(This post was originally written for NIHR and was on the old website)
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 all 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.
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 in the 2017 Report:
"Data about people’s experiences of health & social care has huge potential for improving services and discovering more effective treatments & 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 for Nottingham BRC recently where patient 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 UseMyData are a great beginning - https://understandingpatientdata.org.uk/animations
Derek was one of two patient/public members of the Ministerial Data Strategy Board in 2018-19.