Local GP practices and patients groups have been reminding people of upcoming changes to NHS Digital and patient data. Molebridge in Leatherhead and Fetcham also sent the following brief summary to patients via text :
From NHS Digital via local GP websites :
You may not be aware of changes to the collection and sharing of your data with the NHS.To learn more and how to opt out please click on the link https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/gp-privacy-notice
Type 1 opt out is via a form you complete and send to us – DEADLINE 23rd JUNE. National opt out is done online.
Ashlea Patients Participation Group has shared the following:
|*IMPORTANT INFORMATION* *| YOUR MEDICAL RECORDS AND NHS DIGITAL* There has been relatively little coverage in the media telling NHS patients what will be happening soon to your medical records and what action you can take if you are not happy about it. Due to pressure from privacy campaigners, health charities, patient groups, doctors, the British Medical Association, MPs and others including the UK Information Commissioner, the date for *the transfer of all your medical records to NHS Digital* has been pushed back by 2 months from 1st July. One would have expected this to mean more time for patients to familiarise themselves with what is being planned and to give patients the opportunity to opt out should they choose to do so. However, the Guardian notes that there has been no announcement of a new date by which patients need to exercise their right not to have the details of their NHS care uplifted. At time of writing, this has not officially moved on from 23rd June so if you wish to opt out, it might be wise to do so before 23rd June. *So what is the issue here you might ask?* Led by the Department of Health and Social Care, the plan is to put the medical histories of more than 55 million people in England into a new database, where they will be made available to the private sector and to researchers. This will create a valuable data source for pharmaceutical and public policy research. So far so good. However, the data “scrape” as it is known includes people’s entire health record including physical, mental & sexual health, health-related concerns with family and work, and any drug & alcohol history. *“Essentially all your most intimate private details of your life is being asked to be handed over and we were concerned that the public aren’t aware of what’s being done,” *says one GP *.* NHS Digital says that all patient data will be pseudonymised, however this is not the same as ‘made anonymous’ and critics say it has the possibility of being easily reversible. But ultimately the choice is down to you as patients whether you are fine with your records being transferred, or whether you would like to stop your data being released. It is possible to opt out later, but any data already transferred to NHS Digital will not be removed. If you want to *opt out*, then fill in the form, [available by clicking here (Type 1 Opt-out) and scrolling about half-way down the page], and return it to your GP. (For ease the form has been added as an attachment to this e-mail.) Should you wish to stop your hospital or clinic records from being used for purposes other than your direct care, there is a different process and the website https://medconfidential.org/how-to-opt-out/ is a useful resource for this. And finally, if you are fine with the transfer, there is nothing that you need do. *But please remember, the choice is yours.*|
NHS Digital and Your Data
We would like to share some relevant information to explain how your data is being used by NHS Digital. We hope you find this information useful and that you will choose not to opt out of sharing your data. However, the details about how to opt out are also included below.
For your information, the following NHS Digital video and text below are taken from their website.
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.
The new data collection reduces burden on GP practices, allowing doctors and other staff to focus on patient care.
Why NHS Digital collects general practice data
NHS Digital is the national custodian for health and care data in England and has responsibility for standardising, collecting, analysing, publishing and sharing data and information from across the health and social care system, including general practice.
NHS Digital collected patient data from general practices using a service called the General Practice Extraction Service (GPES), which has operated for over 10 years and now needs to be replaced.
NHS Digital has engaged with doctors, patients, data and governance experts to design a new approach to collect data from general practice that:
- reduces burden on GP practices
- explains clearly how data is used
- supports processes that manage and enable lawful access to patient data to improve health and social care
What the data will be used for
Patient data collected from general practice is needed to support a wide variety of research and analysis to help run and improve health and care services. Whilst the data collected in other care settings such as hospitals is valuable in understanding and improving specific services, it is the patient data in general practice that helps us to understand whether the health and care system as a whole is working for patients.
In addition to replacing what GPES already does, the General Practice Data for Planning and Research service will also help to support the planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions (including coronavirus (COVID-19) and enable many different areas of research, for example:
1. Research the long-term impact of coronavirus on the population
There is a lot about coronavirus that we do not know, including the long-term health impacts. Patient data from GP medical records will be very important in the coming months and years, as scientists analyse and understand the impact of the virus on human health.
2. Analyse healthcare inequalities
For example, to understand how people of different ethnicities access healthcare and how the outcomes of particular groups compare to the rest of the population. This will help the NHS to assess healthcare inequalities and make any necessary changes to its services.
3. Research and develop cures for serious illnesses
For example, patient data is being used by the University of Oxford RECOVERY trial, which has found ways to improve the treatment for people with coronavirus.
Researchers have previously used patient data from GP medical records to show that there was no association between the measles, mumps and rubella vaccine and the development of autism; to confirm the safety of the meningococcal group B vaccine; and to investigate whether certain medications increase the risk of cancer.
What data is shared
This data will be shared from 1 September 2021. Data may be shared from the GP medical records about:
- any living patient registered at a GP practice in England when the collection started – this includes children and adults
- any patient who died after 1 September 2021, and was previously registered at a GP practice in England when the data collection started
NHS Digital will not collect patients’ names or addresses. Any other data that could directly identify patients (such as NHS Number, date of birth, full postcode) is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.
This process is called pseudonymisation and means that patients will not be identified directly in the data. NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify patients in certain circumstances, and where there is a valid legal reason.
We will collect structured and coded data from patient medical records.
NHS Digital will collect:
- data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health
- data on sex, ethnicity and sexual orientation
- data about staff who have treated patients
NHS Digital does not collect:
- name and address (except for postcode, protected in a unique coded form)
- written notes (free text), such as the details of conversations with doctors and nurses
- images, letters and documents
- coded data that is not needed due to its age – for example medication, referral and appointment data that is over 10 years old
- coded data that GPs are not permitted to share by law – for example certain codes about IVF treatment, and certain information about gender re-assignment
If you don’t want your identifiable patient data to be shared for purposes except for your own care, you can opt-out by registering a Type 1 Opt-outor a National Data Opt-out, or both. These opt-outs are different and they are explained in more detail below. Your individual care will not be affected if you opt-out using either option.
Type 1 Opt-out (opting out of NHS Digital collecting your data)
NHS Digital will not collect data about patients who have registered a Type 1 Opt-out with the practice. More information about Type 1 Opt-outs is in NHS Digital’s GP Data for Planning and Research Transparency Notice
This collection will start on 1 September 2021 so if you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with the practice. You can do this by completing and submitting this opt-out form Register your Type 1 Opt-Out Preference.
If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with NHS Digital. They will however still hold the patient data that was shared with us before you registered the Type 1 Opt-out.
If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.
National Data Opt-out (opting out of NHS Digital sharing your data)
We will collect data from GP medical records about patients who have registered a National Data Opt-out. The National Data Opt-out applies to identifiable patient data about your health, which is called confidential patient information.
NHS Digital won’t share any confidential patient information about you – this includes GP data, or other data we hold, such as hospital data – with other organisations, unless there is an exemption to this.
To find out more information and how to register a National Data Opt-Out, please read the Your NHS Data Matters page for more details.