Caldicott and AMRC

The debate around open data has often centred on questions of confidentiality, which is the subject of the Caldicott Review, currently underway under the auspices of Dame Fiona Caldicott. At the Assossication of Medical Research Charity’s blog, Becky Purviss trails the response of the AMRC, which will be given to the review on July 10th:

We think three key areas need to be got right:

• We need a system which fully reflects the huge value of sharing personal health information for research and adopts a proportionate approach to enable this to go ahead.
• We need to get the regulatory system right for patients and researchers so we can all be confident that our personal information will be protected.
• We need to talk about this so everyone can take part in the discussion and make an informed decision about how their data is used.

The whole post is well worth a read, especially in light of recent calls from the British Heart Foundation and others for greater data sharing. We await the report from Caldicott later in the year, of course.