NHS Digital Data Release Register - reformatted

Newcastle University

Project 1 — DARS-NIC-147745-KFJ4K

Opt outs honoured: N

Sensitive: Non Sensitive

When: 2017/09 — 2018/09.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 – s261(2)(c)

Categories: Identifiable

Datasets:

  • MRIS - Cohort Event Notification Report

Objectives:

The data supplied by the NHS IC to Newcastle University will be used only for the approved Medical Research Project identified above.


Project 2 — DARS-NIC-147852-RV70L

Opt outs honoured: Y, N, Yes - patient objections upheld (Section 251)

Sensitive: Sensitive, and Non Sensitive

When: 2016/04 (or before) — 2019/03.

Repeats: Ongoing

Legal basis: Section 251 approval is in place for the flow of identifiable data, Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, National Health Service Act 2006 - s251 - 'Control of patient information'. , Health and Social Care Act 2012 – s261(7)

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report
  • MRIS - Scottish NHS / Registration

Objectives:

Patients undergoing scanning by computed tomography (CT) are a subset of the population exposed to higher levels of radiation than background. In particular, children scanned using CT may have received high doses when compared to those from other diagnostic procedures involving radiation, such as X-rays. This is of concern as children are known to be at an increased susceptibility to the effects of radiation compared to adults. As yet, no studies have investigated the potential long-term risk from CT radiation exposure. Extrapolations have been used from the Japanese Atomic Bomb Survivor Study but this study will be the first to use empirical data. This study of medically irradiated patients is very relevant to a policy of understanding the health effects of ionising radiation. In particular, the Department of Health announced last year that COMARE should look at the benefits and risks of using CT scanning in preventative healthcare. They subsequently agreed to co-fund this study. Very little is currently known about the potential risks of CT in any population, other than from extrapolation studies. This study of a subset of the population, which is likely to show the greatest effect of radiation from CT, should there be one, will provide the information urgently required to allow guidelines to be developed for safe and more effective use of CT scans in children and young adults.


Project 3 — DARS-NIC-148021-GNMPC

Opt outs honoured: N

Sensitive: Sensitive, and Non Sensitive

When: 2016/04 (or before) — 2018/09.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 – s261(2)(c)

Categories: Identifiable

Datasets:

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

Objectives:

The data supplied by the NHSIC to Newcastle University will be used only for the approved Medical Research project MR87.


Project 4 — DARS-NIC-148471-FR43L

Opt outs honoured: No - consent provided by participants of research study (Consent (Reasonable Expectation))

Sensitive: Sensitive, and Non Sensitive

When: 2016/04 (or before) — 2019/04.

Repeats: Ongoing, One-Off

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 – s261(2)(c)

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report
  • MRIS - Members and Postings Report

Yielded Benefits:

Over 60 original articles have been published from the Newcastle 85+ study in peer reviewed journals, covering a wide range of health and social care issues in, a full list is available on the website - https://research.ncl.ac.uk/85plus/ Results have also been disseminated at public events and national and international conferences, where symposia have been held based on the study. Members of the team have used results from the study to contribute to policy:- House of Lords Select Committee on Demography 'Ready for Ageing' (2012) Dilnot Commission on UK care provision (2011). Findings from the Newcastle 85+ Study on levels of capability and dependency provided important data to inform the Commission's work. (Jagger C, Collerton JC, Davies K, et al. Capability and dependency in the Newcastle 85+ cohort study. Projections of future care needs. BMC Geriatrics 2011; 11.) Swedish Social Council review on healthy ageing Government review 2010) Why We Age – (2010) A road map for future research in ageing in Europe was generated. This is now under active dissemination (e.g. FUTUREAGE and WHYWEAGE European conference Brussels December 2010). Social Care Green Paper – Government review (2009). Invited to give oral evidence on drivers of healthy life expectancy in the UK and the impact on long term care to the Health Committee in connection with the Green Paper on Social Care funding reforms.

Objectives:

Aim The study will recruit a cohort of 800 individuals aged 85 and follow the over time until the last member of the cohort dies. To gain detailed information on the full spectrum of health among a population of 85+ year olds, and examine how a wide range of biological, medical and social factors are linked with individual trajectories of health over follow-up. The biological, medical and social factors which make the greatest contribution, alone or in combination, to the maintenance of health and independent living will then be identified.

