Our mission

use MY data is a movement of patients, carers and relatives

use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.

use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.

use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.


Data privacy: GP surgery withdraws from kidney screening pilot after patients voice concerns

use MY data submits response to the BMJ

The British Medical Journal (BMJ) published the article Data privacy: GP surgery withdraws from kidney screening pilot after patients voice concerns, on 20 January 2023.

The kidney screening at home pilot was for the direct care of GP surgery patients.  It was funded by NHS England and run by a private technology company.  The surgery cancelled the pilot after three patients raised concerns about privacy.  At least one complained that their Type 1 Opt-out* had not been applied.  As the pilot was for direct care, Type 1 Opt-outs did not apply.

The BMJ writes: “The case has highlighted the sensitivities and complexities concerning access to and use of NHS patients’ data”.  The case also highlights the ongoing, and worrying, confusion around opt-outs, both for GP practices and their patients. 

The surgery states: “In future, we have decided that we will not take searches on trust and we will have a low threshold for excluding those with a type 1 opt-out code. Also, when texting patients to inform them of a service such as this, we will include an immediate opt-out option for the patient to reply to us directly”. 

use MY data Associate Member, Paul Affleck, submitted a rapid response to the article, under the heading Type one objections should not impede direct care.  Writing in a personal capacity, Paul notes the pressures on GP practices, but also their responsibility as data controllers.  He examines the difficulties of the case, including: “Had type one objections been applied other patients who had registered such an objection could have justifiably complained they were being inappropriately denied direct care”.

The rapid response, published on 31 January, is open access and available here.

Unfortunately, the article, published on 20 January, is not open access.  For those with access, it is here.

*Type 1 Opt-outs –information about opt-outs in England is available here.

The follow-on actions for the Secretariat, following discussion with the Executive Group were:

  • Write a rapid response on behalf of use MY data to submit to the BMJ. As part of the response, we will call for clear information and guidance on opt-outs for GP surgeries and their patients.    
  • Contact the National Data Guardian and NHS England, to highlight the issues.

The Secretariat’s submission A decade of confusion was published on 22 February and is available here

The next step will be contacting the National Data Guardian and NHS England, to highlight the issue.


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