NHS Digital Data Release Register - reformatted
Rod Gibson Associates Ltd projects
7 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
Project 1 — DARS-NIC-15402-M9L6Z
Type of data: information not disclosed for TRE projects
Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)
Purposes: ()
Sensitive: Non Sensitive
When:2018.03 — 2016.08. breached contract (used DropBox) — audit report.
Access method: One-Off
Data-controller type:
Sublicensing allowed:
Datasets:
- Hospital Episode Statistics Admitted Patient Care
Objectives:
This application is requesting to continue to hold the HES data previously disseminated under NIC-15402-M9L6Z and to request 2 additional years of the HES data for 2015/16 and 2016/17.
Purpose 1
To continue providing aggregate maternity indicators for the “Which? Birth Choice” website www.which.co.uk/birth-choice.
This website is owned by the consumer organisation “Which?” and is for pregnant women to help them find the right place to give birth. It was launched in January 2014. It displays maternity statistics in an easily accessible form to women to help them make a decision about who should provide their maternity care. As part of the information given to women, Rod Gibson Associates (RGA) Ltd supplies maternity statistics to “Which?”, under contract, for display on their website. This information is provided as a public service and is made available free of charge without the need for registration.
Purpose 2
To continue providing aggregate maternity indicators for the BirthChoiceUK website http://www.birthchoiceuk.com
This website is owned jointly by Rod Gibson Associates (RGA) Ltd and Miranda Dodwell, an individual lay maternity representative. The website has been in existence for 16 years, since June 2001, helping women choose where to have their baby. Since the launch of the “Which? Birth Choice” website, BirthChoiceUK has shifted its primary focus to providing easy access to maternity statistics to those informing women about their choices. It also provides more context about national and regional trends to childbirth educators, doulas and health professionals such as midwives. The website displays HES derived maternity statistics for each maternity unit. This information is provided as a public service and is made available free of charge without the need for registration.
Yielded Benefits:
The Which? Birth Choice website is currently attracting 75,000 unique visitors a month. In 2016 the site won the British Medical Association Patient Information Award for Decision Making. The judges commented: "'This is a great resource. The main information is really focused and tailored and provides good decision support around a challenging area for new mums in particular. It’s well-written and user-friendly, easy to navigate and find what you want. The information is very practical and helps users to think about what they want from their birth and how to prepare themselves. There are some good FAQs and expert advice and the information about different birthing centres is great. This really puts power in the hands of users and helps them make informed and evidence-based choices."
Expected Benefits:
Purpose 1
To continue providing aggregate maternity indicators for the “Which? Birth Choice” website www.which.co.uk/birth-choice.
Providing access to this data in an accessible format allows users to compare maternity services, make informed choices and manage expectations about their experience of maternity care, and thereby promotes health literacy.
The substantial investment in mobile friendly web development made by “Which?” coupled with Which’s reputation as a consumer champion has extended the reach of BirthChoiceUK’s earlier website. The novel and unique woman-centred maternity indicators have added to the appeal of the site which is being accessed by an ever growing audience. Combined figures for web traffic suggest current annual equivalents in the region of half a million visits. In 2014 a SEO report on the BirthChoiceUK website identified 1,300 backlinks (many of these links are from NHS trusts). The popularity of the Birth Choice websites is a clear indication that pregnant women also highly rate the importance of the decision on choice of place of birth.
The recent NICE Intrapartum Care Guidelines 2014 (http://www.nice.org.uk/guidance/cg190/chapter/1-recommendations#place-of-birth ) stress the importance of the decision on the choice of place of birth, including providing women with statistics about local birth settings. The information provided to “Which? Birth Choice” and the BirthChoiceUK website by RGA fulfils this NICE recommendation.
Several high profile endorsements of the service are given below.
The Chief Executive of the Royal College of Midwives explains on a video hosted on the RCM website the value of the personalised (stratified) statistics to women.
Radio 5 Live Bump Club said:-
"The wonderful people at Which Magazine have designed an incredible new resource for mums who are pondering their best options. It has a step-by-step guide based on your postcode. If you are pregnant you MUST try it (even if you’re not, it’s quite fun…)"
The Birth and Baby Network also recommends the Which? website on their website.
