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1029094

registered interest
date	19/12/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Medical Records: Databases
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government in which countries the NHS is permitted to host patient identifiable health data; and whether this includes the UK.
tabling member printed	Lord Freyberg
uin	HL12442
answer	answer is ministerial correction date of answer 07/01/2019 answer text <p>The National Health Service does not operate a data localisation policy. In January 2018 the Department, NHS England, NHS Digital and NHS Improvement published guidance for the NHS on offshoring patient data. A copy of <em>NHS and social care data: off-shoring and the use of public cloud services </em>is attached.</p><p>NHS and social care organisations are permitted to host patient identifiable data in countries that provide an adequate level of protection; within the United Kingdom, the European Economic Area, countries deemed by the European Commission to have adequate protections for the rights of data subjects, or in the United States where covered by Privacy Shield. There are no restrictions on where in the UK data may reside. For example, data from the NHS in England data may be hosted in Scotland, and vice versa.</p><p>The guidance makes clear that while there are no additional risks attached to hosting data offshore, local data controllers should adopt a risk based approach to decision making about offshoring data. This provides data controllers with the option of keeping data onshore when they feel it necessary to do so.</p><p> </p> answering member printed Baroness Manzoor question first answered 07/01/2019 16:55:07 answering member 4289 label Biography information for Baroness Manzoor attachment 1 file name guidance_on_nhs_and_social_care_use_of_public_cloud_services1.pdf title NHS and social care data guidance
tabling member	2593 label Biography information for Lord Freyberg

1017055

registered interest
date	28/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Cancer: Screening
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government, further to the Written Answer by Lord O'Shaughnessy on 27 November (HL11452), what was the average turnaround time from sample collection to clinical report for Genomic England's somatic whole genome sequencing for cancer patients in the last six months; what is the most clinically useful timeframe from sample collection to clinical report for such genome sequencing; and how many cancer patients in Genomic England's programme have died to date without receiving their clinical report.
tabling member printed	Lord Freyberg
uin	HL11900
answer	answer is ministerial correction date of answer 06/12/2018 answer text <p>Following reengineering of tumour provision to fresh tissue supply and creating 300 pathways for tumour supply across the 13 NHS Genomic Medicine Centres (GMCs), Genomics England has continued to work with the National Health Service to improve throughput over the life of the programme.</p><p>Over the past six months, the average (median) turnaround time for cancer cases from enrolment to return of analysis was 39 working days. For fast-tracked and clinically urgent cases, this average over the last six months is 25 working days. By September 2018, Genomics England were returning samples at scale in 20 days or less demonstrating the improvements in the majority of cases received.</p><p>The most clinically useful timeframe depends on each individual patient’s clinical circumstances. As the 100,000 Genomes Project is a research programme, patients were all offered the NHS standard of care for their condition, in addition to Whole Genome Sequencing, so their therapy could proceed as rapidly as needed. During the 100,000 Genomes Project about half of the cancer cases in the Project contained actionable findings identifying a potential targeted therapy or clinical trial opportunity.</p><p>To date, 5,801 participants results have been returned to NHS GMCs (some participants have multiple reports). In total, 506 participants in the 100,000 Genomes Project, many of whom had advanced disease at the time of enrolment, died before Genomics England returned a whole genome analysis to the NHS. Of these, 176 were participants who died before their DNA samples were received by Genomics England. In many cases the deceased cancer participants became part of the Project via consent by a nominated representative, relative or friend because of the value for research to help others even though it was too late for the individual concerned.</p> answering member printed Lord O'Shaughnessy question first answered 06/12/2018 14:46:02 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	2593 label Biography information for Lord Freyberg

1017056

registered interest
date	28/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Cancer: Screening
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government what economic modelling NHS England has carried out on the net budgetary impact of introducing a national molecular pathology service in cancer; what estimate they have made of the direct annual cost of such a service; whether they have considered switching off any legacy services to help fund its introduction; and if so, which.
tabling member printed	Lord Freyberg
uin	HL11901
answer	answer is ministerial correction date of answer 06/12/2018 answer text <p>NHS England is developing a National Genomic Medicine service and this will bring together both existing clinical genetics services, and new genomic laboratory infrastructure to provide seamless service delivery for patients with rare and inherited disease and cancer. However, NHS England is not introducing a national molecular pathology service in cancer and therefore has not carried out economic modelling or an estimate of cost for such a service.</p><p>A key element of the Genomic Medicine Service is the National Genomic Test Directory which outlines the entire repertoire of genomic tests – from existing tests for single genes and molecular markers Whole Genomic Sequencing to Whole Genome Sequencing – that are available as part of the National Health Service clinical service. This includes cancer genomic tests.</p><p>As part of the NHS Genomic Medicine Service, a National Genomics Informatics System (NGIS) is being developed by Genomics England, on behalf of NHS England. When fully operational NGIS will enable NHS England to monitor the number of genomic tests being carried out across the country and benchmark activity.</p> answering member printed Lord O'Shaughnessy question first answered 06/12/2018 14:46:33 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	2593 label Biography information for Lord Freyberg

