Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the potential benefits of technology investments, including optical character recognition and natural language processing, to automate manual processes in clinical audit and registry submission across NHS England; whether businesses cases for that investment have been prepared; if so, in which disease areas or audit programmes those cases were prepared; and what were the outcomes of those cases.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
NHS England is exploring a range of functionality to automate manual data processes aligned to clinical improvement, including for our Outcomes & Registries Programme, National Disease Registration Service, frontline digitisation and the promotion and adoption of new technology across provider systems. Our central data and digital transformation business cases are primarily focused on the adoption of the technical capabilities and innovations, applicable in many areas, rather than focusing within specific individual audits or registries alone. Some business cases have been accepted and moved forward.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what proportion of health technology assessments submitted to the National Institute for Health and Care Excellence in the past five years have related to cancer; and what assessment they have made of the importance of up-to-date national registry data to those evaluations.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
In the financial years 2021/22 to 2025/26, to date, the National Institute for Health and Care Excellence (NICE) has made 429 technology appraisal recommendations. Of these appraisals, 218 relate to cancer medicines. The Department has not made any assessment of the importance of an up-to-date national registry on those evaluations. NICE works with companies and wider stakeholders throughout the appraisal process to ensure that its appraisals take into account the available evidence.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what is the current average time from test request to result for tests provided by NHS England's genomic medicine laboratories; and what assessment they have made of the impact of those turnaround times on patient access to appropriate treatment for (1) SOD1 testing in motor neurone disease, (2) germline BRCA1/2 testing in hereditary female cancers, and (3) homologous recombination deficiency testing in breast cancer and ovarian cancer.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
In December 2025, the average turnaround time for genomic tests processed through the NHS Genomic Laboratory Hubs were 42 days for the test code which includes SOD1 analysis for motor neuron disease, as well as other clinical indications, 37 to 42 days for germline BRCA1/2 testing, and 22 days for homologous recombination deficiency (HRD) testing for ovarian carcinomas. These are within the national targets of 42 days for the test code which includes SOD1 analysis for motor neuron disease and BRCA1/2 and 28 days for HRD, supporting timely clinical decision‑making. As genomic results directly inform treatment choices for motor neurone disease, hereditary female cancers, and ovarian carcinoma, maintaining these turnaround times is essential to ensuring patients can access appropriate therapies without delay.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the importance of prompt, large-scale molecular testing to the efficiency of commercial clinical trial recruitment, particularly in cancer; and of how prompt, large-scale molecular testing influences industry decisions on country prioritisation and site selection, in particular for late-phase trials conducted in England.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
As set out in the Life Sciences Sector Plan, the Government aims to double commercial interventional trial participants by 2026, and again by 2029.
Access to large-scale molecular testing will play a role in delivering against this aim, since molecular testing can identify patients with specific biomarkers and target them into clinical trials. More consistent and equitable genomic testing across England will encourage commercial sponsors to place their clinical trials at research sites in the United Kingdom.
To deliver this, we are embedding genomic testing as routine practice within the NHS Genomic Medicine Service and its workforce. This includes seven NHS Genomic Laboratory Hubs delivering comprehensive genomic testing and analysis, such as whole genome sequencing, as part of routine care. The Genomics Education Programme is responsible for upskilling the entire multi-professional, multi-specialty National Health Service workforce in genomics.
The Government also supports the Rare Cancers Private Members Bill. The bill will make it easier for clinical trials on brain cancer to take place in England, by ensuring that the patient population can be more easily contacted by researchers.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to ensure that major acquisitions in the care home sector do not reduce choice or increase costs for residents and local authorities.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
Under the Care Act 2014, local authorities have a duty to shape their care market to meet the diverse needs of all people, and to develop and build local market capacity. This includes commissioning a variety of different providers and specialist services that provide genuine choice to meet the needs of local people and that offer quality and value for money.
These duties are complemented by the Care Quality Commission’s (CQC) role in monitoring the financial health of the largest and most difficult to replace adult social care providers in England through the Market Oversight Scheme. The CQC continues to monitor all providers in the scheme.
Furthermore, whilst fee rates are set by providers of adult social care, all businesses are required to comply with the Consumer Rights Act 2015 by ensuring that they use fair and clear terms in their standard agreements with customers.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what proportion of the £500 million allocated to the Health Data Research Service will be directed specifically towards addressing health inequalities in deprived communities.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
On 7 April 2025, the Prime Minister announced that the Government and the Wellcome Trust will invest up to £600 million to create a new Health Data Research Service, co-designed through engagement with the public and patients, data users, and stakeholder organisations. This service will bring new treatments and cures to patients by safely enabling the use of patient data to super-charge research, attracting investment and making the United Kingdom one of the best places in the world to conduct ground-breaking medical research.
