Should we worry about the new GP data sharing scheme?

Can we trust an NHS database of 61 million people’s medical records?

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What is it and when is it happening?

The General Practice Data for Planning and Research (GPDPR) system aims to centralise and collate the last 10 years’ worth of patient records from GP surgeries into a mega-database managed by NHS Digital.  From then on it will be updated in near ‘real-time’.

In 2021, people might assume that any medical professional should be able to access your records (with the right security credentials) to help the NHS function more efficiently and save patients repeating their story.  Hospital data is already collected in this way and supporters of the proposal point out that this is a logical extension to create consistency and add the invaluable data from our GP visits.  This initiative to find patterns that could reveal new treatments and improvements to the nation’s health, offers much to admire.  The pandemic has highlighted the importance of the GP network in supporting the most vulnerable, rolling out the vaccine programme and sharing the load with hospitals so they don’t become overwhelmed.

The anonymised personal information at the heart of this plan includes details on patients’ physical, mental and sexual health, diagnoses, symptoms, test results, medication and immunisations.  It will also include data on sex, ethnicity and sexual orientation.  They worry that a pandora’s box of negative stories will develop with these ‘exceptions’ as the catalyst.

But critics point out that approved third parties, such as researchers at universities, charities or private companies, will be able to access the data under certain circumstances and believe the small print needs greater scrutiny.

The plan was launched in May 2021 with the intention of gaining public approval for implementation by July 2021.  Concerns that not enough is known about it and worries about patient privacy and confidentiality have now pushed that back to 1st September 2021.

What is the plan for protecting the data on me?

The data should highlight national trends, so will not include names and addresses.  There will be a postcode tag but this will be replaced and stored as a randomly generated unique code.  However, the data will include the names of NHS staff involved in the treatment of each anonymous patient and critics argue that would make it relatively easy to filter 61 million patients down to several hundred, if it got into the hands of someone with illegal intent.

Any organisation wishing to access the data will need to make an application and gain approval.  Only the specific data that is required for each application will be supplied and the intention is for it to be used for planning and research purposes.  NHS Digital also insists the data will ‘never be used for insurance or marketing purposes, promoting or selling products or services, market research or advertising’.

However, some private sector organisations will be able to see it with permission.  For example, a pharmaceutical company carrying out research that could be beneficial to the NHS patients might be allowed to access specific relevant data.

What are the key objections?

Medical records are similar to financial records in the way they represent our most sensitive and personal information and how we would all like to keep them private, or between us and the professional we are dealing with who abides by strict rules on confidentiality.  Critics argue that this is an ‘NHS Data Grab’ and that the NHS has an imperfect (if not downright terrible) record on managing personal data.  The list covers:

  • 2014: The Care.data scheme was axed after a public outcry about plans to share medical data with external agencies.
  • 2015: The Royal Free London Trust transferred patients’ data to Google’s Deep Mind without explicit consent which contravened the Data Protection Act.
  • 2019: An embarrassing story revealed that international pharmaceutical companies had gained access to NHS patient data.
  • During the pandemic, the secretive American big data company Palantir partnered with the NHS Covid-19 datastore to help tackle the effects of Covid-19.  A campaign has been launched called ‘No to Palantir in our NHS’ because of the company’s perceived track record of using data for reasons beyond the scope of the original objective.

One key core objections appears to be:    How can we be sure that this database won’t be breached? 

Breaches feel somewhat inevitable these days and lead to criminal activity including extortion and blackmail, and the use of the data as the source for huge swathes of unwanted marketing.  That would, of course, lead on to an uptick in unwanted nuisance/scam calls, junk email and scams from hackers able to access some or all of that data.

Beyond that extreme worry is one of public trust and belief in the project.

Dr Helen Salisbury, GP and Senior Medical Education Fellow at the University of Oxford, said:

“This is not a good way to build trust.  The lack of clear guidance and information, and the very short notice period to opt out makes it look as if NHS Digital did not want people to know about this project.  If they have complete confidence, why not share plans more openly with patients and give them time to ask questions and make up their own minds about whether they want their records to be part of the database?”

Can I Opt-out?

English citizens can opt out of the system by contacting their GP in one of two ways, but they aren’t that easy to understand at first glance.

The Type 1 Opt-out allows an individual to prevent their identifiable patient data from being shared outside their GP practice for any purposes, other than their own care.   NHS Digital will not collect any data about patients who have already registered a Type 1 Opt-out.  If a person registers for a Type 1 Opt-out after their data has already been shared with NHS Digital, no more of it will be shared in future but NHS Digital will still hold all patient data shared before the Opt-out was registered.  The Type 1 opt-out form is available here.

National Data Opt-out includes information like hospital data as well as GP data.  If someone registers for a National Data Opt-out, NHS Digital won’t share any confidential information about them with other organisations apart from when there is a legal obligation to do so, such as information about Covid-19 infection or their personal care.

IPS View

There has been a lack of publicity around GPDPR and we believe not many people will have the awareness, energy or ability to Opt-Out because it is just so hard to understand for an average person.  With so many records being aggregated, we will have to trust in the efforts of privacy campaigners and medical professionals to maintain scrutiny on this project, so that it delivers on its positive intentions and does not become the threat that so many critics predict.

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