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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