NHS admits to ignoring patient requests to opt out of data sharing

Great Britain's National Health Service (NHS) has revealed that it disregarded tens of thousands of requests by patients to opt out of a new centralized patient record database because the opt out would have affected the treatment that patients received, according to an article in the Guardian.

The program, called care.data, intends to use the information for reasons other than direct medical care, and according to the original opt-out form for patients, "Opting out will have no effect" on their medical care.

However, the Health and Social Care Information Centre (HSCIC)--the agency that collects the data--acknowledged in a letter to members of Parliament that it did not enact the opt-out requests because doing so could cause patients to miss out on direct care services such as cancer screening, electronic prescribing, e-renewals or e-pathology reporting; patients, HSCIC said, may not have been aware of that. 

"We acknowledge that this is a complex and difficult area and that it has been hard for the public to understand the objection policy in the context of care.data. We remain absolutely committed to dealing with patients and the public honestly," HSCIC said in its letter. ... "The HSCIC Board, having considered this with great care, has agreed the HSCIC should contact those patients that have recorded this type of objection in order to ensure the objection request is fully understood."

Data sharing initiatives in the U.S. have also come under fire for operational problems and privacy issues, and many patients would rather withhold information rather than have it entered into an EHR, which they view as less secure.

The health information exchange (HIE) in Rhode Island was sued because of lack of transparency regarding how patients could opt out of data sharing and how the HIE would keep patient records secure. A recent RAND study noted that it was not yet known whether HIEs are delivering as promised.

To learn more:
- read the Guardian article
- here's the form (.pdf)
- read the letter

Suggested Articles

Roche, which already owned a 12.6% stake in Flatiron Health, has agreed to buy the health IT company for $1.9 billion.

Allscripts managed to acquire two EHR platforms for just $50 million by selling off a portion of McKesson's portfolio for as much as $235 million.

Artificial intelligence could help physicians predict a patient's risk of developing a deadly infection.