Tag: Lord Freyberg

The below Parliamentary question was asked by Lord Freyberg on 2016-03-03.

To ask Her Majesty’s Government what timeframe has been agreed for Genomic England to publish a plan with patient volumes that can be shared with Parliament, and what steps they will take to hold the responsible individuals to account if they fail to deliver on any such plan.

Lord Prior of Brampton

There are currently no plans to publish future patient volumes. However, the Department holds delivery partners to account for delivery of the project.

The below Parliamentary question was asked by Lord Freyberg on 2016-07-13.

To ask Her Majesty’s Government how many postgraduate students in England were enrolled in two-year masters’ degree courses to study (1) applied art and design, (2) art and design, (3) drama, (4) media, film or TV, (5) music, (6) dance, (7) performing arts, and (8) design and technology, in (a) 2009–10, (b) 2010–11, (c) 2011–12, (d) 2012–13, (e) 2013–14, (f) 2014–15, and (g) 2015–16.

Earl of Courtown

Information on enrolments at UK Higher Education Institutions is collected and published by the Higher Education Statistics Agency (HESA), and the latest academic year for which data are available is 2014/15.

The Joint Academic Coding System (JACS) is the classification of subjects used by HESA. The specific breakdown of subjects requested is not available using the JACS classification, so a breakdown of the Creative Arts and Design category has been provided as an alternative.

The government is for the first time introducing a new £10,000 master’s loan to support those wishing to progress into postgraduate study.

First year enrolments¹ to two-year masters² degree courses in Creative Arts and Design subjects. English³ Higher Education Institutions (HEIs). Academic years 2009/10 to 2014/15:

	2009/10	2010/11	2011/12	2012/13	2013/14	2014/15
Fine art	625	610	700	630	695	700
Design studies	1,025	1,135	1,090	1,085	1,225	1,125
Music	710	700	680	675	680	630
Drama	165	190	205	250	230	255
Dance	55	45	45	35	65	50
Cinematics & photography	350	335	370	445	375	200
Crafts	15	15	20	5	20	10
Imaginative writing	400	360	380	495	370	345
Others in creative arts & design	90	120	105	125	90	110
Total (Creative arts & design)	3,425	3,515	3,595	3,745	3,750	3,425
Total (all subjects)	39,200	32,995	35,475	33,630	32,885	33,965

Source: BIS analysis of the HESA Student Record

Note: All figures are rounded to the nearest 5.

1. Figures are Full-Person-Equivalents (FPE), so if someone is jointly studying Fine art and Design studies, they would count as 0.5 FPE within each category.

2. Figures relate to students with an expected study length of less than or equal to two years, but more than one year.

3. For consistency across years, the Open University is counted as an English HEI.

The below Parliamentary question was asked by Lord Freyberg on 2015-11-30.

To ask Her Majesty’s Government how many NHS England Trusts provide prostate surgery; how many of those track their incontinence rates after prostate surgery; of those hospitals that track outcomes, what is the average rate of post-surgical incontinence; what assessment they have made of whether survey-based research could be used to estimate the incontinence rate of those hospitals that do not track their outcomes; and if so, what is their estimate of the incontinence rate in those hospitals.

Lord Prior of Brampton

The National Prostate Cancer Audit 2014 found that 61 National Health Service trusts in England currently carry out radical prostatectomy, although others may carry out other surgical procedures. Estimates are not collected centrally of the number of patients who experience post-surgical incontinence.

According to Quality of Life of Cancer Survivors in England: Report on a pilot survey using Patient Reported Outcome Measures (PROMS), published by the Department and the NHS in 2012, 44% of prostate cancer patients reported some urinary leakage and this was associated with lower quality of life scores. A copy of the report is attached.

Prostate Cancer UK and the Movember Foundation are currently funding a PROMS programme, Life After Prostate Cancer Diagnosis, to assess for the first time the long-term quality of life of prostate cancer survivors, including the proportion who suffer from incontinence and other treatment related consequences.

