The panel and the National Data Guardian Consultation

medical research

"When we started out as a patient group, one of the issues that concerned us all was how patients’ confidential data is protected. We were all aware of incidences of the misuse of patient data, as well as increasingly significant use of patient data by private organisations such as Google." 

Bob McNabb, patient data panel member, tells us more

"At our meeting in July 2016, this issue was given a definite focus when we considered the Caldicott Review – this was a review undertaken by the grandly named National Data Guardian, Dame Fiona Caldicott on behalf of the Heath Secretary, Jeremy Hunt.

The purpose of the Review – which was the third she had carried out – was to develop data security standards covering patient information, and to propose a new opt-out or consent model for data sharing so that the public can make an informed choice about whether and how their personal information is used for purposes other than their direct health care.

Following the publication of the Review, the Department of Health began a wide consultation to gather opinions about the Review’s recommendations and our discussion focused on the way the public should be given the chance to either opt-out or consent for their confidential information to be used. 

The Review broke this down into two parts

What was important for us was BHF/Cancer Research UK talked through all the issues. They understood our views and concerns and were able to feed it into the consultation responses.

Bob McNabb
Patient Data Panel Member

The first involved setting out in eight statements, each with a brief explanation, what might be called 'the state of play' about the use of patient information. This would include: 

  • what information can be used
  • by who
  • what is it being used for

The second was whether the system should:

  • require people to register that they do not want their personal information to be made available (the opt-out or assumed consent option) or
  • whether people would need to register their consent for the information to be used

We also considered the decisions about how the different uses of confidential information could be combined.

We had a really good discussion about both the statements and opt-out models and there was a lot of consensus about how we, as patients, felt about the assurances. It’s important that patients are offered the choice and they have the information they need to make informed decisions."

 

Last edited: April 2017