health ministries provide the hosting opportunity,” says John. So what does this mean for health outcomes?

While the theory of giving patients more accountability for their own medical and health records is empowering for individuals and has the potential to support integrated systems of care, there is limited proof available to suggest patient health outcomes are improved. “I think there is some evidence to suggest that it improves knowledge and education, and it potentially removes and reduces the impact the patient has on medical practitioners,” says John. However, the impact on outcomes is still open to speculation.

What are the risks?

The primary concern when introducing new electronic systems in health is the security risk which is especially prevalent when it comes to managing patient data. In the aftermath to the WannaCry cyberattack on the NHS, this is not surprising. However, “the risks are relatively low in comparison to the gains,” says John. If the system is “managed securely and properly then there’s everything to gain and very little risk. ” 

If anything, an overemphasis on data security is a hindrance to progress in John’s eyes. “If we were a little more open-minded then things would move much quicker. It's very easy for certain clinical groups and professional groups to scaremonger where you know generally the risks are very low. "

With advances in consumer technology, there have been vast leaps in the quantity and quality of health data which can be gathered at the individual level. The most cutting-edge wearables, such as the Apple Watch, can now even take an ECG and companies in the industry are gathering momentum. However, John warns that while this is great as a supplement, some aspects of the personal health record must remain for clinicians. Despite regulation, it is clear that there is still too much scope for erroneous data to be gathered and mistakes to be made.

Systematic Change

Often seen as disruptive, digital innovations can have positive impacts on systems if they are implemented and managed effectively. All new services have an impact on existing services when they are introduced. But what does this mean for regulation? And how do these new services interface with existing systems of care?

Addressing both of these issues requires transparency, open API’s and a solid legal framework, suggests John. But these are not the only requirements. Patients and healthcare professionals need to be educated to ensure new technologies are used correctly and records are not corrupted.

 “The biggest problem in the NHS is trying to start from where we are now and if you were to start again, you wouldn't design it quite like this. ” 

So where now?

“Everybody recognises that integrated healthcare is the is the gold standard,” reflects John. “If we can acknowledge that evidence, we've got to ask ourselves why in the U.K. do we regulate individual providers and not whole systems? Why do we fund individual providers and not whole systems? And why do we commission individual providers and not whole systems? If we were to change those three things then we would force integration of care to be a much more prominent feature. ”

It is clear that integration, digitisation and technology all form corners of the new direction of patient centred care. But whether this means patients control their own records is not so clear. What is obvious, however, is that John is keen to see patients seated at the centre of their own health universe and that adopting new technologies to boost accountability is the way to do it.

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