The following is a more polished and slightly amended version [the bits in brackets I didn’t say] of the remarks I made at the ABPI/NIHR conference about big data which took place in London yesterday.  The title of the conference was: ‘360 of Health Data – Harnessing big data for better health.’

I had written a blog for the conference website earlier in the week so the following content wouldn’t have been too much of a surprise to those who had read it and were there.  There was little if any patient input during the day from what I could tell, although the final session in which I took part – ‘Patients harnessing big data’ – included some excellent presentations about the work of HealthUnlocked and Quintiles in building online communities of patients.

Big data is a big stage on which patients and the public should play a leading role

Good afternoon ladies and gentlemen, thank you for inviting me to speak to you today.

Perhaps I can begin by applauding and welcoming the ABPI’s new road map on big data.   However, if I were to take the document to my patient and public colleagues their immediate response would be: ‘where are we on the page?’  That’s a shame because I believe that big data is a big stage and that patients can and should be playing the lead role.

[In fact the road map reminded me of the lyrics to the Talking Heads song: ‘And the future is certain/Give us time to work it out.’  This is what makes the big data so exciting in my view: that it is not all worked out, and there is significant scope for patients and the public to be part of the design of the future]

I wish to make just a few brief points on the topic of ‘Patients harnessing Big Data’ as part of this session:

The relationship we build with patients and the public are a competitive advantage:  I am acutely aware at events such as this of the narrative which surrounds us about austerity, growth, health and wealth.  But patient and public willingness to shape and take part in UK health research – from participating in clinical trials to sharing data – is to the UK’s competitive advantage.  Why are we not making more of it?  That’s the question I get when I visit other countries as I have been fortunate enough to do in the last month.

Public confidence in big data:  We should be doing everything in our power to enable and empower patients – in terms of both their individual and their collective contribution – in the big data arena. That means we should be embracing their challenge.  That’s why it forms one of five pillars in the work we are doing in NIHR to support citizens to drive research:

• Supporting patient choice by providing the right information and tools
• Digital strategy supporting new media use by patients and the public
• Patient leadership supporting research in different contexts
• Patient and public involvement that delivers quality research and efficient delivery
• Using patient insight and experience to improve what we do

Big Data is the perfect stage for the patient:  Big Data would seem to be the perfect arena where we as a research community can demonstrate that we wish to work with and partner the public differently.  Whether at source or in terms of outcomes they are pivotal to the data pipeline.  New technology allows us to co-produce solutions with them in a more tactile and personal way.  Why not make them leading actor?

Let’s get the story and language straight:  Our work with patients on big data is behind the times.  [It’s the Seymour Cray equivalent of public involvement]. We are fracking public attitudes to death until they say the right thing, ‘bigging’ up big data until the promises are unbelievable and the language and concept alien to them. Or we act as if the public can’t be competent until they know as much as us.  Perhaps the truth is they just know different things to you and I, knowledge that is not just equally valid and important but essential to making big data work.

Where is the eco-system when you need it?  We rightly talk about our health research system as a beautifully efficient eco-system – particularly when it comes to the public spending round.  But where is the health research eco-system when it comes to working with the public?   It doesn’t exist.  Our lack of collaboration represents a significant market failure.  I hope our new e-health informatics centres – the Farr Institute – work together to devise one strategy for their patient and public work rather than have four separate ones.

We are short-changing patients and the public. The exchange of knowledge we have with patients and the public should be invested in like other bits of the research infrastructure.  Some of the initiatives I have worked – like the leaflet ‘Your health records saves lives’ – have fallen at the final hurdle not because of a problem with the product but because of a lack of investment by or unwillingness to spend money by funders whether they be charities, pharmaceutical companies, academic organisations etc.

Thank you for listening and I look forward to your questions.