Medical confidentiality at risk

Jocelyn Major 3 February 2014

NHS England has released a new programme, care.data, which will enable doctors to upload medical records to a central system and sell them on to third-party bidders.

The records will be extracted from GPs and uploaded anonymously in spring 2014.

In order to opt out of the care.data programme patients need to actively ask their GP not to upload their records.

In a CUSU council meeting on 27 January, a motion was passed to make students aware of these changes to medical confidentiality.

CUSU expressed concern that the NHS has not obtained people’s consent to upload their records – highlighting the risk that university students will not be aware of the need to opt out of the programme should they not want to be part of it.

Medconfidential, the campaign to keep medical records private, has suggested that information about the change is not being well disseminated. In their press release Medconfidential stated: “We have reason to be concerned that students will not receive copies of publicity material currently being sent out by NHS England to explain a significant change to the way medical records are handled, and will therefore be unable to exercise their right to choose whether they wish to participate in this new scheme.”

The NHS has sent out one leaflet to each household with information about the care.data programme, meaning that some students may not be fully aware of the impending circulation of their medical records.

At their council meeting, CUSU proposed to spend up to £200 to distribute an opt-out form to every student’s college pigeonhole.

The NHS hopes that care.data will improve research and allocation of funds. An NHS England spokesperson said: “Sharing information about the care you have received helps us understand the health needs of everyone and the quality of the treatment and care being provided.”

However, speaking to Cambridge students, it is evident that there is a lack of awareness about the new programme. A first-year Veterinary Medicine student at Trinity Hall commented, “I find it worrying that I haven’t heard anything about care.data. Though I don’t know if I will opt out, I feel that it’s an invasion of my privacy not to have been given the option.”