NHS Digital Data Release Register - reformatted

Ucl Institute Of Education (ioe) projects

38 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

🚩 Ucl Institute Of Education (ioe) was sent multiple files from the same dataset, in the same month, both with optouts respected and with optouts ignored. Ucl Institute Of Education (ioe) may not have compared the two files, but the identifiers are consistent between datasets, and outside of a good TRE NHS Digital can not know what recipients actually do.

MR358 - NATIONAL CHILD DEVELOPMENT STUDY 1958 COHORT — DARS-NIC-147922-T7W2F

Type of data: information not disclosed for TRE projects

Opt outs honoured: Yes - patient objections upheld, N, Identifiable, Yes

Legal basis: Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007 , Section 251 approval is in place for the flow of identifiable data, National Health Service Act 2006 - s251 - 'Control of patient information'. , Health and Social Care Act 2012 – s261(7), Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007, National Health Service Act 2006 - s251 - 'Control of patient information'.,

Purposes: No (Academic)

Sensitive: Sensitive, and Non Sensitive, and Non-Sensitive

When:DSA runs 2011-11-30 — 2026-11-30 2016.06 — 2020.03.

Access method: Ongoing

Data-controller type: UNIVERSITY COLLEGE LONDON (UCL)

Sublicensing allowed: No

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report
  3. MRIS - Scottish NHS / Registration
  4. MRIS - Flagging Current Status Report
  5. MRIS - Members and Postings Report
  6. MRIS - Personal Demographics Service

Objectives:

British Cohort Study 1970 (BCS70) is a national longitudinal study which provides the medical and social science community with a set of data comprising information about the lives of its cohort members and their parents. This data set can be used to investigate factors which influence physical, psychological, educational and social development and outcomes.

Since 1970, there have been three subsequent attempts to gather information from the full cohort. With each successive attempt, the scope of enquiry has broadened from a strictly medical focus at birth, to encompass physical and educational development at the ages of ten and sixteen.

Aims and Investigations

1) To monitor child development educational, physical and psychological in the 1970s, in comparison with those made by the two previous surveys during the 1950s and 1960s. There is a desirability of further study of early hospitalisation, e.g. maternal employment, immunisation and vaccination, housing conditions.

2) To analyse via in-depth studies, with comparison of special groups from the 1958 Study, involving 'deprived' children or children in anomalous family situations e.g. children in care, illegitimate, fostered, from one-parent families, or socially disadvantaged.

3) To examine associations between high-risk medical and social factors in the perinatal period and subsequent child development, e.g. smoking in pregnancy, X-rays etc. This type of analysis, as in any longitudinal investigation, involves gathering data on a large range of 'intermediate variables', both social and environmental, which might affect both the 'casual' factor and the outcome.

4) To identify special groups in childhood who fail to use the services provided by DHSS and DES e.g. schooling, health centres, dental care, speech therapy, etc. and the availability of these services to children in different areas, e.g. urban/rural districts.

5) To analyse regional variations in many factors on which data are available. The needs of pre-school children, for example, may vary from one region to the next on account of differences in the degree of urbanisation, level and type of industrialisation, family incomes, educational and housing policies, etc. This type of information would be of great value in the administrative and policy-making areas of local government.

MR737 - ESRC MILLENNIUM COHORT STUDY (MCS) child of the new century — DARS-NIC-147860-0RSHN

Type of data: information not disclosed for TRE projects

Opt outs honoured: N, Yes - patient objections upheld, Y, Identifiable, Yes

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 – s261(7), , Informed Patient consent to permit the receipt, processing and release of data by NHS Digital, Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'.; Other-National Health Service Act 2006 - s251 - 'Control of patient information'. ,, Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'. ; Other-National Health Service Act 2006 - s251 - 'Control of patient information'. ,, Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'. ; Other-National Health Service Act 2006 - s251 - 'Control of patient information'. ,

Purposes: No (Academic)

Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive

When:DSA runs 2011-11-30 — 2026-11-30 2016.04 — 2019.07.

Access method: Ongoing, One-Off

Data-controller type: UNIVERSITY OF LONDON (UOL), UNIVERSITY COLLEGE LONDON (UCL)

Sublicensing allowed: No

Datasets:

  1. MRIS - Scottish NHS / Registration
  2. MRIS - Cause of Death Report
  3. MRIS - Cohort Event Notification Report
  4. MRIS - Flagging Current Status Report
  5. MRIS - Members and Postings Report
  6. MRIS - Personal Demographics Service
  7. Civil Registration - Deaths
  8. Demographics
  9. Civil Registrations of Death

Objectives:

ESRC Millennium Cohort Study (MCS) Child of the New CenturyA longitudinal cohort study involving parental interviews of participating babies, when the baby was about 9-10 months old.  The main aim is to lay the foundations of a multi-purpose dataset to be used into the future by the researchers.  In the short term, it will enable a national study of the childhood in the first years of the new Millennium.The objectives are to:1) Chart the initial conditions of social, economic and health advantages and disadvantages facing new children in the new century, capturing information that the research community of the future will require.2) Provide a basis for comparing patterns of development with that of members of the preceding cohorts.3) Collect information on previously neglected topics, such as father's involvement in the children's care and development.4) Focus on the children's parents as the mist immediate elements of the child's 'background', charting their experience as mothers and fathers of this year's babies, to record how they (and any other children in the family) are adapting to the newcomer, and what their aspirations for his/her future may be.5) Establish intergenerational links including those back to the parent's own childhood.6) Investigate the wider social ecology of the family including, social networks, civic engagement and community facilities and services, splicing in geo-coded data when available.7) Improve the quality and completeness of the health data and linkage on pregnancy and birth by collecting information available on hospital records and birth registrations.  Assessing the health and other outcomes of recruited individuals over a life-long period in relation to the social, health and clinical conditions identified around and at the time of birth.