Expected Benefits:

The Newcastle 85+ study cohort (born in 1921 and aged 85 at baseline) has been followed to age 97 years. One important finding has been uncovering how disability evolves between age 85 and 90. Understanding whether or how health trajectories change at advanced ages is paramount in the face of this growing population, and if researchers are to develop more effective and timely primary health and social care services; but few other studies include people aged 97. The study team hypothesise that demands on health and social care may increase in the tenth decade and levels of disability, cognitive impairment, multimorbidity, frailty and loneliness increase. Specific research questions include: (i) Confirming trajectories of disability and estimating years spent with disability and frailty between age 85 and 97, with the aim to identify potentially modifiable risk factors (ii) Identifying predictors of “healthy” ageing to age 97, (iii) Establishing how the demand on health and social care resources change between the ninth and tenth decade, particularly regarding informal care. Profiling current health and social care use (including informal unpaid care) will inform policy makers on how to optimally manage this age group. (iv) Determine late life factors influencing frailty, in particular cognition? (v) Exploring the levels of participation and loneliness and its link to health and social care usage. Addressing the above research questions will identify factors associated with declining health and increased usage of health and social care. The study team anticipate this information can contribute to the development of policies around optimising care in the very old age group to develop models of care that are both cost effective and efficient.

Outputs:

Those aged 85 and older are the fastest growing sector of the population. Some people age well, whereas others experience multiple health and social needs. Identifying why this heterogeneity exists and understanding which transitions from independence to dependence are malleable, is key to maintain wellbeing and reducing the burden on services; longitudinal observation is necessary. The Newcastle 85+ study was established in 2006 and is now nearing completion of the 10 year follow up, the participants now being 97 years of age. Few other studies include people aged 97. The study team hypothesise that demands on health and social care may increase in the tenth decade and levels of disability, cognitive impairment, multimorbidity, frailty and loneliness increase, therefore this data collection at aged 97 years is valuable. The study team specifically want to identify: (i) trajectories of disability and estimating years spent with disability and frailty between age 85 and 95, (ii) identify predictors of “healthy” ageing to age 97, (iii) Establish how health and social care resources change between the ninth and tenth decade, particularly regarding informal care, (iv) determine late life factors influencing frailty, in particular cognition, (v) Explore the levels of participation and loneliness. Much of this analysis will involve survival analysis, and hence, the mortality data remains a vital piece of information on participants in this cohort. Once data collection is complete and prepared for analysis the study team aim to publish outputs over the next 3 years (2018-2021). The study team continue to collaborate with researchers who wish to use some of the study data set and are establishing new international collaborations. These collaborations will include sharing outputs derived from NHS Digital, which will be aggregated with small numbers suppressed in line with the HES Analysis Guide. The Newcastle 85+ study is part of an international collaboration called TULIPS. This is a collaborative partnership between countries who have cohort studies of the very old and includes Japan (TOOTH study), Netherlands (Leiden 85+ study), New Zealand (LILACS) and United Kingdom (Newcastle 85+ study). This collaboration will maximise the use of data and increase understanding of international comparisons. Dissemination of results will be in a wide field due to on-going analysis in the fields of musculoskeletal medicine, nutrition, frailty, disability, polypharmacy, participation and loneliness. To date the study output dissemination strategy has been wide and includes the general public, academic researchers and those working in the NHS. Future dissemination will be undertaken in both the research and wider community to target older people and health and social care professionals. The study team will continue to involve the established public engagement group VOICE (Valuing Our Intellectual Capital Experience - https://www.voice-global.org/ ) and the lay representative on the study steering committee to help develop a dissemination strategy for a lay audience. Participant feedback will consist of an individual newsletter to all participants outlining the major findings of the study and the study team will highlight the work through newsletters and meetings in the voluntary sector. The study team has a track record of publishing in high quality peer reviewed journals and aims to publish in journals in the fields of ageing and primary care; subject-specific journals will be used where appropriate. The study team will identify those high ranking journals where their work will be of interest to the audience and have the most impact. Previously this has included the British Medical Journal (BMJ), Lancet, Age and Ageing, International Journal of Gerontology, Journal of the American Geriatrics Society, amongst others, and they will continue to target such journals. The study team will present at the major conferences in the field of primary care (Society of Academic Primary Care) and care of older people (British Geriatrics Society, International Association of Gerontology and Geriatrics) in order to disseminate the results to a wide audience. The study findings will be relevant to commissioners and policy makers who shape the future health and social care services for the very old and the study team will continue to aim to present to this audience.