The below Parliamentary question was asked by Lord Freyberg on 2016-01-21.

To ask Her Majesty’s Government how many (1) definitive, and (2) actionable, diagnoses are made for every 1,000 genomes sequenced as part of the rare disease arm of 100,000 Genomes Project; and how many diagnoses they estimate would have been made if the Project were run using (1) whole, and (2) medical, exome technology; and if those estimates are not available, why not.

Lord Prior of Brampton

The 100,000 Genomes Project is not intended to provide definitive or actionable findings from whole genome sequencing. This is the responsibility of the National Health Service Genomic Medicine Centres based on interpretation reports provided by Genomics England. To date approximately 20 reports have been issued based on the initial interpretation of the pilot phase genome data. It is not possible to estimate the comparison between whole genome and exome methods for these patients. That is because the eligibility criteria for patients to be invited to participate in the 100,000 Genomes Project require that they remain undiagnosed after standard NHS diagnostic tests.

The below Parliamentary question was asked by Lord Freyberg on 2016-03-17.

To ask Her Majesty’s Government whether any plans for a database of outcomes from innovative medical treatments will be subject to the patient level extraction process of the Standardisation Committee for Care Information.

Lord Prior of Brampton

The Access to Medical Treatments (Innovations) Bill, which has passed through all Parliamentary stages and is awaiting Royal Assent, provides a power to the Secretary of State for Health to direct the Health and Social Care Information Centre to; design, build and operate a database of innovative medicines which clinicians may wish to consider helping their patients gain access to, which will be implemented using internationally standardised medical coding.

The below Parliamentary question was asked by Lord Freyberg on 2016-07-11.

To ask Her Majesty’s Government, further to Written Answer by Lord Prior of Brampton on 7 July (HL829), why Genomic England cannot supply data without delay on the number of patients in the cancer programme who have subsequently died, in the light of the fact that the Office of National Statistics states that the information is available within two months of death from the cancer registry.

Lord Prior of Brampton

The arrangements for Genomics England to access patient data are different from the routine data supplied by the Office of National Statistics or other centralised patient data services. The wider patient dataset (including mortality data) will be imported and linked when the genome data is made available to researchers.

The below Parliamentary question was asked by Lord Freyberg on 2015-11-30.

To ask Her Majesty’s Government what assessment they have made of the performance of the NHS England cancer genetic testing service compared to the French system run by the Institute Nationale du Cancer in terms of equality of access as measured by the percentage of eligible patients who actually receive tests for (1) breast cancer, (2) lung cancer, (3) colorectal cancer, and (4) melanoma.

Lord Prior of Brampton

NHS England has not, to date, undertaken a direct comparison of the English and French health systems in respect of genetic testing practice for cancer.

NHS England does not hold data on the percentage of stage 2b, or higher, cancer patients in secondary and tertiary centres who were genetically tested. Detailed information on the clinical circumstances, or reasons, for referral for genetic testing for individual patients is not currently collated on a national basis.

NHS England does not consider business cases from individual National Health Service trusts in relation to the adoption of new genetic tests. Instead, NHS England considers national clinical commissioning policy proposals on the eligibility of a particular test, or treatments to be made available in the presence of particular genetic markers. These are considered and where agreed, funded consistently across England for services falling within NHS England’s direct commissioning responsibilities.

Examples include the separate policies (published in July 2015) confirming eligibility for Ivacaftor for the treatment of cystic fibrosis in the presence of certain gene mutations, and confirming eligibility for testing for BRCA1 and BRCA2 gene mutations, respectively. Copies of the policies are attached.

In addition, the UK Genetic Testing Network currently presents new genetic testing proposals to NHS England for funding consideration based on the conclusions of their assurance programme. These are considered, alongside other new policy proposals, as part of the annual funding prioritisation process, where there is a net annual investment to be made to support their adoption.

