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GENERAL PRACTICE DATA FOR PLANNING AND RESEARCH (GPDPR)
THE DATA EXTRACTION HAS NOW BEEN SUSPENDED TILL FURTHER DATE (NOT YET SPECIFIED)
Please see further information here: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research#further-information-for-gp-practices
The data held in the GP medical records of patients is used every day to support health and care planning and research in England, helping to find better treatments and improve patient outcomes for everyone.
NHS Digital has developed a new way to collect this data, called the General Practice Data for Planning and Research data collection. This will come into force from
Follow this link for more information: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research#further-information-for-gp-practices
You can chose to opt out of sharing your information, please follow the link below for more information, including access the Opt-out online form: https://digital.nhs.uk/services/national-data-opt-out
The collection of GP Data for Planning and Research will now take place from 1 September 2021, rather than 1 July.
We all know data saves lives and there is no clearer demonstration of this than our response to the pandemic. The use of data allowed us to bring down the hospitalisations from COVID-19 by creating a Shielded Patients’ List, for example.
We now have a further two months to first take your feedback and then to communicate more widely with patients in a public conversation.
We’ll also work with other interested parties such as health charities and research organisations to share a wider message about the benefits of the data collection to the health service and life sciences.
The current system for collecting patient data is over 10 years-old and needs to be replaced. It’s clear that making better use of data benefits us all in so many ways from the COVID-19 vaccine rollout to helping find treatments for serious conditions such as coronavirus, cancer and heart disease.
This new improved system will help researchers by combining information covering all phases of a patient diagnosis and treatment, which is already proving vital in investigating Long Covid, for example. The NHS will also use the data to help plan better service provision and ensure there is no disparity in outcomes for different patient groups, as is already being done for patients with learning disabilities, for example.
You and your patients can be reassured that the data is securely protected and will only be made available for the purposes of healthcare planning and research. All requests to access any data that has come from GPs are subject to independent oversight and scrutiny, including review by the Profession Advisory Group which includes members from the BMA and RCGP.
Find out more about the deferral of the GP Data for Planning and Research data collection.
At the moment are our GP records available to hospitals throughout the country when we end up there for treatment? Will the new GPDPR mean hospitals will have access to the records?
Access to restricted information is dependent on whether patients have previously opted out of sharing data. Since 2013 all patients receive an opt out form when registering. Prior to this the NHS conducted a country wide mail shot and sent a leaflet to every house hold informing patients of their intensions to share limited information. It is important to note that not all patient data is available to the Hospital, only relevant things such as major chronic diseases, medication and allergies. i.e. those things that are essential and could save a personal life in an emergency situation.
Is there a central list of patients, eg how come the NHS knew to add myself to the shielding list?
Again back in 2013 the NHS took steps to capture patient health data including lists of chronic diseases, the NHS also engaged with Hospital consultants to obtain a list of vulnerable patients. The NHS reserves a right to act in such a way in the event of a major disaster such as a worldwide pandemic.
How was it possible to ask individual patients to take part in research on Covid antibodies by Imperial College?
Surgeries were given research invites and asked to share them with relevant patients, I do not believe any patients were contacted directly by third parties unless the patient had undertaken a Covid test and given authorisation to be contacted. These tests were deemed essential for the research into the vaccine efficiency.
I think several years ago patients were asked if they wanted their records on the Central Spine? Does that still exist and will it be replaced by GPDPR?
The central spine is still active but does not have the full functionality that it was intended for, it is possible it will be used to support GPDPR. Regretfully we have not been fully communicated to in relation to this matter and must also research via the internet and NHS websites to gather more information.
I think there will be some very confused patients and people will have to make their own decisions as whether to opt out. I know there is information about this on the surgery website but how will people without access to the internet find out about it?
We share your concerns, hence as a GP practice we (and others) complained to the NHS about their intensions to carry this procedure out without full patient consultation, thankfully this led to a delay in the roll out whilst the NHS/Government reviewed their approach. I am also a patient and did not receive any information from my practice. As a GP practice we have not been given any literature to share, we were told the NHS would be doing this centrally and that we should direct patients to their website. Obviously this does not work for everyone, hence we have spent a lot of time engaging with patients on this matter, we have fed this frustration back to the NHS as it is unfair on patients and our team, the NHS must conduct a mass public communication in a variety of medium.