NHS Digital Data Release Register - reformatted

University College London Hospitals NHS Foundation Trust

Project 1 — DARS-NIC-148324-V6WWJ

Opt outs honoured: N

Sensitive: Sensitive, and Non Sensitive

When: 2016/09 — 2016/11. SMLS reported a DPA serious incident; breached contract — audit report.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report

Objectives:

The aim of the study is to establish the value of microbleeds (MB) and genetic factors in predicting symptomatic ICH following anticoagulation to prevent recurrent ischaemic stroke due to AF.


Project 2 — DARS-NIC-384137-V8F6H

Opt outs honoured: Y

Sensitive: Sensitive, and Non Sensitive

When: 2016/09 — 2016/11. SMLS reported a DPA serious incident; breached contract — audit report.

Repeats: One-Off

Legal basis: Section 251 approval is in place for the flow of identifiable data

Categories: Identifiable

Datasets:

  • Hospital Episode Statistics Outpatients
  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Admitted Patient Care

Benefits:

UCLH are determining whether there is a benefit to TYA patients from specialist services and if so, where that benefit lies. UCLH will for the first time calculate the cost effectiveness of a specialist service. The information about costs of TYA services will be informative of the costs and cost effectiveness of specialist services for other uncommon conditions. The NICE 2014 review of Improving Outcome Guidance (2005) which detailed how services should be provided for this population, has concluded that no update of this guidance can be made until BRIGHTLIGHT is complete. The future of TYA cancer services therefore depends on the study being conducted according to the protocol.

Outputs:

The outputs listed below will be presented at the following conferences- Teenage Cancer Trust (TCT) International Cancer conferences, National Cancer Intelligence Network (NCIN) and International Society for Paediatric Oncology (SIOP) annual conference, National Cancer research Institute (NCRI) annual conference (Oct 2017). There is a conference planned for 2017/18, Find your sense of tumor. The outputs are also included in the NIHR Annual report and available on BRIGHTLIGHT website. Outputs will involve - 1) a study specific measure of specialist care (April 2016) for each individual cancer patient, 2) research articles in peer review journals (anticipated journals include Lancet Oncology, British Journal of Cancer, European Journal of Cancer (Dec 2017), 3) patient newsletters 4) funding reports to the NIHR (Dec 2017). 5) Assessment of what proportion of the TYA cancer population received care at specialist centres between 2012-2014 and whether there was equitable access according to socio-demographic characteristics, e.g. socioeconomic group, ethnic group (Dec 2016); 6) Determine the benefit to patients receiving care at specialist TYA units in comparison to those who received care at general cancer units through evaluation of quality of life measures; 7) Assess the cost-effectiveness of specialist TYA care compared to other models of care. Other models of care will be general adult care and cancer-specific centres (e.g. bone, sarcoma). All outputs will be aggregate level with small numbers suppressed in line with the HES analysis guide.

Processing:

Each study participant will have linked in-patient (including day case) HES admissions data recording their NHS number, HES_ID, episode start and end dates, episode order, consultant code, and provider code. HES data will also be linked to the scores on the EQ5D, a health status utility score, to enable health economic analysis to be calculated. This will also be undertaken at University College London (UCL). UCLH will provide the HSCIC with study ID, NHS number and date of birth for linkage to HES. The HSCIC will provide the linkage to HES APC, OP and A&E. HES cleaning will then be undertaken by UCL to ensure no duplicate episodes, no multiple admissions less than 2 days apart with the same HES_ID, no admission entries allowed after date of death (if deceased); admissions limited to any occurring from and which overlap the date of diagnosis. Consultant and provider codes will be checked and linked against a TYA lookup database compiled by the BRIGHTLIGHT study team, and each episode coded as TYA or not. This will be repeated for any site specialist care. Once the data is received by UCLH, UCLH will use the data to produce look up tables and lists of hospitals that provide specific specialist services. The data along with a hospital code will be sent to UCL to process. The outputs will not identify at individual hospital level, the outputs will identify the specialist service as a whole. The look-up tables and lists of hospitals that provide TYA and tumour-specific specialist care will be compiled from knowledge of current service configuration. After this has been checked by key professionals working within cancer services in England, this information, with hospital/Trust code, will be sent to UCL to link to HES data. The outputs will not identify outcomes at individual hospital level, the outputs will identify the specialist service as a whole. Overall and TYA/site specific in-patient activity will be calculated for each participant by aggregating length of stay across all episodes extending up to 6 months after diagnosis. All data will be processed within the Department of Applied Health Research, University College London and University College London Hospitals NHS Foundation Trust . All individuals with access to the data are employed by UCL or UCLH no other third party will have access to the data.

