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Monday, March 28, 2016

Sharing your patient record can help researchers save and improve lives

I am just copying and pasting and posting this article and giving all credit due. I am thinking however along these same lines for an article on researching health records, big data analytics, and consent for the use of patient records for research. Mostly I have been studying research data management plans and the trend towards sharing research data on well preserved data library repositories. I'd like to find out where the health data repositories are and I don't just mean with organizations like ICES.

http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Personal-information/Patient-records/index.htm


Sharing your patient record can help researchers save and improve lives

Translation Fund
The NHS is creating a new system to share information from patient records to improve care and research, while protecting each person's confidentiality. Everybody in England can choose how information from their patient record is shared in this new system.
As you make up your mind about sharing your records, more than 40 medical research charities and organisations have joined together to tell you more about how your information can be used for medical research and help you find out more about how your information will be kept safe.

Every time you visit an NHS hospital or your GP, information about your health is recorded and stored in your patient record. The NHS uses this information to help provide the best clinical care for you.

Because your patient record contains personal information about your health, it must be handled very carefully and accessed safely and securely, protecting your confidentiality.
Information from your record can also be used to improve healthcare delivery for all patients, and by health researchers who use it to help them understand the causes of disease and to find better treatments.

Update
NHS England has announced that it plans to delay the collection of data from GP surgeries until the autumn and that it will work with patients and professional groups to ensure information is accessible and reaches all sections of the community in order to build confidence in the initiative.

We understand this decision as we believe that, whilst sharing information from medical records is important for medical research and healthcare delivery, the systems for achieving this need to be trusted and understood by everyone. This delay should allow for fuller communications that ensure people are aware of how their data will be collected and used, the safeguards that are in place, and how to exercise their right to object.
Your choices The NHS is contacting you now with information about the changes and your options
FAQs How researchers may access your information
Why do researchers need your information? Read examples of how researchers have used patient information to save and improve lives
Find out more Links to useful websites