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MPH Student Presentations on the NHS Care.Data Programme

As part of a session on primary care data in the Health Informatics module on the Imperial Master of Public Health Programme, I asked students to work in two groups to present arguments for and against the NHS Care.Data programme. Care.Data is an NHS programme that will extract data from the medical records held by general practitioners (GPs) in England. The Care.Data programme takes advantage of the very high level of use of electronic medical records by GPs in England. After extraction, data will be uploaded to the NHS Health and Social Care Information Centre (HSCIC). The data will then be used for functions such as health care planning, monitoring disease patterns and research. The programme has been controversial with proponents arguing that the programme will bring many benefits for the NHS and the population of England; and opponents arguing it is a major breach of privacy. You can view the two presentations to help inform you further about these arguments:



You can also read the NHS Guide to Care.Data, Information on Care.Data on NHS Choices, and an Unofficial Guide to Care.Data published by wired.co.uk.

Comments

Anonymous said…
Don't forget the constant failure of Government inspired databases
cobweb said…
remember if you wish to agree to share there may be others in your life who may not wish to agree so you will be compromising their right to privacy
Anonymous said…
"Don't forget the constant failure of Government inspired databases" <-- this database has been working fine for 25 years with secondary care data. All they're doing is expanding it to include primary care
boneman said…
I would say the 'Against' argument wins convincingly - on the basis of the two PowerPoint presentations...
Anonymous said…
So sad to see so many against this excellent initiative. I would share my data willingly. Not just for my sake but for all mankind. Enormous benefits can come when all this data is "mined" by PhD students which can lead to better insights into some diseases and better treatments which benefit millions of people. Some comments elsewhere seem to be paranoid about private companies benefiting in some way. Every time you go to the chemist with a prescription it doesn't seem to bother you then. So the "Big Pharma" guys seem to be not so bad after all, when you need them.
maryhawking said…
There are a number of issues involved in care.data - including management of the linked datasets (which will be so rich that they ought to be considered re-identifiable): who has access and how that access is managed ( a 'data lab' environment such as the one operated by QResearch is inherently less risky than a release of the whole dataset): the quality of the data gathered, and whether the two (or more) datasets being linked contain comperable data.
see
http://phcsg.org/clicsig-5614-can-care-data-be-made-compatible-with-patient-confidentiality/
There has been support for the concept of using the incredibly rich data held in GP medical records for research purposes for a long time - hence the existence of research databases such as QResearch, the CPRD, ResearchOne, and THIN.
http://phcsg.org/publications/fair-shares-for-all-final/

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