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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