Purpose 2
To continue providing aggregate maternity indicators for the BirthChoiceUK website http://www.birthchoiceuk.com
The usefulness of the data produced by Rod Gibson Associates and published on both the “Which? Birth Choice” and the BirthChoiceUK websites has been recognised by many health organisations, patient organisations, health professionals and individuals.
1) NHS Digital’s own recently published compendium of maternity statistics includes the “Which? Birth Choice” website as one of the few non-NHS resources.
2) The BirthChoiceUK website is linked as a source of advice and support on the NICE website
3) The UK Statistics Authority Monitoring Review on Official Statistics on Patient Outcomes in England (Feb 2014) commended information on the BirthChoiceUK website as being a valuable support to the public.
4) The National Audit Office report used information produced by Rod Gibson Associates Ltd for the BirthChoiceUK website to map maternity units in England. The Royal College of Obstetricians also used information provided by Rod Gibson Associates in its document High Quality Women's Health Care: A proposal for change (2011).
5) The 'normal birth' indicator was developed using HES maternity data by RGA Ltd for use on the BirthChoiceUK website and was subsequently adopted by the Maternity Care Working Party in its consensus statement on Normal Birth followed by the use of the normal birth indicator by the large NPEU-led Birthplace in England Study to measure outcomes for women giving birth in different settings.
6) The development of aggregated maternity indicators stratified by parity and risk status by RGA and the subsequent further development of this methodology and use in the NIHR funded project 'The efficient use of the maternity workforces and implications for quality in maternity care: a population-based, cross-sectional study by Sandall et al (2014)'. This is the basis of stratified aggregated indicators supplied to “Which? Birth Choice”.
7) BirthChoiceUK has a long held reputation as a reliable source of statistics for health professionals. Examples of references to the BirthChoiceUK website as a source of data in midwifery books:
• Johnson R and Taylor W. (2010) Skills for Midwifery Practice
• Kirkham M (ed) (2010) The Midwife-Mother Relationship
• Scanlan S and Walker H (2014) Studying for your Midwifery Degree
• Chapman V and Charles C (2013) The Midwife's Labour and Birth Handbook
8) Many health and patient organisations link to both BirthChoiceUK and “Which? Birth Choice” to provide access about health information and maternity choices to pregnant women: For example:
• NHS Choices http://www.nhs.uk/conditions/pregnancy-and-baby/pages/where-can-i-give-birth.asp
• RCOG https://www.rcog.org.uk/en/patients/other-sources-of-help/
• National Child and Maternal Health Intelligence Network (Chimat) http://www.chimat.org.uk/resource/item.aspx?RID=186396
• Health Foundation http://personcentredcare.health.org.uk/resources/which-birth-choice
(listed under Tools to support patient decisions)
• National Childbirth Trust http://www.nct.org.uk/birth/choices-birth-your-area
• BabyCentre http://www.babycentre.co.uk/t25009159/find-the-right-place-to-give-birth
Outputs:
Outputs will be aggregated with small numbers suppressed in line with the HES analysis guide. Patient level data will not be supplied or published in any output. Source information will include required wording from NHS Digital.
Purpose 1
Aggregate maternity indicators for the “Which? Birth Choice” website www.which.co.uk/birth-choice
a) Outputs previously provided
• Aggregate indicators for each maternity unit in England for 2011/12 (available at the time of the launch of the website in January 2014). These included statistics stratified by obstetric risk and parity (number of previous babies).
• These were updated with data for 2012/13, 2013/14 and 2014/15 (data derived under Data Reuse Agreement with NHS Digital (NIC-187150-Z2P3M-A1, NIC-340660-Z7B8Y and NIC-15402-M9L6Z).
Other example indicators that appear on the “Which? Birth Choice” website are:
• First-time, low risk mothers who deliver with an intact perineum. (These stratified indicators can be viewed on the “Which? Birth Choice” website by using the interactive tool.)
• Emergency caesarean rates for women who labour.
The methodology used is published on the BirthChoiceUK website at http://www.birthchoiceuk.com/Professionals/AnalysingHESrecords.htm
b) Intended output for 2018
Aggregate indicators for 2015/16 and 2016/17 by maternity units and also stratified by parity and obstetric risk, to update the data previously supplied and currently displayed. These will be supplied to “Which?” under contractual arrangements for display on the “Which? Birth Choice” website where they can be accessed by pregnant women free of charge. “Which?” will pay a fee to RGA for the supply of the data.
The target date is June 2018.