1015843

registered interest
date	27/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Medical Records
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government who owns the (1) information contained in patients’ health records, and (2) health records themselves; and who is responsible for (a) the use of information contained in patients’ health records, and (b) access to the health records themselves.
tabling member printed	Lord Freyberg
uin	HL11843
answer	answer is ministerial correction date of answer 06/12/2018 answer text <p>The Data Protection Act 2018 gives effect to The General Data Protection Regulation (GDPR) introduced in May 2018. The GDPR provides rights in relation to the control of data, rather than referring to ownership.</p><p>The organisation that creates a health record is responsible for the use of information in the record and determines who has access to it and that any access is lawful. In addition, under the national data opt-out an individual has the right to opt out of their data being shared beyond their direct care, and under Article 21 of the GDPR, an individual has the right to object to the processing of their personal data under certain circumstances.</p><p>Every organisation is required by law to maintain the original medical record of patients and must safeguard it from loss, damage, alteration and unauthorised use. Every organisation handling personal data must comply with the GDPR when processing patients’ personal data and is accountable for its own compliance and risk management strategies and decisions.</p> answering member printed Lord O'Shaughnessy question first answered 06/12/2018 14:47:36 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	2593 label Biography information for Lord Freyberg

1007501

registered interest
date	14/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Cancer: Screening
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government what assessment they have made of (1) the economic importance of clinical trial recruitment, especially in cancer research, to the UK economy, and (2) the importance of timely molecular testing in modern cancer trial recruitment; and whether, as a result of any such assessment, NHS England will consider implementing national somatic gene testing in cancers with low survival rates to catalyse research.
tabling member printed	Lord Freyberg
uin	HL11501
answer	answer is ministerial correction date of answer 28/11/2018 answer text <p>Clinical trial recruitment is important to the United Kingdom economy, especially in cancer research. For example, an independent report, commissioned by the National Institute for Health Research (NIHR) Clinical Research Network (CRN) and produced by KPMG’s Economics team, provided an assessment of the economic impact of the NIHR Clinical Research Network’s activities to support clinical research in the UK. The report estimated the gross value added and employment in the UK from CRN supported clinical research activity. It estimated that in the period April 2014 to March 2015 (financial year 2014/15) this activity generated a total of £2.4 billion gross value added and almost 39,500 jobs. Studies on cancer comprise a major part of CRN activity. A copy of <em>NIHR Clinical Research Network: Impact and Value Assessment</em> is attached.</p><p>A growing proportion of cancer trials supported by the NIHR involve molecular testing. One of the main purposes of the NIHR is to initiate studies speedily, and deliver them to time and target. Therefore timely molecular testing is important. This involves working with National Health Service pathology services to ensure that all essential steps are in place to deliver research studies.</p><p>The Chief Scientific Adviser has not made a specific assessment of the importance of molecular testing to drive cancer trial treatment. If a clinical trial that is to be delivered by the NIHR involves somatic gene testing that is not already in place, then the NHS will set up this new somatic gene testing as part of the delivery of the trial. Thus it is the nature of the research that drives clinical trial recruitment rather than the nature of the somatic gene testing that is in place.</p> answering member printed Lord O'Shaughnessy grouped question UIN HL11502 question first answered 28/11/2018 14:50:06 answering member 4545 label Biography information for Lord O'Shaughnessy attachment 1 file name NIHR_CRN_Impact_and_Value_Assessment.pdf title NIHR_CRN_Impact_and_Value_Assessment
tabling member	2593 label Biography information for Lord Freyberg

