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
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