https://publichealthmatters.blog.gov.uk/2015/11/13/phe-data-week-putting-patients-at-the-heart-of-big-data/

PHE Data Week: Putting patients at the heart of big data

Last week was the annual scientific conference of the National Cancer Research Institute (NCRI) at the BT Convention Centre in Liverpool, showcasing the latest basic, translational and clinical cancer research, with over 1,500 delegates.

It was significant to see the growing emphasis on the use of data for research, and in particular “big data”, which seems to be everyone’s favourite phrase at the moment.

It’s clear that the concept of big data, the ability to link different data together to generate new insights, has immense potential.  Two plus two can finally equal more than four.

The same themes ran through the recent PHE Annual Conference, which was held in Warwick University and attended by over 1,000 delegates.

I was pleased to chair a session at both of these conferences.  Both sessions were different, but both ended up at the same conclusion.

The PHE conference session was around earlier diagnosis of cancer.  It is good news that we are seeing real improvements in the route that patients reach a diagnosis, which should improve experience and overall survival.

But significantly, all the evidence that was presented in the session was actually a real world example of big data in action.

Clearly, “big” is a subjective term, but nevertheless, the work that was presented had involved something like 400 million different data records, brought together to answer a simple question.  If not big, then certainly not small.

The skills to do this analytical magic are both specialist and dedicated, and the National Cancer Intelligence Network (NCIN) has developed over the last few years into the envy of many other countries, using large and complex datasets to produce ground-breaking analysis and intelligence to improve the lives of cancer patients.

The work also relies on the data being there in the first place, for which the role played by the staff in the National Cancer Registration Service needs to be recognised too.

But the real recognition here must go to the patients whose data this is, and whose diagnosis, treatments, experience and outcomes the data describes.  In the NCIN we have always tried to work hard to keep patients and charities involved in what we do.  From its inception, their role has been to advise, ask, question, suggest, and hold everyone to account!

The most visual example of patients having a true voice is at the annual NCIN Cancer Outcomes Conference, most recently held in Belfast. The mixed audience of 600 included around 100 patients, all active participants.

We ran a workshop at the conference to talk to patients about some ideas, and in particular about a widespread problem which has delayed our work for some time, and which threatens to halt “big data” in its tracks.

The issue is about data access, in particular for research.  This has been a serious problem for a couple of years now, and whilst things have improved (it’s currently “blockage rather than stoppage” as one patient commented), there is a serious risk that it will happen again, particularly as the range and complexity of data increases and organisational nervousness returns.

Which brings me back to the NCRI conference last week.  We ran a large workshop about “involving patients in the use of their data”, which brought together the researchers with the patients whose data they need to use.  In fact despite having one of the larger rooms at the venue, the session was so popular that people were standing all around the room, and others had to be turned away.

The session focused on building confidence, bringing together the patients whose data we hold, with the researchers who need access to this data to drive improvements in diagnosis, treatment, care and outcomes.

despite the wishes of patients, there is still considerable nervousness from large health bodies about sending and using patient data. 

It was clear that despite the wishes of patients, there is still considerable nervousness from large health bodies about sending and using patient data.

The response from the patients was clear and concise.  They wanted, and indeed expected, that the data which they provide as part of their treatment, is used to help improve the diagnosis, care and outcomes for those yet to be diagnosed.  Most were shocked and annoyed that this wasn’t happening.

And herein lies the dilemma.  Whilst there is more and more data available, the worries and concerns about potential misuse or disclosure seem, in many cases, to be outweighing the potential benefits that can be gleaned by actually using the data.

It seems to me that the only way to solve this is to really enact what has been simplistically quoted many times in recent years, and “put the patient at the heart” of this.  That means being clearer about what data we have, what we do (and would like to do) with it, and ask patients for their guidance and leadership.

To this end, we are now running education sessions for cancer patients, to explain the complexities of where the data comes from, who holds it, what it looks like, what the legal framework allows, and where some of our problems lie.  Essentially building a network of truly informed and involved patients, who will play an increasing role in advocacy, support, advice and outward engagement.

But this has to be just the start.  This is very much a movement, and is reflective of a groundswell that patients, at least the ones I meet and talk to, want to see change.

This is also now being reflected in national strategy.  The recently published 'Achieving world-class cancer outcomes: a strategy for England 2015-2020' states:

An inability to link data sets and make these available to providers, commissioners and researchers sustains the provision of sub-standard care. There is extensive evidence that cancer patients want their data to be used for research and to improve care. We must harness their support, ensuring cancer patients are placed at the heart of strengthening our cancer data intelligence.

So the NCIN, together with the National Cancer Research Institute (NCRI) and charity partners are running a further series of workshops for patients, to describe and help plan a wider programme of activities aimed at education, involvement and support from patients for the usage of data to save lives.

We are asking patients to sign-up and be involved, in whatever capacity they feel as the movement develops in the next few months.  They are our strongest supporters (and our biggest challengers), but they are absolutely our strongest asset.

If this movement begins to bear fruit, as I think it must do, then I expect to see the next NCIN Cancer Outcomes conference in 2016 have even more patient participation and leadership, but importantly I want to see that the work that we are doing, to inform, empower and activate patients will already have had an effect, and will have played a small but significant part in improving the lives and outcomes for patients being diagnosed with cancer.

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