Processing:

The University of Newcastle previously securely transferred files of identifiers for patients in the Newcastle 85+ Study (NHS Number, Date of birth, sex and postcode plus a unique study ID) to NHS Digital. NHS Digital returned linked Mortality data from 2008 data the unique study ID, Date of Death, Full Name, Date of Birth, Area, Occupation, Cause of death (words), Cause of Death(Code). NHS Digital have received the full study cohort and the study will not be adding any additional participants. On receipt of cohort linked data the Newcastle 85+ study research team undertake the following processing activities: The University of Newcastle stores the data obtained from NHS Digital on an encrypted secure area network and access is restricted to individuals working on the Newcastle 85+ study. Access to full death data obtained from NHS Digital is restricted to a Principal Investigator (PI) who receives the data and the research nurse who enters the data onto the database. Date of death, cause of death (Words), Cause of Death(Code) are added to the Newcastle 85+ study database which is encrypted. The database is pseudo-anonymised by unique study ID. Full patient information is kept on the patient Consent forms and patient lists which are kept within the locked filing cabinets within the Newcastle 85+ study office, access to the cabinets is only by the PI and research nurse. Upon completion of checks, an extract of identifiable data (Date of Death and Date of Birth) is taken from the Newcastle 85+ study database and linked to fields from the cohort linked data to calculate variables such as exact age at interview, survival time from first interview, length of survival from diagnosis, total length of follow-up if such variables are relevant to specific research questions. Specific date of death will not be shared with Newcastle University researchers; instead date of first interview (baseline recruitment to study) is shared, and month and year of death. Researchers who are not substantively employed by Newcastle University may work in collaboration with the study team but would only have access to outputs, which would be aggregated with small numbers suppressed in line with the HES Analysis Guide. If a researcher from another organisation wishes to access record level NHS Digital Data then an amendment application will be submitted to update the data sharing agreement with NHS Digital to include any new collaborations prior to them receiving the data. The Newcastle University study team access data via a secure server and they are granted access after they successfully complete training. They must work on the data in that location and any output must be saved back to that location. They are instructed that no copies of the data are to be taken and placed in any other locations. Summaries of the results will be presented orally at conferences and are intended to be published in academic or medical journals. All outputs will be aggregated with small numbers suppressed and in line with the HES Analysis Guide. The Newcastle 85+ study is one of the largest cohorts of the "very old" in the United Kingdom and is now in its 10th year of follow-up. Throughout the study data regarding mortality has been received from NHS Digital. Additionally, detailed information over a 10 year period regarding health and social care issues has been collected. The combination of this data will now allow the study to map in more detail mortality in this very old age group and identify what factors are associated with healthy ageing. Additionally, the mortality data will be used for further analyses of mortality, often in conjunction with other outcomes e.g. disability, frailty. Continued receipt of mortality data will be extremely helpful in order to profile this population further. Very few studies have information on people of this age, and the mortality data will become increasingly important for future analyses.


Project 5 — DARS-NIC-31911-S3Y6M

Opt outs honoured: N

Sensitive: Non Sensitive

When: 2017/12 — 2018/09.

Repeats: Ongoing

Legal basis: Section 251 approval is in place for the flow of identifiable data, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • MRIS - Bespoke

Objectives:

What organisation instigated the work and why? This project was instigated by researchers at Newcastle University to address the paucity of information on long-term survival of individuals born with congenital heart disease (CHD). This information can be used for counselling parents when a diagnosis of CHD is made either prenatally or postnatally. Additionally the information can be used to calculate estimates of the number of individuals living with CHD, which is important for health care commissioning. How are other organisations involved? Why? The data being requested is to be linked to death registrations is collected by congenital anomaly registries. Data will be sent from these registries to NHS Digital to be linked with death registrations. The data will then be sent to Public Health England Northern Office (which houses the congenital anomaly register covering the North of England), where it will be analysed by an employee of Newcastle University who has an honorary contract with PHE. Which organisations will have access to the record level data supplied by NHS Digital? Only the two listed ONS users will have access to the data when it is stored at the PHE Northern Office. How was this work instigated? This project was originally funded by British Heart Foundation as part of a PhD. However, due to the extreme delays in obtaining the data the PhD has been finished (Oct 2015) and the project is now being funded by a Newcastle University Faculty Fellowship. Aim The aim of this study is to produce robust survival estimates, up to 25 years, for children born with congenital heart disease (CHD) between 1985-2012 in England and Wales. A further objective is to identify predictors of long-term survival of children born with CHD. This application is to link together data on cases of CHD notified to six congenital anomaly registers to death registrations, using several patient identifiable variable. Using the death registrations, NHS Digital will add the following variables to the data sets: survival status (alive/ deceased), year of death, number of days survived. Public Health England (PHE) also request that NHS Digital add IMD score at delivery to the dataset so that we can examine socioeconomic inequalities in CHD survival. What does the work aim to achieve With advances in surgical and medical techniques, survival of individuals with CHD has increased dramatically over the last 20 to 30 years. However, there is a paucity of information on CHD survival. This information is useful for counselling parents when a diagnosis of CHD is made prenatally or postnatally. This information can also be used to estimate the number of individuals living with CHD in the UK, which can aid health service commissioning. Background PHE originally applied to complete this data linkage in 2013. However, we have not yet received any data. The objectives remain the same as in our original agreement. The applicant requires NHS Digital to link in death registrations using the following patient identifiable variables: Name, Address, sex, maternal age. The applicant also requires NHS Digital to provide Index of Multiple Deprivation scores and ranks for each case (based on postcode).

