The complex problem of storing health data – the solution is in patients' hands

The report in BMJ Open and the BBC (Sat 07 2019) of research showing that patient safety is risked by hospitals across England using 21 separate electronic systems to record patient health care, demonstrates the scale and importance of this crucial issue to the nation’s health.

The BBC report that Imperial College found the systems cannot "talk" to each other, making cross-referencing difficult and potentially leading to "errors". Of 121 million patient interactions, there were 11 million where information from a previous visit was inaccessible.

Dr Leigh Warren, who worked on the research, said:

…hospitals and GPs often don't have the right information about the right patient in the right place at the right time….This can lead to errors and accidents that can threaten patients' lives."

While we have a world-renowned National Health Service in terms of medical expertise and care, clinicians are continually battling with time-consuming data storage and sharing issues. Having worked in and with the NHS delivering integrated systems for hospitals for over 30 years there is a constant assumption that getting systems to talk to each other is the answer which has wasted money on numerous National Health IT programs.

Ironically, the solution is in patients' hands - literally. Evergreen Life is spearheading the drive for everyone to have access to, and ownership of their personal health data. Learning from the barriers to integrate systems Evergreen Life has delivered an App allowing people to download and take their health records with them. This overcomes the fact that each organisation in the NHS is its own data controller which means the person needs to give explicit permission to share their data. This problem is then compounded by the defensive bureaucracy in the NHS and the fact we now get healthcare from private organisations and outside England.

Under the NHS GP contract, everyone in England has the right to have a copy of their GP and hospital records accessible to them, and to carry it in their pocket on an NHS-assured app like Evergreen Life. In the new GP contract the NHS is now planning to break up our National GP Systems to encourage competition so that the only accurate and complete record will be the one you can own and carry with you.  

This then allows people to build a complete picture by adding records from every health organisation they use. Not only does this offer users a consolidated and holistic view of their general health and wellbeing but, at a point where critical treatment may be necessary it will offer healthcare professionals a swift and full picture of the patient they’re treating.

Evergreen Life asks users to consent to their data being shared in a de-identified way so that information from it can improve healthcare for all. Each user joins a community to share data freely with each other so that the best approaches to staying well can be shared with the data being owned by the patient and not an organisation.

We at Evergreen Life welcome comments from Lord Ara Darzi, the report’s lead author and co-director of the IGHI, London's Imperial College's Institute of Global Health Innovation, which looked at data from 152 acute hospital trusts in England, focusing on the use of EMRs on the wards. The team from London's Imperial College's Institute of Global Health Innovation (IGHI) found that quarter of hospital trusts were still using paper records. Ten per cent of hospital trusts were using multiple systems within the same hospital.

Lord Darzi said:

It is vital that policy-makers act with urgency to unify fragmented systems and promote better data-sharing in areas where it is needed most - or risk the safety of patients."

This is precisely what Evergreen Life has been doing since 2016. We are adding 5,000 users a week nationally. The app has fast approaching 750,000 users, with nearly 500,000 connecting to their GPs for prescriptions, appointments and other activity. 99.5% of all GPs in England are now linked up.

Evergreen Life is the only wellbeing app to combine GP records with lifestyle, fitness, mental health and DNA information. The user is then left in control of who they let see the record and what they put in it.

There is no integrated system in place which can make sense of the patient data which is stored in countless different databases, and we welcome the report which makes the problem clear and calls for the NHS to ensure its many different systems can work together. This can be achieved by all NHS systems giving a copy of the patient data to each patient they treat. The NHS has already developed standards for this and is on track to deliver them. Combining the GP data with the data from other NHS systems in a personal database owned by the patient overcomes all the issues which have plagued national initiatives to integrate systems in the past.