Project 3 — DARS-NIC-371228-Y7S6S

Type of data: information not disclosed for TRE projects

Opt outs honoured: N

Legal basis: Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007

Purposes: ()

Sensitive: Sensitive, and Non Sensitive

When:2016.04 — 2016.08.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report
  3. MRIS - Scottish NHS / Registration

Objectives:

The 1970 British Cohort Study (BCS70) is the third of Britain’s world renowned national longitudinal birth cohort studies. It follows all those born in a particular week in 1970 throughout their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on.

The study is run by the Centre for Longitudinal Studies (CLS), at the Institute of Education, University of London and funded by the Economic and Social Research Council.
Since 1970 there have been eight attempts to gather information from the whole cohort. Over time, the scope of enquiry has broadened from a medical focus at birth, to encompass physical and educational development at the age of five, physical, educational and social development at the ages of ten and sixteen, and then to include economic development and other wider factors at ages 26, 30, 34, 38 and 42. Future sweeps of the study will take place every 5 years.
The ongoing success of the study depends on maintaining contact with as many study members as possible.
The aim is to trace as many study members as possible in advance of the next wave of fieldwork.
CLS will supply the HSCIC with a file of study members and their last known address, extracted from the Centre for Longitudinal Studies (CLS) address database. CLS ask that these details are matched with NHS Registration Data and registered addresses supplied, where available.
The data supplied will be entered into the CLS secure address database and used to maintain contact with study members. Matched individuals will be contacted and invited to continue participating in the study. On making contact it will be made explicitly clear that they can informCLS that they no longer wish to participate in the study and they will not be contacted again.

Expected Benefits:

The 1970 British Cohort Study is the third of Britain’s world renowned national longitudinal birth cohort studies. Each follows a large sample of individuals born over a limited period of time through the course of their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on. They show how histories of health, wealth, education, family and employment are interwoven for individuals and vary between them.
The study has its origins in the British Births Survey in which information was gathered about almost 17,500 babies. The original study focused on the circumstances and outcomes of birth but since then the study has broadened in scope to map all aspects of health, education, social and economic development. Forthcoming sweeps will provide an updated picture of the circumstances and experiences of those born in the early seventies in England, Scotland and Wales and will help develop an understanding of their progress into the latter period of their lives.
The data collected by the study is used extensively by researchers in the UK and elsewhere and has had much impact on policy over the years, for example the Welsh Government policy on early years planning - http://www.closer.ac.uk/news-opinion/2013/welsh-governments-early-years-childcare-plan-draws-evidence/The continuing success of the study will be underpinned by the successful matching of untraced cases.

Outputs:

There have been hundreds of published journal articles, books, chapters, reports or conference presentations based on data from the 1970 British Cohort Study, details can be found at the CLS website - http://www.cls.ioe.ac.uk/Publications.aspx?sitesectionid=1145&sitesectiontitle=Briefings+and+case+studies
On receipt of the data, CLS will process the files and load more recent addresses to our database. CLS will also contact these cohort members to invite them to continue to participate in the study. It will be made explicitly clear to study members that they can withdraw from the study if they no longer wish to participate.
Participant contact information is held in a secure address database at the Centre for Longitudinal Studies. Any participants choosing not to take part in the study are flagged on this database with a code denoting whether their refusal is temporary (i.e. to a particular wave of data collection) or permanent (i.e. they wish to have no further involvement in the study). Anonymised survey data and confidential data from the address database are retained unless the participant specifically asks us not to, in which cases this data is deleted.

Processing:

ACTIVITY 1. NHS address tracing. CLS wish to use the HSCIC patient status and tracking products which uses NHS registration data to trace as many study members as possible, either by finding new address details or verifying existing address details for the cohort.
1.1 CLS supply the HSCIC with a file of around 1500 ‘untraced’ cohort members to match to the NHS data. The file supplied will only contain eligible study members who have participated in at least one wave of BCS70. It will not include study members known to have died or to have withdrawn from the study. The file will contain the following data items:
- CLS identifier,
- First name,
- Last name,
- Middle name (where available),
- Date of birth,
- Sex,
- Last known address, and postcode,
NHS numbers (where held).
1.2 CLS want all 1500 cases to be sent for auto-matching.
1.3 Those not matched via auto-matching should be operator matched.
1.4. The HSCIC would supply the following details to CLS.
- CLS identifier,
- Latest surname,
- Latest forename,
- Latest middle name (where available),
- Date of birth,
- Gender,
- Latest address and postcode,
- Fact of Death
- Date of address registration or update.
- Cause of Death
In addition to the receipt of any 'new' matched address information for our cohort members, CLS would like HSCIC to add an additional variable that describes the outcome of the matching process to the data that is returned to us. This additional variable will allocate each cohort member to one of the following three categories:
• new/different address found,
• existing address confirmed,
• no match found