Derek C Stewart, OBE, Associate Director for Involvement and Engagement, NIHR Clinical Research Network

Data? The word makes it sound like a lot of numbers


Derek Stewart, patient advocate and Associate Director, NIHR Clinical Research Network, and patient/public member of the Ministerial Data Strategy Board

Date: 04 June 2018

The term itself seems to divorce it from the human aspect. Yet for health and social care, data is fundamentally intelligence about us. It is our information.

If we are to genuinely make a difference to healthcare then we, patients and the public, need to get up close and personal with data.

We should all know that we can opt out and say no to our data being used. I am talking here about the stuff that is gathered about our illnesses, conditions and treatments not about our address when the NHS needs to be in contact. Yet, maybe we need to think about just how useful this information could be.

Equally, we should be able to know how we can shape the wider dialogue about the use of data. We should be able to easily find how to contribute to discussion at local NHS Trusts, General Practice and other organisations. We should be asked our opinions and perspectives. We should know what is being done with data to improve health and social care.

When any research is being contemplated using large data sets there is, I believe, an absolute imperative to pro-actively reach out into the community to engage and involve the public. This has to go beyond having a couple of patient representatives on a committee.

This more expansive approach to involvement is necessary if we are to maintain trust. It is needed if we are to fully understand and allay people’s concerns. It should be required as a means of exploring some of the more complex moral and ethical dilemmas that we are likely to face.

Recent high profile breaches of data illustrate the importance of doing this constantly and well. It is not a matter of choice.

For those of us in Patient and Public Involvement this is a real opportunity to encourage public presentations and open discussion on the use and value of data. Such events must be a true sharing of information.

The patient communities in cancer have been very active over many years as they saw the potential of using and sharing data. We were invited to many meetings and present at events and conferences. Our combined voices have helped to improve diagnosis, treatment, care and survival rates by working closely together with clinicians, researchers and data teams.

This knowledge is explained by Dame Fiona Caldicott, the NHS Data Guardian:

"Data about people’s experiences of health and social care has huge potential for improving services and discovering more effective treatments and ways to provide care. Those benefits will not be realised without public trust."

Some of the most innovative practice, I have come across, in active involvement is actually with data in research.

The team behind Cloudy with a Chance of Pain are holding an event in July to celebrate the way patient involvement has helped shape their research but also to let the public find out more.

I attended a workshop at the NIHR Nottingham Biomedical Research Centre recently where patients were working in partnership to gather and analyse qualitative data.

I am sure there are many other examples where the public are making a difference so please let us know.

Last but far from least, we also need to know what happens with data that is used. It cannot be a one way street with the public providing all the information.

We need to find ways to help us all to use data to remain healthy as well as make improvements when we are ill.

These fabulous animations, from Understanding Patient Data, are a great beginning.

Derek Stewart is a patient advocate and an Associate Director with NIHR Clinical Research Network. Derek is one of two patient/public members of the Ministerial Data Strategy Board.   

Read more about patient data and the NIHR

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health and Social Care.
  • Summary:
    Derek Stewart explains how patient data can be used to potentially improve health and social care services, but that it must be balanced with engaging and involving the public to maintain trust.
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    Derek Stewart, patient advocate and Associate Director, NIHR Clinical Research Network, and patient/public member of the Ministerial Data Strategy Board

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