Taz Cheema, a Business Analyst for The Brain Tumour Charity, discusses how the patient community she works with have led the development of a data-sharing initiative.

Patient engagement has become the blockbuster drug of the 21st century.

There has been a fundamental shift in the NHS as it has transitioned to a patient-centred care model, putting patients at the centre of everything they do.

Through embracing a shared decision-making ethos, patients are becoming more involved in their own treatment and care.

Building trust

However, there is still a lack of public understanding around the uses of health data. Trust is paramount in reducing public anxiety. Some evidence suggests that when individuals have access to, and use, health data about them, they feel a greater sense of trust in how their data can be used for purposes wider than their own care.

We have seen a number of hiccups around the use of patient data in the NHS. We still experience the rippling effects of the failed care.data to this day.

To reverse this, health data needs to be put back into the hands of patients. This will enable a change in culture and increase patients’ acceptance and trust in data sharing. And who better to foster this trust than those closest to patient communities – the voluntary and charitable sector.

As Health Secretary Matt Hancock said in his speech at this year’s NHS Expo, “we know that patients will give their consent if they hear from people they trust about the difference that their data could make.”

A patient-led databank

To better understand its community’s attitudes towards data sharing, last year The Brain Tumour Charity conducted a survey across 270 patients. It found that 97% of those living with a brain tumour would be happy to share their data, not only to accelerate the development of new treatments and diagnostics, but also to help inform other patients in a similar position.

Armed with evidence of an altruistic desire among patients to share data, The Charity have initiated the development of a patient-led databank, BRIAN (Brain tumouR Information & Analysis Network).

To eliminate the reliance on ‘Dr Google’, BRIAN will be a one-stop shop for brain tumour patients to learn from treatment and care experiences of others who have been affected.

BRIAN will bring together data on treatments, care, quality of life and service provision to create a centralised hub of information. Using common digital technologies, those affected by a brain tumour will be able to contribute to and access anonymised reports and use these to make comparisons.

BRIAN will bring together the patient’s clinical record with patient-reported information. This will help identify gaps in clinical care and provide researchers with easy access to data to help accelerate progress towards a cure for brain tumours. 

Wider data changes needed

Whilst charity-led data-sharing initiatives such as BRIAN have the potential to transform how patients are treated, a data-driven revolution of our health system requires a two-pronged attack. Public awareness and acceptability isn’t the only Achilles heel to harnessing the power of data – clinical data in our system is complex and messy.  

Under GDPR every patient has the legal right to request a copy of the information that the NHS holds about them, free of charge. Subject Access Requests to primary and secondary care providers, NHS Digital and Public Health England have brought to life the lack of standardisation in clinical data coding and collection. Not only do requests get returned in paper form as stacks of illegible doctors’ notes, but electronic records show missing hospital visits or even recorded visits that never actually took place.

The current datasets – originally designed for largely administrative purposes – simply do not reflect clinical working practices and the complexities of multi-professional patient care.

With a lack of standardisation and limits to the quality of data our health service holds, how can we analyse the data to make national comparisons of performance and service provision?

The lack of basic interoperability between hospitals, GPs and ambulance services is costing lives.

There is definite room for improvement. Not only by the injection of £200 million into the NHS by Matt Hancock, but by collaborating with those closest to patient communities to enable appropriately-governed sharing of data.

Giving something back

Initiatives like BRIAN can provide innovative ways to present clinical data in a legible format, which is also much more accessible to patients, helping them make more informed decisions, whilst standardising the way in which data is collected.

However such a data registry should also feedback its patient-enriched dataset to our health service to support clinical decision-making and benchmark service provision.

BRIAN is a testament, to both patients and our healthcare system, of how data can be used on a foundation of trust to achieve better outcomes for those affected by rare and complex diseases.

To find out more

The Brain Tumour Charity

BRIAN