Guest post by Alison Stone, from use MY data, describing how patients designed and implemented a way to acknowledge the use of patient data more widely. 

Background

use MY data is a movement of patients, carers and relatives. Our vision is of every patient willingly giving their data to help others, knowing that effective safeguards to maintain the confidentiality and anonymity of their data are applied consistently, transparently and rigorously.

The creation and implementation of a citation acknowledging the use of patient data was one of our earliest aims. At our first planning meeting, July 2015, members suggested the creation of a standard citation that would “Encourage the practice of publications stating that the work was only possible because of the use of patient data.” 

The citation would be a recognition of some of the benefits of using patient data, acknowledging the patient contribution as well as highlighting how their data had been used and would be included on all publications using patient data.

Consultation

use MY data members formulated five potential citations. We took these to the NCRI Cancer Conference in November 2015 and presented them in our session Involving patients in the use of their data, which we hosted with Cancer Research UK. There was consensus from researchers and patients that the citation work should be taken forward.

We next took the citation proposal to Britain Against Cancer, December 2015, presenting it in the session Championing a research-focused NHS – how should we best use patient data? which we hosted with Independent Cancer Patients' Voice and Cancer Research UK.

Our agreed next step was a public consultation to select which citation would be chosen. The consultation was hosted on our website in April 2016. The option that received the most votes and was chosen as the citation was This work uses data provided by patients and collected by the NHS as part of their care and support.

Implementation

Following the selection of the citation we began contacting organisations that use patient data, to request that they use the citation when publishing their work. The original focus was on cancer data publications, following which the focus expanded to include all disease areas

  • March 2017 - The UK and Ireland Association of Cancer Registries adopt the citation across their work
  • June 2017 - The Cancer Data and Outcomes Conference contains large numbers of presentations and analyses that include the data citation
  • July 2017 - Public Health England’s Office for Data Release (ODR) agree that a citation clause will be included in all ODR contracts raised from July onwards
  • August 2017 - Understanding Patient Data adopts the citation, encouraging its use on all work underpinned by patient data, including publications, presentations, event materials and press releases

What patients think

“I think data is really important…We can see where there are shortages in equipment in relation to the population of cancer. We can also see where maybe some hospitals are under performing, or hospitals are over performing. And those that are over performing – with longer survival rates – we can investigate them and see what are they doing better, so that we can improve services as a result of data.

I’ve tried to describe the benefits, but I think Public Health England and bodies like that can do a much better job of saying ‘as a result of this sort of data being available, we have made these steps forward in healthcare’.” Patient Advocate, use MY data.

Find out more

You can find out more about use MY data, follow us on twitter @useMYdata, or email us using getinvolved@usemydata.org.uk.