Information on the average turnaround time for cancer genetic tests is not currently collated, or analysed, nationally. However, NHS England will be undertaking a procurement exercise in the coming months to support the strengthened provision of genetic testing across England. This includes more consistent reporting of activity and other performance indicators, including the timeliness of reporting on receipt on referrals. The supporting national service specification, setting out the standards required of commissioned providers, has been the subject of a recent public consultation.

The below Parliamentary question was asked by Lord Freyberg on 2016-01-21.

To ask Her Majesty’s Government what are the costs per test in rare disease treatment using (1) whole genome, (2) whole exome, and (3) medical exome, sequencing; and if those figures are not available, why not.

Lord Prior of Brampton

This information is not held centrally by NHS England or the UK Genetic Testing Network. Where the cost of these tests falls outside of tariff, costs will vary according to commissioning arrangements, the systems in place and the technology used.

The cost of whole genome sequencing will continue to change in line with advances in technology. Costs will also need to be defined and include full bioinformatics analysis and clinical interpretation which is likely to be more costly than the sequencing itself.

The below Parliamentary question was asked by Lord Freyberg on 2016-03-17.

To ask Her Majesty’s Government when they plan to publish a response to their consultation on accredited safe havens, Protecting personal health and care data: a consultation on proposals to introduce new regulations, which closed on 8 August 2014.

Lord Prior of Brampton

The Department received 278 responses to the 2014 consultation Protecting personal health and care data, but was unable to publish the Coalition Government’s response to that consultation before the 2015 election.

The consultation set the clear ambition to move as quickly as possible to a future state where:

– the Health and Social Care Information Centre (HSCIC) is the place for holding identifiable health and care information at the national level;

– access to data is more automated so that routine functions, including many commissioning functions, do not require access to identifiable data; and

– consent is used more widely as the means for sharing identifiable information.

Analysis of consultation responses demonstrated no obvious consensus about the function, purpose, number and controls required for Accredited Safe Havens (ASHs) to operate. Since the 2014 consultation, HSCIC, working with NHS England, local government, Public Health England and other key stakeholders has committed to the delivery of the future state within two years, without the need for interim ASHs. Delivery of these functions by HSCIC has the added benefits of:

– increasing the likelihood of the public that there are robust protections and safeguards in place for their health and care data and information and;

– reducing the need for the health and care system to use identifiable data as a basis for delivering their functions.

The Government has concluded that the focus should be on supporting the HSCIC and NHS England in taking forward the future state as soon as possible. This will address the need to support integration and, in the longer term, to ensure flexibility is built in to reflect future priorities and also developments in technology and data.

In September 2015, The Secretary of State for Health commissioned the Care Quality Commission to undertake a review of data security in the National Health Service, and in parallel commissioned Dame Fiona Caldicott, the National Data Guardian, to undertake an independent review of data security and consent, to:

– Develop new data security standards;

– Devise a method of testing compliance with the new standards, and;

– Propose a new consent/opt-out model for data sharing.

The National Data Guardian’s independent review will report shortly and the government will consult on the recommendations and respond to them in due course.

The below Parliamentary question was asked by Lord Freyberg on 2016-07-19.

To ask Her Majesty’s Government what discussions they have had about patients’ access to rare cancer medicines that have received a marketing authorisation after the closure of the old Cancer Drugs Fund list and before the launch of the new Cancer Drugs Fund on 29 July, but that have not yet been approved by NICE.

Lord Prior of Brampton

All cancer drugs licensed since July 2015, but unable to undergo assessment by the Cancer Drug Fund (CDF) in 2015-16 on account of its closure to new drugs, have been incorporated into the technology appraisal work programme of the National Institute for Health and Care Excellence.

In addition, NHS England has advised that for all of the indications covered by these newly licensed cancer drugs, there already exist treatment options for patients that are either funded from baseline commissioning or from the CDF.