What happens to health data? A patient blog

north west icon North West Coast

Posted on the 6th March 2017

In a trip organised by the Innovation Agency for the North West Coast Connected Health City, Max Williamson, a public representative attended a public involvement meeting onsite at super-secure data centre AIMES Grid Services to hear how health information is safely transformed into health innovation.

At the end of January, in the usual end of January weather, the Innovation Agency’s Public Involvement and Engagement Senate held a meeting at Liverpool’s Innovation Park, where AIMES is running their work.

We were meeting to discuss the efforts made by the group to improve aspects of healthcare in the North West and around Liverpool, particularly in areas outside of the NHS.

The day began with tea, coffee, and introductions, which in a group like this varied hugely, from public health workers to data scientists, and indeed the occasional professor. I, like many others in the group, was there as a patient representative,  to make sure patient voices are heard in meetings about how local health services could be changed for the better.

The meeting itself ran in two parts, but was all based around asking how patients’ health data can be gathered, collated, and analysed in an efficient and ethical way.

Firstly we heard from Alison Brook, the Integrated Programme Manager for Liverpool’s drug misuse and complex needs Clinical Commissioning Group.  Alison discussed the need for careful interpretation of data in groups affected by issues that don’t just include health, but social and economic factors as well.

We heard about the challenges in collecting data from primary care facilities like GP practices, and the problems that entails, particularly when dealing with difficulties like drug abuse and homelessness. The statistics analysed by Alison’s group showed that of the members of the complex needs group, 42% struggled with alcohol use, and that the average life expectancy for this group is 45-47.

These findings show why data, even if retrospective, is so important; without it healthcare professionals, and indeed patients, can’t have evidence to discuss the health problems we face, both locally and throughout the country. Many of these patients lead complex lives that can make data collection difficult, but these figures illustrate their importance.

We then discussed the idea of ‘live data’, that is data collected on a day by day basis, and why it was so hard to implement, especially for this unpredictable patient group, and ultimately came to the conclusion that, at least with the current system of data gathering, it would be wishful thinking to get it to work. But the retrospective analysis touched on earlier is more than enough to, hopefully, begin the process of real data analysis within these groups, and understand how to better prevent and treat their health issues.

The second part of the meeting was held by Professor Dennis Kehoe, the CEO of AIMES, a spin-out from the University of Liverpool, which operates a secure data centre in Liverpool. He explained that AIMES is currently working on a programme called Connected Health Cities (CHC), whereby hospitals in major city centres around the north of England are beginning to share patients’ information in an ethical and safe way, through AIMES, to get a better picture about treatment options for patients in every aspect of the NHS.

With 80% of us using the internet daily, the Senate wondered why, given that we and many others are keen for our data to be used (given that we knew where it is going), it wasn’t all collated in some centralised system or databank? Professor Kehoe explained the difficulties behind this (most of which were logistical), but that the work of AIMES and the CHC programme was certainly a step in the right direction.

Once this centralised system is put in place in the NHS, however, it was clear how many benefits it would bring, for example a saving of £74 million on postage stamps alone!

Last year Professor Kehoe’s work included holding genomics data for Great Ormond Street Hospital, the biggest study of its kind, and this year he’s looking to move into Phase 2 of CHC to demonstrate how real-time collection of data for the CHC network could happen. It’s a huge project, and it is one which we’re sure will bring positive results.

The idea of anonymization of patient data was then discussed. For the CHC programme AIMES will hold pseudonymised data (the year of birth of each patient to researchers but not names or dates of birth) in order to improve service quality within the hospital.

We also heard from Anna Jenkins, who works with AIMES at the University of Liverpool to ask when exactly the data would first be collected i.e. at first presentation, at referral etc. and discussed putting together a group of clinicians and nurse practitioners to interview patients about the complications of data collection, to aid the work of the Public Involvement and Engagement Senate and AIMES Services.

Anna showed us a video she’d helped to put together about Learning Healthcare System for the health Foundation, the link to which can be found here: http://www.health.org.uk/video-learning-health-care-systems .

Although unfortunately I had to miss it to catch a train back to London, Professor Kehoe then offered a tour of AIMES’ facilities to the Senate, which I’m told was really informative about the work they do.

This Public Involvement and Engagement Senate meeting was, overall, an extremely fruitful and interesting one. As my first meeting with the group, and having been involved with other patient groups of a similar scale back home, it was really inspiring to see such passion from every member of the group to improve patient outcomes.

With reference to data, this can be done from a number of angles, but, as our meeting showed, they’re being worked on with vigour in the North West Coast.

About Max Williamson

Max Williamson is a student at University College London studying Biomedical Sciences. 

In 2012, aged 15, Max was diagnosed with testicular cancer resulting in two surgeries and three months of chemo.  He has been in remission since 2013. 

Since this time Max, along with his mum,  has raised over £30,000 for his local hospital.  He is big supporter of Movember and is a passionate advocate of patient involvement in research.  Max became involved in the Public Involvement and Engagement (PIE) Senate through a mutual friend and is also involved in Teenage and Young Adult group affiliated to the Sarcoma Clinical Studies Group.

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