Expected Benefits:

Children with CHD require highly specialised healthcare, and it is important that health services are in place to address this. Robust estimates of prevalence and the long-term survival of CHD are required to accurately plan for the provision of health care and range of services required by these children in the future. However, very few studies have reported the long-term survival of children born with CHD. This research will be of benefit not only to support planning and administration of the provision made for health and social care for pregnancies and infants affected by congenital anomalies, but the information on long-term survival is also important for health professionals who need these statistics to counsel parents when their child is diagnosed with CHD. This information is also important for parents, particularly when a diagnosis of CHD is made prenatally.

Outputs:

In order to inform parents and clinicians, the applicant intends to present the outputs to and liaise with the British Congenital Cardiac Association, which is affiliated with the British Cardiovascular Society. The results will be presented at Epidemiology and perinatal medicine conferences (such as Society for Pediatric and Perinatal Epidemiologic Research and Society for Social Medicine). They will also be published in peer reviewed medical journals such as Circulation. A summary of the results will be put on the BINOCAR website http://www.binocar.org/. The results will be analysed within the first year after the data is received. The data will be kept for three years. All outputs stated here will be aggregated where there are less than five cases in order to ensure anonymity. All outputs are aggregated with small number suppression in line with the HES Analysis Guide.

Processing:

Data from the 6 different Congenital anomaly registers (CARs) centres – Northern Congenital abnormality survey, East Midlands and South Yorkshire CAR, CAR and information service for Wales, CAR for Oxfordshire, Berkshire and Buckinghamshire, South West CAR, Wessex antenatal detected anomalies register- has been securely transferred to NHS Digital. The data from each register contained information on all children born with a CHD in their region. Each case had data on the following variables: ID no, infant forename and surname, postcode at delivery, mothers age at delivery, sex, number of foetuses, date of birth, gestational age at delivery (weeks), birth weight, ethnicity, register, antenatal diagnosis (ICD codes and text), postnatal diagnosis (ICD codes and text). Babies have been matched and NHS Digital has calculated the number of days the baby survived and recoded postcode into IMD. NHS Digital has removed infant forename, surname and postcode and recoded date of birth/death into year of birth/death only. The data is therefore pseudonymised. The pseudonymised data set will be securely sent to the Regional Maternity Survey Office, Public Health England (now known as the NCARDRS PHE Northern Office) where it will be stored on a password protected computer and analysed by the applicant. Of the three users who will have access to the data one is employed by PHE, while two are employed by Newcastle University but hold honorary contracts at PHE. All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data). PHE Northern Office stores the data on a server which can only be accessed at the PHE Northern Office. This data is stored in a separate location to the participant identifiers. The two datasets will not be re-linked and the data will remain pseudonymised. Data will only be accessed by individuals within the PHE Northern Office who have authorisation from CAG to access the data for the purpose described, all of whom are substantive employees or hold honorary contracts at PHE. The ONS user at NCARDRS North will use Kaplan-Meier curves to estimate survival at age: one, five, ten and twenty of children born with any CHD. Similarly they will use Kaplan-Meier curves to estimate survival of CHD subtypes separately, as these vary in severity. Additionally, the NCARDRS North will use the demographic data collected by the BINOCAR (including maternal age, gestational age at delivery, birth weight, sex, index of multiple deprivation) to investigate predictors of survival. This will involve the use of Cox regression, and also use modelling to predict survival in the future.