Objectives:

UPDATE NOTE: This is a minor update to a previous HES extract in order to rerun the linkage and 1) obtain the 3 and 5 digit provider codes, 2) include amended details for 37 individuals for whom no linkage match could be found in the previous run. ****************************************************************************************************************** Cancer is the second leading cause of death for young people accounting for 11% of deaths in Teenagers and young adults (TYA) aged 15-24 . While potentially curable for many patients, there is evidence that outcomes for some cancers have not improved in line with those achieved for children and older adults. The needs of TYA are poorly met by the well-developed cancer services traditionally tailored towards the needs of children and those for older adults with cancer. A number of issues advocate special attention for young people with cancer and there is a critical need for a robust evidence base to support current and future health care policies. For example, a unique spectrum of cancer types occur in TYA which are distinct from those affecting younger children and older adults. A cancer diagnosis in TYA has an acute and unique impact on a critical and complex stage of life development, disrupting physical health, social and educational goals as well as psychological wellbeing. Concern has arisen that traditional cancer services are insufficient for TYA. Young people frequently fall between children’s and adult cancer services, into what has been described as 'the grey zone' or 'no man's land'. The consequence of this is realised when lesser improvements in outcomes for young people are observed compared to children and some older adult cancers. There are several potential causes of the shortfall in outcome (survival) improvements which include but are not limited to: • delays in cancer diagnosis; • unfavourable tumour biology as increasing age; • inconsistent use of molecular diagnostics that may be central to optimal care; • limited access to clinical trials; • lack of concordance with treatment protocols; and • a lack of specialist supportive care. Young people themselves describe unsatisfactory experiences of care which include: • lack of recognition of their autonomy; • failure to maintain their need to continue to meet normal life goals during treatment; • lack of peer support; • care by staff with little experience of young people; and • inappropriate care environments. Psychosocial and healthcare needs of this specific population is increasingly highlighted in the international literature. Place of treatment and cancer care, in terms of both disease and age appropriate specialist settings is increasingly acknowledged as potentially significant to the outcome for TYAs with cancer . In recent years there has been a rapid expansion in the availability of dedicated services for TYA in the UK. It is now accepted that young people should have access to specialist cancer care. Thirteen principal treatment centres are currently in place. Key components of services include tumour site-specific expertise delivered in conjunction with meeting the broader psychosocial needs of young people to support successful navigation of critical life transitions. The NICE Improving Outcomes Guidance does not direct that care of all 13-24 year olds will take place in specialist centres. Instead, it recommended that all patients aged less than 19 years are referred to principal treatment centres for their treatment. Those 19 years and over should be offered 'unhindered access to age-appropriate care'. This division resulted from: a requirement to be consistent with the National Service Framework for Children and Maternity Services; and in recognition of the heterogeneity of medical and personal need in older young people; and finally, an acknowledgment that there was insufficient persuasive evidence to mandate a greater degree of centralisation of care. Thus, 19-24 year olds should be offered choice of place of care, either referral to principal treatment centres or more local, adult cancer services. Initiatives to support information giving to assist young people to decide on a place of care have begun but their effectiveness is as yet unknown (www.nhs.uk/young-cancer-care/pages/cancer-care-choices.aspx). Other settings of non-specialist care include 'shared care centres', usually the closest local hospital to an individual patient’s home, where management of acute complications of treatment, and other aspects of care, may occur either in children’s or adult services. University College London Hospitals NHS Foundation Trust (UCLH) requires HES data in order to derive a measure of specialist care for the BRIGHTLIGHT teenage and young adult (TYA) cancer cohort study, specifically the proportion of overall hospital care taking place in dedicated teenage cancer centres or specialist cancer centres within the first 6 months of diagnosis. This information will then be used to evaluate the added benefit to patients of being treated at a specialist unit in relation to their general health and wellbeing, and the cost-effectiveness of specialist care in comparison to other types of cancer care.