To Share or Not to Share?

NHSX says that England’s health systems should have a shared care record in place by this time next year.

By Claire Robinson
16th October 2020

NHSX says that England’s health systems should have a shared care record in place by this time next year.

In the year 2020, when the great plague known as COVID was ravaging the earth, a pair of twins, Joey and Joelly, decided to get some fresh air by walking in their local wood beside the twin ponds of the great UK healthcare data lake.

Joey and Joelly were both sensible young adults who understood the great value of their health data so wanted it to be protected from danger and only shared wisely.

Joey decided to turn left and walk by the pond called ‘TOO LITTLE data shared’ whilst Joelly turned right and wandered around the pond ‘TOO MUCH data shared’.

Let’s accompany them on their walk and see what they learned:

Joey discovered that if his care providers are not permitted to share ENOUGH health data then:

• His care providers would be operating ‘blind’ with insufficient information to support their clinical decision making.
• That emerging technologies that rely on big data (e.g., AI and machine learning) could be held back.
• That the researchers operating in healthcare would find it more difficult to conduct their studies efficiently and safely.
• That his care could not be tailored and personalised to him as tightly as he’d like.

Joelly learned that are equally many risks when TOO MUCH health data is being shared. She learned that:

• Her privacy and personal safety could be violated.
• That the trust and reputation of her care providers and associated healthcare communities could be damaged.
• That her valuable health care data could be captured by third parties, such as the large technology companies without her knowledge or consent. She worried that it might be used for purposes other than her direct care.

US Healthcare providers have called this the ‘Goldilocks Dilemma’ — where there are risks involved in sharing either TOO LITTLE or TOO MUCH health data.  Similarly, in the UK, health policy has increasingly seemed to be geared towards advancing two seemingly conflicting goals:

1. More stringent privacy and data protection.
2. Wider data interoperability and data sharing.

This leads us to question whether it is possible to advance data sharing and interoperability while protecting privacy?

Speaking in late September, NHS X boss Matthew Gould, stated that we should have a shared care record in place by September next year.  The previous attempt – at national level –ended prematurely when the Care.data scheme was closed following concerns over a lack of patient consent for data-sharing.

During a hearing by the public accounts committee, Mr Gould said that the LCHRE programme has now been ‘evolved to ensure every part of the country has a record in place that will allow patient data to safely and appropriately flow between care partners within health and social care.’

NHSX said it wanted a ‘basic’ level of record-sharing in place within the next year. The records should enable the sharing of data set out in the Professional Record Standard Body’s core information standard, which includes things like diagnoses, appointments, referrals and general information. The records should include at least GPs and NHS Trusts, but it also wants local systems to include social care providers if possible.

At Pando, we have always maintained that safe, secure and lawful data sharing according to the seventh Caldicott principle benefits both the patient, their healthcare provider and the broader spectrum of support providers such as social care and hospice workers, relevant charities and clergy. This is even more relevant during the pandemic when healthcare providers are facing new challenges daily and speed of communication can save lives.

“The duty to share information can be as important as the duty to protect patient confidentiality. Health and social care professionals should have the confidence to share information in the best interests of their patients within the framework set out by these principles. They should be supported by the policies of their employers, regulators and professional bodies.”   Caldicott Principle 7.

The NHSX target of sharing all patient records within twelve months is hugely ambitious and very possibly won’t be met but the focus is welcome. If delivered efficiently, this project should drive far more efficient communication and provide more joined up care at a time when it is needed the most.