This groundbreaking initiative will deliver significant health benefits to the UK public and patients across the full spectrum of existing health research, including major public health challenges and diseases such as obesity, cancer, diabetes, and heart disease, which we know disproportionately shorten the lives of people in more deprived communities. The service will be designed to support people to get access to clinical trials and outputs from research faster, and the DigiTrials service supports researchers to recruit people to their trials who represent our diverse population.
At the heart of the Health Data Research Service (HDRS) is a national network of Secure Data Environments, built on the existing NHS Research Secure Data Environment Network, which have been developed in lockstep with their local communities, and which cover the whole of England. The HDRS will bring services together to support fast and secure access to data for researchers, but there is no intention to move existing data assets which sit in various organisations across the nation and require expertise to process, gather, and use, and work will continue with communities to ensure that the service continues to develop with patient and public trust at its heart. We will also be closely working with the devolved administrations to ensure this is a UK wide service, and with the relevant charities to ensure that people from all backgrounds are represented.
We are committed to designing the service in close partnership with patients, professionals, and the public to deliver a trusted service, providing safe and secure access to health, social care, and public data, and to ensure that the research enables the improvement of local service provision and preventative health measures. Detailed design work for this will begin once we have a Chief Executive Officer in place.
NHS England and the Department are running a major national engagement programme on data with over 4,000 people across England. The initial findings and recommendations from the public are already informing our approach and will continue to shape the design and governance of the HDRS. This will support everyone, from medical researchers to health charities, to develop evidence-based solutions to major public health challenges.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what safeguards will be put in place to ensure that the health data of people living in deprived communities will be used for the improvement of local service provisions and preventative health measures.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
On 7 April 2025, the Prime Minister announced that the Government and the Wellcome Trust will invest up to £600 million to create a new Health Data Research Service, co-designed through engagement with the public and patients, data users, and stakeholder organisations. This service will bring new treatments and cures to patients by safely enabling the use of patient data to super-charge research, attracting investment and making the United Kingdom one of the best places in the world to conduct ground-breaking medical research.
This groundbreaking initiative will deliver significant health benefits to the UK public and patients across the full spectrum of existing health research, including major public health challenges and diseases such as obesity, cancer, diabetes, and heart disease, which we know disproportionately shorten the lives of people in more deprived communities. The service will be designed to support people to get access to clinical trials and outputs from research faster, and the DigiTrials service supports researchers to recruit people to their trials who represent our diverse population.
At the heart of the Health Data Research Service (HDRS) is a national network of Secure Data Environments, built on the existing NHS Research Secure Data Environment Network, which have been developed in lockstep with their local communities, and which cover the whole of England. The HDRS will bring services together to support fast and secure access to data for researchers, but there is no intention to move existing data assets which sit in various organisations across the nation and require expertise to process, gather, and use, and work will continue with communities to ensure that the service continues to develop with patient and public trust at its heart. We will also be closely working with the devolved administrations to ensure this is a UK wide service, and with the relevant charities to ensure that people from all backgrounds are represented.
We are committed to designing the service in close partnership with patients, professionals, and the public to deliver a trusted service, providing safe and secure access to health, social care, and public data, and to ensure that the research enables the improvement of local service provision and preventative health measures. Detailed design work for this will begin once we have a Chief Executive Officer in place.
NHS England and the Department are running a major national engagement programme on data with over 4,000 people across England. The initial findings and recommendations from the public are already informing our approach and will continue to shape the design and governance of the HDRS. This will support everyone, from medical researchers to health charities, to develop evidence-based solutions to major public health challenges.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to ensure that the economic and employment benefits arising from the Health Data Research Service are distributed equitably across the UK, and not concentrated in existing research clusters such as Oxford and Cambridge.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
On 7 April 2025, the Prime Minister announced that the Government and the Wellcome Trust will invest up to £600 million to create a new Health Data Research Service, co-designed through engagement with the public and patients, data users, and stakeholder organisations. This service will bring new treatments and cures to patients by safely enabling the use of patient data to super-charge research, attracting investment and making the United Kingdom one of the best places in the world to conduct ground-breaking medical research.
This groundbreaking initiative will deliver significant health benefits to the UK public and patients across the full spectrum of existing health research, including major public health challenges and diseases such as obesity, cancer, diabetes, and heart disease, which we know disproportionately shorten the lives of people in more deprived communities. The service will be designed to support people to get access to clinical trials and outputs from research faster, and the DigiTrials service supports researchers to recruit people to their trials who represent our diverse population.
At the heart of the Health Data Research Service (HDRS) is a national network of Secure Data Environments, built on the existing NHS Research Secure Data Environment Network, which have been developed in lockstep with their local communities, and which cover the whole of England. The HDRS will bring services together to support fast and secure access to data for researchers, but there is no intention to move existing data assets which sit in various organisations across the nation and require expertise to process, gather, and use, and work will continue with communities to ensure that the service continues to develop with patient and public trust at its heart. We will also be closely working with the devolved administrations to ensure this is a UK wide service, and with the relevant charities to ensure that people from all backgrounds are represented.
