New Service to Collect and Distribute Patient Data from GP Services

A new programme of collecting patient data has just been launched. Originally patients had until 23 June to opt out from a start on 1st July but the start has now been put off until 1st September with currently latest opt-out date as 25th August 2021. You can access the opt-out form below. In relation to this the NHS has a consultation on its new draft data strategy running until 23rd July. At the time of writing the programme had not received the endorsement of the British Medical Association (BMA) or the Royal College of General Practitioners (RCGP).

Previously data was collected in support of programmes such as vaccinations and to measure GP performance in dealing with 30-odd conditions under the Quality Outcomes Framework (QOF) through which GP practices received incentive payments for high performance. The new system will be much more a case of cradle to grave care history, some aspects, like medications, limited to the last 10 years.

The value of Britain's patient data has been estimated at £10 billion per year, but current charges are far below this and are believed to represent NHS costs in providing the data.

We are all aware that the unified approach of our National Health Service offers enormous advantages, as illustrated currently with the Covid-19 vaccination policy.

A particular advantage is that we have uniform data and the NHS number for all NHS patients. Data about the population is a wonderful resource for medical research, and health care planning.

Naturally, this data resource is of interest to commercial companies developing medical products and services, and indeed, as long as products and services are developed in this way, it is advantageous for our data to be used to improve this process, subject to data use safeguards and possible commercial arrangements which benefit the nation. NHS DIgital guarantees that the data is never shared for the purposes of marketing or insurance.

Nevertheless, the central collection of patient data under adequate safeguards is a difficult matter. We have seen the hacking of data from respected companies. We are wary of sensitive personal data being exploited by unscrupulous companies.

Data related to patients' treatment in hospitals is regularly collected centrally by the IT unit of the NHS known as NHS digital. The data is pseudonymised and encrypted before transmission, and then made available to research users for specific, approved projects, both academic and commercial. NHS Digital only levies charges in respects of its costs.

In 2014 the Government made an attempt to collect patient data from GP surgeries with the "care.data" programme. However, this failed to gain public confidence and had to be withdrawn.

Now a new programme of collecting patient data has just been launched and patients have until 23 June to opt out. Most unfortunately, the Government seems to have chosen to proceed by stealth rather than by persuasion.

On the day after the Queen's Speech, 12th May 2021, the NHS issued a Data Provision Notice to GPs, to enable a new platform - the General Practice Data for Planning and Research Service (GPDPR) - which replaces an existing system - the General Practice Extraction Service (GPES) - and should be more reliable and collect more detail about patients.

The new service will collect, for all patients registered at a GP surgery from 1 July 2021, and not opted-out,

  • data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, relating to physical, mental and sexual health,
  • data on sex, ethnicity and sexual orientation,
  • data about staff who have treated patients.

but certain data protected by law, such as some details of IVF treatment and gender re-assignment, will not be collected. Medication data more than 10 years old and free text notes will also not be collected.

Opting Out of the Data Sharing Arrangements

Two types of opt-out can be used:

  1. Opt out at your GP surgery so that your GP data is not collected into the national database - this must be presented as a completed paper form, to your GP surgery by 23 June 2021,
    This is known as a Type 1 opt-out.
  2. Opt out from your data being extracted from the national database except for your own treatment and care or in other quite limited circumstances - this is called the "national opt-out" and can be changed at any time. The exceptions include matters of overriding national interest, cases where the data can be fully anonymised (e.g. by aggregation over sufficient numbers according to NHS standards) and cases where the data is merely demographic in nature. This is known as a national data opt-out.

Type 1 - GP Practice Data Collection Opt-Out

Print out and fill in this form - also attached near the bottom of this page - and hand it in to your GP surgery before 23 June 2021.

National Data Opt-Out

Patients can view or change their national data opt-out choice at any time by using the online service at www.nhs.uk/your-nhs-data-matters/manage-your-choice or by calling 0300 3035678. Online, the process involves giving your name, date of birth and either NHS number or postcode. Identity is confirmed by sending a validation code to an email address or mobile phone that the NHS has associated with you, presumably in other ways if you do not have such information registered with the NHS. You can then make your choice. This sort of opt-out would presumably cover hospital treatment as well as GP data.

Here is one account of the changes .

Here is the NHS's account of their approach to sharing your data .

Here is the NHS announcement of the new collection service .

Here is Computer Weekly's account .

Here is comment in the British Medical Journal .

Here is an article about legal action being taken against this change by a number of campaigning organisations - and David Davis MP .

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Type 1 (GP data) opt-out form (WORD DOCX)41.68 KB