1007502

registered interest
date	14/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Cancer: Screening
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government what assessment the Chief Scientific Adviser has made of the importance of molecular testing to drive modern cancer trial recruitment, and of the introduction of such testing for which cancers offer the most value to the UK in terms of driving clinical trial recruitment.
tabling member printed	Lord Freyberg
uin	HL11502
answer	answer is ministerial correction date of answer 28/11/2018 answer text <p>Clinical trial recruitment is important to the United Kingdom economy, especially in cancer research. For example, an independent report, commissioned by the National Institute for Health Research (NIHR) Clinical Research Network (CRN) and produced by KPMG’s Economics team, provided an assessment of the economic impact of the NIHR Clinical Research Network’s activities to support clinical research in the UK. The report estimated the gross value added and employment in the UK from CRN supported clinical research activity. It estimated that in the period April 2014 to March 2015 (financial year 2014/15) this activity generated a total of £2.4 billion gross value added and almost 39,500 jobs. Studies on cancer comprise a major part of CRN activity. A copy of <em>NIHR Clinical Research Network: Impact and Value Assessment</em> is attached.</p><p>A growing proportion of cancer trials supported by the NIHR involve molecular testing. One of the main purposes of the NIHR is to initiate studies speedily, and deliver them to time and target. Therefore timely molecular testing is important. This involves working with National Health Service pathology services to ensure that all essential steps are in place to deliver research studies.</p><p>The Chief Scientific Adviser has not made a specific assessment of the importance of molecular testing to drive cancer trial treatment. If a clinical trial that is to be delivered by the NIHR involves somatic gene testing that is not already in place, then the NHS will set up this new somatic gene testing as part of the delivery of the trial. Thus it is the nature of the research that drives clinical trial recruitment rather than the nature of the somatic gene testing that is in place.</p> answering member printed Lord O'Shaughnessy grouped question UIN HL11501 question first answered 28/11/2018 14:50:06 answering member 4545 label Biography information for Lord O'Shaughnessy attachment 1 file name NIHR_CRN_Impact_and_Value_Assessment.pdf title NIHR_CRN_Impact_and_Value_Assessment
tabling member	2593 label Biography information for Lord Freyberg

1007503

registered interest
date	14/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Cancer
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government how the UK's (1) one year, and (2) five year cancer survival rates compare to (a) France, (b) Germany, (c) Belgium, and (d) Sweden, as reported in international comparisons such as Eurocare-5; and what are the 20 cancers by incidence for which the difference in survival rates between the UK and other countries is greatest.
tabling member printed	Lord Freyberg
uin	HL11503
answer	answer is ministerial correction date of answer 28/11/2018 answer text <p>The following table provides data on one-year and five-year relative survival by percentage for all cancer patients diagnosed 2000-07 in England, France, Germany, Belgium and Sweden; age-standardised.</p><p>One-year and five-year relative survival (%) for all cancer patients diagnosed 2000-2007 in England, France, Germany, Belgium and Sweden; age-standardised.</p><p> </p><table><tbody><tr><td><p> </p></td><td><p>One year</p></td><td><p>Five year</p></td></tr><tr><td><p>England</p></td><td><p>68.14%</p></td><td><p>50.20%</p></td></tr><tr><td><p>France</p></td><td><p>77.75%</p></td><td><p>58.62%</p></td></tr><tr><td><p>Germany</p></td><td><p>76.71%</p></td><td><p>59.09%</p></td></tr><tr><td><p>Belgium</p></td><td><p>78.90%</p></td><td><p>60.44%</p></td></tr><tr><td><p>Sweden</p></td><td><p>81.13%</p></td><td><p>64.75%</p></td></tr></tbody></table><p> </p><p>Tables showing one-year relative survival by percentage for all patients diagnosed with 20 cancers 2000-07 in England, France, Germany, Belgium and Sweden; age-standardised and five-year relative survival by percentage for all patients diagnosed with 20 cancers 2000-07 in England, France, Germany, Belgium and Sweden; age-standardised are attached due to the size of the data.</p><p>The 20 cancers listed in the attached table have the highest numbers of diagnoses in England and are ranked according to the number of diagnoses.</p><p>The source of this data is EUROCARE.</p><p>It should be noted that EUROCARE does not provide data for the United Kingdom as a whole. The tables contain information for England only.</p><p>EUROCARE provides full coverage of the populations of Sweden and England, but only provides 11.1-22.3% national coverage for France; 22.6% for Germany and 58.1% for Belgium.</p><p>Source: Rossi et al., The EUROCARE-5 study on cancer survival in Europe 1999-2007: Database, quality checks and statistical analytical methods European Journal of Cancer 2015; 51: 2104-19.</p> answering member printed Lord O'Shaughnessy question first answered 28/11/2018 14:51:55 answering member 4545 label Biography information for Lord O'Shaughnessy attachment 1 file name HL11503_attachment_formatted.docx title HL11503_attachment_formatted
tabling member	2593 label Biography information for Lord Freyberg

