A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.

Other News snippets

This is a short set of items for information or interest, providing a short briefing, plus links where these are available:

Cancer Patient Experience Survey (1st March 2018)
The Cancer Patient Experience Survey (CPES) is a great example of the benefits of collecting patient data.  It uses patient information to inform and drive improvements in patient services and experience.  Over recent months, the future of CPES has been in doubt.  However, it has now been confirmed that CPES will continue in its current format for 2018/19, which is reassuring news. 

Memorandum of Understanding (MoU) between the Home Office & NHS Digital - tracing immigration offenders via patient information - update (1st March 2018)
There have been concerns that tracing immigration offenders via patient information is damaging public confidence in the use of patient data.  We heard concerns about this from patients at our 12 October workshop and have also received feedback from the public. Following the Health Committee’s hearing on 16 January 2018, the Chair wrote to NHS Digital to “request that NHS Digital suspend the MoU immediately and undertake a further and more thorough review of the public interest test”.  The Chair’s letter is here https://publications.parliament.uk/pa/cm201719/cmselect/cmhealth/Correspondence/Wilkinson-2018-01-29.pdf

There have been some further developments:


Parliamentary debate on the Cancer Strategy (1st March 2018)
The All Party Parliamentary Group on Cancer secured a parliamentary debate on the Cancer Strategy.  This took place on Thursday, 22 February.  The value of collecting patient data was highlighted.  If you would like to read the transcript it is here https://hansard.parliament.uk/commons/2018-02-22/debates/3BDD7D0E-1B8E-462A-81FD-A0E53A9C617F/CancerStrategy