Over the past months we’ve heard and read about a new initiative by the NHS, namely Care.Data. There has been a multitude of debate and issues surrounding this pilot. Firstly, let’s have a look at what Care.Data actually is.Clinical-research-questionnaire

The purpose and goal of the pilot is to help healthcare service improve on the care they provide. Primary care data i.e. data from GP records will be extracted and shared with the Health and Social Care Information Center (HSCIC). The primary care data will be linked with the secondary care data and will publish aggregate data; hence a particular individual will not be identifiable from these aggregated sets of information, although to create the aggregation will require patient identifiable information.

Not all records will be used. Specifically data regarding diagnostic, prescription, investigation results will be used. Although, patient’s records have an element of confidentiality to them, an exemption is granted allowing the information to be share for the purpose of Care.Data. The most likely reason as to why the confidentiality is waived is due to the making use of the information ‘with the intention of improving health, for example by ensuring that timely and accurate data are made available to NHS commissioners and providers so  that they can better design integrated services for patients.  In the future, approved researchers may also benefit.’-(NHS England).

The public have two options if they do not want their data share. Patients can opt out of their data not being extracted at all or allow extraction but not sharing with the HSCIC. Members of the public were due to receive mail explaining their options and a non-response would be considered as compliance. It is the responsibilities of the GP have to do this.

Issues

Although, the concept, purpose and implementation of this pilot seems straightforward on the outset, there have been some concerns and issues rose.

The British Medical Association accepts there are potential benefits of the Care.Data scheme; however, add that confidentiality and ethical concerns cannot be swept under the carpet. The Association of Medical Research Charities (AMRC) say its “a good idea stymied by poor execution” relating to a lack of clarity in some regards, for example, in revealing which specific organisations will have access to the information and who would not be allowed access-insurance companies could use the data for wrong reasons. Essentially, the Health and Social Care Act states that the data is limited to the interests of health and social care in England, but this broad statement could also include the financial and economic interest of health and social care not just patient interest. Furthermore, for those patients who choose to opt out whilst this pilot is being implemented, what will happen to the data extracted/uploaded thus far. Big Brother Watch, an organisation who seeks to protect public privacy share a similar sentiment, encourages patients to opt out with their opt out template.

In addition to this the BBC also raise a few important points:

–          No national television campaign for such a big pilot scheme.

–          No press conference.

–          2/3 of people in a poll said they did not receive the leaflet.

–          Only a video animation on YouTube and NHS England website.

Opt in or out?

Overall, there seems to be a lot of ambiguity and vagueness surrounding the Care.Data scheme. The pilot has been delayed by 6 months therefore there is still plenty of time for the public to make their decision and for the NHS to alleviate the concerns raised by various organisations.

In the meantime it is recommended that each individual perform their due-diligence and ensure they are aware of the progress of this scheme. After all, it is your sensitive data that is being handled and it is your duty to ensure there is no possibility of it falling into the wrong hands.

Comment below and have your say, do you opt in or opt out?

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