Asked by: Baroness Cumberlege (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government, further to the answer by Lord Bethell on 8 June 2021 (HL Deb, col 1319–20), what improvements they have made to the process for patients opting out of their health data being used for research and planning; and how each patient can see where data about them is used.
Answered by Lord Kamall
In July 2021, we committed that the General Practice Data for Planning and Research programme will not access patient data until the following criteria has been met:
- the ability to delete data if patients choose to opt-out of sharing their data with NHS Digital, even if this is after their data has been uploaded;
- the backlog of opt-outs has been fully cleared;
- a trusted research environment has been developed and implemented by NHS Digital; and
- patients have been made more aware of the scheme through a campaign of engagement and communication.
NHS Digital is redesigning the programme with input from stakeholders to take account of these commitments and professional, public and stakeholder feedback. Data collection will begin when the National Data Guardian, the Royal College of General Practitioners and the British Medical Association are satisfied with the proposed arrangements. As part of our data strategy, we will engage on how the opt-out system works in practice, with the aim of making the process simpler and more transparent.
Patients can view how data is used through NHS Digital’s data release register. This shows monthly information on who data has been shared with, which data has been shared and for what specific purpose.
Asked by: Chi Onwurah (Labour - Newcastle upon Tyne Central)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 17 June 2021 to Question 10377 on Medical Records: Data Protection, what proportion of the registered addresses for the organisations with which his Department shares NHS Digital data sets are overseas.
Answered by Gillian Keegan - Secretary of State for Education
The Data Access Request Service (DARS) provides clinicians, researchers and commissioners the data required to help improve NHS services. NHS Digital does this in line with the Data Access Service Process and holds Data Sharing Framework Contracts and Data Sharing Agreements. 1.1% of Data Controllers for the DARS have registered addresses outside of the United Kingdom.
Asked by: Chi Onwurah (Labour - Newcastle upon Tyne Central)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that people are able to retain control of their own patient GP data when interacting with NHS Digital and the General Practice Data for Planning and Research programme.
Answered by Jo Churchill - Minister of State (Department for Work and Pensions)
Patients have the ability to opt-out of the new General Practice Data for Planning and Research (GPDPR) programme and the dataset will always reflect their current preference.
We have committed to starting the collection of data only once a number of tests have been met. A patient’s data will be deleted should they choose to opt-out of sharing their data with NHS Digital, even if this is after their data has been uploaded. This work is ongoing and further plans for the GPDPR programme will be announced in due course.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government, further to NHS Digital’s General Practice Data for Planning and Research data collection, what plans they have (1) to write individually to every affected patient fully explaining the proposed data acquisition and its benefits and risks, (2) to include an easily understandable summary of the Data Processing Impact Assessment in any such letter, and (3) to provide both paper and digital methods for patients to easily opt out if they so choose.
Answered by Lord Bethell
Privacy information can be communicated to patients through a range of different techniques. We have written a letter to all general practitioner (GP) practices in England who are best placed to inform patients about the data they routinely share. A copy of the letter is attached.
We are not ruling out writing to patients but there are concerns that this may not be the most effective way to communicate on this topic. Discussions are ongoing concerning writing to patients, but initially NHS Digital have been asked to work closely with the GP profession to ensure practices are supported in informing patients, whilst acknowledging the need to protect GP practices from additional burden
Patients can register a National Data Opt Out via post, phone or email, or register a Type 1 Opt Out by contacting their GP and we are looking at ways to make this process easier for patients and GPs.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government, further to the NHS Digital project to collect General Practice data for planning and research in England, whether they plan to place documents relating to the (1) transparency, (2) accountability, and (3) risks of the project in the Library of the House; and if so, when.
Answered by Lord Bethell
We have no plans to do so. NHS Digital has published a transparency notice and privacy notice for the programme, which is available in an online only format.
The Data Provision Notice for the data collection outlines that NHS Digital have responsibility and accountability for the dissemination of data as the Data Controller under the United Kingdom General Data Protection Regulations. Following the deferral of the implementation of the programme for further engagement with stakeholders, the Data Provision Notice has been withdrawn to reflect these discussions.
The Data Protection Impact Assessment for the data collection which details the privacy related risks and mitigations will also be published online following its final assurance processes.
Asked by: Margaret Greenwood (Labour - Wirral West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to the announcement of the delay until 1 September 2021 of the implementation of the General Practice Data for Planning and Research (GPDPR) service, what the new date is by which patients can opt out.
Answered by Jo Churchill - Minister of State (Department for Work and Pensions)
We confirmed on 19 July that data extraction will not now begin until a number of tests have been met. These include creating the technical means to allow general practitioner data that has previously been uploaded to be deleted when someone registers a type 1 opt-out. For that reason, patients will have the ability to opt-in or opt-out and the dataset will always reflect their current preference.
Asked by: Jim Shannon (Democratic Unionist Party - Strangford)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking with the devolved Administrations to ensure that NHS data is protected; and whether GP surgeries will be in contact with their patients to offer an opt out option from the sharing of their data.
Answered by Jo Churchill - Minister of State (Department for Work and Pensions)
The General Practice Data for Planning and Research programme’s scope covers England only.
We are working with general practitioners (GPs) to effectively communicate the benefits of this new data collection and the ability of patients to opt-out if they choose to do so. We are developing an engagement and communications campaign to ensure that the healthcare system and patients are aware and understand what is planned.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government, further to NHS Digital’s General Practice Data for Planning and Research data collection, who was consulted about the deferral of this project; and which civil liberties organisations have been consulted about the project as a whole.
Answered by Lord Bethell
NHS Digital has engaged with a range of organisations over recent years when devising the General Practice Data for Planning and Research programme and when taking the decision to pause its implementation. This has included the British Medical Association, the Royal College of General Practitioners, the National Data Guardian, Healthwatch England, Use My Data, the civil liberties organisation MedConfidential and research organisations.
Asked by: Lord Scriven (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government, further to the delay to the start of the General Practice Data for Planning and Research programme, by what date must patients let their GPs know they wish to opt out.
Answered by Lord Bethell
We confirmed on 19 July that data extraction will not now begin until a number of tests have been met. These include creating the technical means to allow general practitioner data that has previously been uploaded to be deleted when someone registers a type 1 opt-out. Patients will have the ability to opt-in or opt-out and that the dataset will always reflect their current preference.
Asked by: Daisy Cooper (Liberal Democrat - St Albans)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will (a) publish and (b) consult key stakeholders on a Data Protection Impact Assessment before proceeding with the proposals to share patient data by NHS Digital, planned to commence on 1 September 2021.
Answered by Nadine Dorries
NHS Digital intends to publish the Data Protection Impact Assessment for the programme following its final assurance processes including legal and stakeholder reviews.