We are committed to designing the service in close partnership with patients, professionals, and the public to deliver a trusted service, providing safe and secure access to health, social care, and public data, and to ensure that the research enables the improvement of local service provision and preventative health measures. Detailed design work for this will begin once we have a Chief Executive Officer in place.
NHS England and the Department are running a major national engagement programme on data with over 4,000 people across England. The initial findings and recommendations from the public are already informing our approach and will continue to shape the design and governance of the HDRS. This will support everyone, from medical researchers to health charities, to develop evidence-based solutions to major public health challenges.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how they plan to involve communities, local authorities, and NHS Trusts in the co-design and governance of the Health Data Research Service to ensure that data use supports locally tailored public health interventions.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
On 7 April 2025, the Prime Minister announced that the Government and the Wellcome Trust will invest up to £600 million to create a new Health Data Research Service, co-designed through engagement with the public and patients, data users, and stakeholder organisations. This service will bring new treatments and cures to patients by safely enabling the use of patient data to super-charge research, attracting investment and making the United Kingdom one of the best places in the world to conduct ground-breaking medical research.
This groundbreaking initiative will deliver significant health benefits to the UK public and patients across the full spectrum of existing health research, including major public health challenges and diseases such as obesity, cancer, diabetes, and heart disease, which we know disproportionately shorten the lives of people in more deprived communities. The service will be designed to support people to get access to clinical trials and outputs from research faster, and the DigiTrials service supports researchers to recruit people to their trials who represent our diverse population.
At the heart of the Health Data Research Service (HDRS) is a national network of Secure Data Environments, built on the existing NHS Research Secure Data Environment Network, which have been developed in lockstep with their local communities, and which cover the whole of England. The HDRS will bring services together to support fast and secure access to data for researchers, but there is no intention to move existing data assets which sit in various organisations across the nation and require expertise to process, gather, and use, and work will continue with communities to ensure that the service continues to develop with patient and public trust at its heart. We will also be closely working with the devolved administrations to ensure this is a UK wide service, and with the relevant charities to ensure that people from all backgrounds are represented.
We are committed to designing the service in close partnership with patients, professionals, and the public to deliver a trusted service, providing safe and secure access to health, social care, and public data, and to ensure that the research enables the improvement of local service provision and preventative health measures. Detailed design work for this will begin once we have a Chief Executive Officer in place.
NHS England and the Department are running a major national engagement programme on data with over 4,000 people across England. The initial findings and recommendations from the public are already informing our approach and will continue to shape the design and governance of the HDRS. This will support everyone, from medical researchers to health charities, to develop evidence-based solutions to major public health challenges.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how they will ensure that the design and implementation of the Health Data Research Service includes the active participation of regional and local institutions, including those in areas of high deprivation.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
On 7 April 2025, the Prime Minister announced that the Government and the Wellcome Trust will invest up to £600 million to create a new Health Data Research Service, co-designed through engagement with the public and patients, data users, and stakeholder organisations. This service will bring new treatments and cures to patients by safely enabling the use of patient data to super-charge research, attracting investment and making the United Kingdom one of the best places in the world to conduct ground-breaking medical research.
This groundbreaking initiative will deliver significant health benefits to the UK public and patients across the full spectrum of existing health research, including major public health challenges and diseases such as obesity, cancer, diabetes, and heart disease, which we know disproportionately shorten the lives of people in more deprived communities. The service will be designed to support people to get access to clinical trials and outputs from research faster, and the DigiTrials service supports researchers to recruit people to their trials who represent our diverse population.
At the heart of the Health Data Research Service (HDRS) is a national network of Secure Data Environments, built on the existing NHS Research Secure Data Environment Network, which have been developed in lockstep with their local communities, and which cover the whole of England. The HDRS will bring services together to support fast and secure access to data for researchers, but there is no intention to move existing data assets which sit in various organisations across the nation and require expertise to process, gather, and use, and work will continue with communities to ensure that the service continues to develop with patient and public trust at its heart. We will also be closely working with the devolved administrations to ensure this is a UK wide service, and with the relevant charities to ensure that people from all backgrounds are represented.
We are committed to designing the service in close partnership with patients, professionals, and the public to deliver a trusted service, providing safe and secure access to health, social care, and public data, and to ensure that the research enables the improvement of local service provision and preventative health measures. Detailed design work for this will begin once we have a Chief Executive Officer in place.
NHS England and the Department are running a major national engagement programme on data with over 4,000 people across England. The initial findings and recommendations from the public are already informing our approach and will continue to shape the design and governance of the HDRS. This will support everyone, from medical researchers to health charities, to develop evidence-based solutions to major public health challenges.