1006667

registered interest
date	13/11/2018
answering body	Department for Digital, Culture, Media and Sport
answering dept id	10
answering dept short name	Digital, Culture, Media and Sport
answering dept sort name	Digital, Culture, Media and Sport
hansard heading	Museums and Galleries: Copyright
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government, further to the Written Answer by Lord Ashton of Hyde on 12 November (HL11086), which stated that "Complaints about charges for re-use by museums and galleries may be referred to the Information Commissioner for a binding decision”, whether this is consistent with the Information Commissioner’s Office (ICO)’s Guide to RPSI, which states that it “can issue a decision notice, unless the complaint concerns charges above marginal cost, in which case we make a non-binding recommendation”, and the ICO’s Decision Notice FS50619465 of 4 April 2017, which states that it can “only make recommendations in respect of any charges levied under the RPSI.
tabling member printed	Lord Freyberg
uin	HL11447
answer	answer is ministerial correction date of answer 26/11/2018 answer text <p>The Information Commissioner’s (ICO) guidance summarises the general issue of charging for re-use, but does not go into specific details beyond this.</p><p> </p><p>Regulation 19 of RPSI states that in the case of bodies subject to regulations 15 (3) (a) or (b), complaints about re-use charges are subject to recommendation only by the Information Commissioner and appeals against recommendations can lead to a binding decision at tribunal.</p><p> </p><p>Museums and galleries’ charging falls under regulation 15 (3) (c), meaning that the usual redress route of a binding decision by the Information Commissioner applies.</p><p> </p><p>The ICO have confirmed they will be updating their guidance to make this clear.</p> answering member printed Lord Ashton of Hyde question first answered 26/11/2018 12:11:06 answering member 4247 label Biography information for Lord Ashton of Hyde
tabling member	2593 label Biography information for Lord Freyberg

1006668

registered interest
date	13/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Cancer: Screening
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government which cancers have been recommended by NICE for molecular testing; and of those cancers, for which biomarkers in relation to (1) prognostic tests, and (2) theranostic or treatment predictive tests.
tabling member printed	Lord Freyberg
uin	HL11448
answer	answer is ministerial correction date of answer 27/11/2018 answer text <p>The National Institute for Health and Care Excellence (NICE) recommends molecular testing for the following cancers:</p><p>- Acute myeloid leukaemia;</p><p>- Bladder;</p><p>- Brain;</p><p>- Breast;</p><p>- Chronic lymphocytic leukaemia;</p><p>- Chronic myeloid leukaemia;</p><p>- Colorectal;</p><p>- Non-small-cell lung cancer;</p><p>- Melanoma;</p><p>- Oesophago-gastric;</p><p>- Ovarian, fallopian tube and peritoneal;</p><p>- Pancreatic;</p><p>- Prostate;</p><p>- Upper aerodigestive tract; and</p><p>- Unknown primary origin.</p><p>NICE refers to the following companion diagnostic biomarkers in its guidance:</p><p>- c-Kit (CD117);</p><p>- HER2;</p><p>- KRAS;</p><p>- EGFR-TK;</p><p>- Philadelphia chromosome;</p><p>- BRAF V600;</p><p>- ALK;</p><p>- BRCA;</p><p>- p53;</p><p>- PD-L1;</p><p>- RAS;</p><p>- BCR-ABL1;</p><p>- FLT3;</p><p>- ROS1;</p><p>- BRCA1 (germline); and</p><p>- Somatostatin receptor-positive.</p><p> </p><p>Tests that are primarily used for diagnosis, monitoring or screening often provide prognostic information. Consequently, there are a large number of biomarkers, many of which are used in standard testing practice and so are not specifically referred to in NICE guidance. Multiple and combinations of biomarkers are often used to provide prognostic information and companies developing tests often create their own combinations.</p><p>As many tests look for multiple biomarkers for a single purpose and many tests in standard practice provide prognostic information, NICE is unable to provide categorical information on prognostic tests.</p> answering member printed Lord O'Shaughnessy question first answered 27/11/2018 15:29:48 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	2593 label Biography information for Lord Freyberg

1006669

registered interest
date	13/11/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Cancer: Screening
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty's Government which NHS England trusts currently carry out cancer tests in compliance with NICE guidelines; and in relation to which cancers.
tabling member printed	Lord Freyberg
uin	HL11449
answer	answer is ministerial correction date of answer 27/11/2018 answer text <p>NHS England does not hold this information.</p> answering member printed Lord O'Shaughnessy grouped question UIN HL11450 HL11451 question first answered 27/11/2018 15:48:20 answering member 4545 label Biography information for Lord O'Shaughnessy
tabling member	2593 label Biography information for Lord Freyberg