Purpose 2
Aggregate indicators for the BirthChoiceUK website http://www.birthchoiceuk.com
a) Outputs previously provided
The BirthChoiceUK website has been displaying English maternity statistics produced by NHS Digital (and previously the NHS Information Centre, for data 1998 - 2004, Statistics Division 3G of the Department of Health) since 2001.
For data from 2010/11 onwards, maternity statistics displayed on the website have been derived from HES patient level data supplied by NHS Digital (previously NHS IC) under Data Sharing Agreement NIC-187150-Z2P3M-A1, NIC-340660-Z7B8Y and NIC-15402-M9L6Z.
Aggregate indicators currently available for each maternity site include:
• Number of births
• Caesarean rate
• Elective caesarean rates
• Emergency caesarean rate
• Instrumental delivery rate
• Forceps delivery rate
• Ventouse delivery rate
• Normal delivery (as defined by the Maternity Care Working Party consensus on normal birth)
Historical date is also shown in tables and graphs.
b) Intended outputs for 2018
Aggregate indicators for 2015/16 and 2016/17 to update the data previously supplied and currently displayed. These will be uploaded to the BirthChoiceUK website directly under the control of RGA where they can be accessed free of charge by those with an interest in tables/graphs of English maternity statistics.
Additional indicators intended to be supplied are maternity statistics stratified by parity and risk (as supplied to “Which? Birth Choice” under Purpose 1 above) and historical data 2000/01 to 2016/17 to show time trends.
Patient level data will not be supplied or published in any output. Source information will include required wording from NHS Digital.
The target data is June 2018.
Processing:
For both purposes 1 and 2
Patient level HES data will be processed on a single computer working in a secure environment at RGA secure premises and will only be accessible by the director of RGA Ltd, Rod Gibson. It will not be shared with any third party. Strict access controls apply to patient level data.
Only aggregated data (with small numbers suppressed in line with HES analyses guidance) will be shared with any third party. This applies to all data supplied and/or published, both internally and when compared to other published maternity statistics in accordance with the HES small numbers policy.
Obstetric risk factors become apparent at all ages and, as this is an on-going project scheduled to run for many years it is necessary to capture potential mothers so that their risk status can be accurately estimated.
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New records will be limited to females between the ages of 5 and 60 (using date of birth as this is better recorded than age in HES). The risk determination model is complicated and incorporates a number of ICD codes, making it not practical to pre-filter the data for ICD codes.
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Parity (the number of previous deliveries) is notoriously badly recorded in HES. As well as parity not being recorded by some NHS Trusts, other NHS Trusts mis-report it. As parity is an important driver of outcomes, it is necessary to estimate this quantity using all the available information. Algorithms are used which scan all of a woman’s delivery records looking for instances of properly recorded parity and other pointers like ICD codes indicating previous deliveries. Parity is then counted forward to provide an estimate for the current record. It is essential to have as much past data as possible to maximize the chances of capturing all of a woman’s previous delivery episodes.
The other big driver of outcome is pre-existing medical risk factors that cover both obstetric conditions like a previous stillbirth and non-obstetric factors like diabetes or heart conditions.
The primary source for this information is the ICD codes found in both a woman’s past and present delivery records along with her non-delivery inpatient records. All 12,000 ICD codes have been assigned a risk category which is used to assign a preliminary risk category to the woman. This can then be modified when viewed in conjunction with other information such as the OPCS procedure codes.
Some maternity medical conditions are relatively rare thus it is desirable to be able to interrogate many years’ worth of data to capture the maximum number of incidences. Other conditions are often associated with long time lags. For instance, perineal damage after having a baby can necessitate repair work many years or even decades later. Again, both of these requirements require long data runs, in addition it is also frequently desirable to be able to see how indicators change with time so as to be able to assess data quality.
It is necessary to search a woman's medical history to look for incidences of medical risk factors. Conditions can be apparent in childhood, for instance atrial septal defects are often detected and treated in early childhood. Similarly acute asthma is also likely to result in a hospital admission during childhood. As the commitment to the Which Birth Choice project is ongoing, this year's young female is a potential mother with an incidence of a risk factor recorded in HES.
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 ie: employees, agents and contractors of the Data Recipient who may have access to that data).
The data from NHS Digital will not be used for any other purpose other than that outlined in this Agreement.
The data from NHS Digital will not be linked to any other data.