This is an edited version of a talk that I gave on the 29th November 2019 at an away day for the Surgery, Cancer and Cardiovascular Division of Imperial College NHS Trust. It looked at how data and research can transform healthcare, and how it is important to involve the public and patients in the process – to find out what is important to them and to ensure that we use the data in a way that maintains public confidence.
Data in research
Research has changed. I started my research career in Southampton. My PhD went well but, looking back, I am astonished about the amount of data I collected. If I generated a graph with 20 data points we thought it was crowded. I used a calculator to work out our results.
I did a postdoc in the USA and then came back to the Hammersmith Hospital to run my own laboratory, My first PhD students used to collect hundreds of data points, and used Excel spreadsheets to analyse them.
Now data is easy and often cheap to generate. Whole genomes are sequenced for £1000. When you have massive datasets, the skills needed are very different, you need more than Excel spreadsheets to do the analysis! You also need to invest considerable resources to collect, curate and clean up data.
We also have access to data that didn’t exist before. In North-West London we are fortunate in having the most comprehensive linked data set in the UK which allows us to analyse de-identified data from 2.5 million patients. This is a massive opportunity for research, understanding healthcare, and case finding.
Research has also changed in emphasis. When I did my PhD, it was embedded in an NHS setting so we interacted with patients. However, the concept was that we did research in the laboratory, and then moved it into the clinic. It is now much more likely that the data we get in research will have direct implications for patient treatment, and vice versa. The research is also now better informed by the needs of patients and clinicians.
Data in healthcare
Today’s meeting [the away day on 29 November] has provided a great opportunity to see how data and research can transform the care of the patients that we serve. For example, the sepsis dashboard puts data in the hands of those that need it, making decisions that influence both care and how we organise the service. It is also an example of how different people have had to come together to create the dashboard.
There are amazing possibilities. Imperial College Health Partners have shown how they can develop an influenza dashboard which displays the prevalence of immunisation in at-risk people across North-West London. This can show us where there are hotspots and cold spots. These maps can be overlaid with data on deprivation and housing, raising useful research questions. The dashboard also allows vaccination campaigns to be targeted both in the right places, and in a way that is effective. It may also help GPs with case finding, identifying people at particular risk.
In the future it should be possible to combine data from social media or weather forecasts, resulting in better prediction of when cases are going to come through the front door of surgeries and hospitals.
How to use data
The difficult thing to think about is how to make best use of these opportunities. The difficult bit is not really in building the dashboard, but in thinking who will own it, who will use it, how we will find out how best to employ it, and making sure that the public have confidence in how their data is used. The problem is: how do people who are fully committed to providing the service develop enough bandwidth to adopt things like this and to really exploit them?
I am reminded about how many innovative companies have a 20% rule, that their employees have to spend 20% of their working time on projects that interest them. In Google this has resulted in the development of Gmail and many other innovations we take for granted. The Post It note was developed in 3M as a ‘permitted bootlegging’ project by staff. How do we do the equivalent for NHS staff, so that they can come up with the Post It notes and Gmails that will move the NHS forward?
Intelligent use of data is a massive opportunity to improve care, save costs and to advance knowledge. The use of data in this way will change the way medicine is delivered. While recent examples, such as using data to provide early alerts for acute kidney infection, are showing what data can do we really do not know what the impact will be. In the future doctors, nurses, health professionals and managers will need to be much savvier about how they use data. This includes data from their patients, data about the population they are serving and data that comes from research.
This will happen. When and how is difficult to predict, but it is already happening. It has been said that technological advances always happen two time slower than enthusiasts predict, but their impact is more than twice the size anyone imagines.
What is important for, and what is important to, patients?
But there is an important message about the use of this data. As professionals we are very good at knowing what is important for our patients. That is what we are trained to do. We know it’s important for them to have particular procedures, or tests, or treatments to exercise or whatever it might be. However, we do not always spend enough time thinking about what is important to people. What do they see as important in their lives?
This has been brought home to me in my role as a trustee of the Epilepsy Society. This charity does world leading research in collaboration with Queen Square Square (part of University College London Hospitals and the UK's largest dedicated neurological and neurosurgical hospital). It also provides residential care for people with severe epilepsy. In order to deliver patient centred care, the Society has to find out what is important to the people with epilepsy that we care for.
The sort of things that they say are important to them are doing things like walking on their own to a coffee shop, or having the opportunity to belong to a group, for example of football supporters.
Sometimes these things are aligned with what professionals know is important for them, but sometimes they are in tension. While it is important for an individual to have someone with them when they go out to help keep them safe, that might conflict with their desire to do something on their own.
These are of course choices that clinicians negotiate every day as they try and meet the needs of the patient, balancing what is important for them and to them. In the context of today’s session [at the away day], what we need to do more is think about how we can use data, technology and new processes to help patients have more autonomy or develop a sense of belonging to a bigger group - whatever they need to do. Some of the work that has been showcased today with the remote monitoring equipment and the Care Information Exchange point show that can be done. But often what is needed is not gee-whiz technology but simple stuff that is already available and can be repurposed, such as helping people join Facebook groups or similar.
It can be difficult to find out what is important to people. It is easy to assume that everyone is the same, or extrapolate from our own needs and desires to someone who has a different story.
This year I have been chairing an expert group on research transparency for the Health Research Authority. The strategy is being finalised, but it will look at making sure research is registered in advance, the findings are reported and participants are made aware of the outcomes of research. As someone who has taken part in research, I have always believed in the importance of participants being offered information about the research outcomes. However, as I met various groups around the UK, I was surprised by the strength of feeling from patients and the public about just how important this issue was to them. This was for different reasons. One person I shared a platform with used publicly available information to work with her doctors to find a diagnosis; others want the information for other reasons.
Public confidence in data use
There is also a need to think about how we are looking after all the data. We need to find ways of facilitating ethical use of data for care, research and policy while protecting the interests of the people. To do this we need to know what is important to people. The One London Local Health and Care Record Exemplar (LHCRE) is being established to join up health and care information across London. This will be a fantastic resource for clinical practice and research. However, if it is to work there needs to be public trust and confidence about how the data will be collected stored and used.
The LHCRE programme is going to undertake deliberative engagement. A similar process was used in Ireland in preparation for their referendum on abortion. It will involve providing groups of the public, selected to be broadly representative of the population, with detailed information on how the data could be used, with expert input on the issues raised. These issues are then debated in workshops to provide an agreed series of principles that could inform the way in which the data is used. The deliberation process helps the participants learn about the complex topics and then deliberate trade-offs. This is important as previous engagement has tended to surface perceived benefits and concerns but has not explored with the public the trade-offs that they are willing to make, in the context of the constraints the health system has.
Data is important. It has enormous potential to improve health. However, we need to make sure that it is being used in ways that are important both for and to people, and in ways that are acceptable.
Declaration of interests
Andrew is Chair of Imperial College Health Partners and on the board of the Health Research Authority. He is a trustee of the Epilepsy Society. For other roles that he holds see ajtg.co.uk. He is writing in a personal capacity.
An executive coach and consultant. Andrew has been held senior roles in universities. His interests include medical research and innovation, education, leadership and research ethics.
Web page: ajtg.co.uk
Blog page: andrewgeorgeblog.com
© 2019, Andrew George, all rights reserved
Published 16 December 2019