NHS Digital Data Release Register - reformatted
Rod Gibson Associates Ltd
Project 1 — DARS-NIC-15402-M9L6Z
Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)
Sensitive: Non Sensitive
When: 2016/04 (or before) — 2018/12. breached contract (used DropBox) — audit report.
Legal basis: Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)
Categories: Anonymised - ICO code compliant
- Hospital Episode Statistics Admitted Patient Care
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 14 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. Purpose 3 To provide non-disclosive small number suppressed aggregate data on request to the following types of organisations: Higher Education Institution research departments, NHS Trusts, Department of Health, NHS England, National Institute for Health and Care Excellence, Care Quality Commission, NHS Clinical Commissioning Groups, National Audit Office, Office for National Statistics, Royal College of Paediatrics and Child Health, The Royal College of Midwives. Further objectives for processing arise because of RGA's widely recognised reputation, expertise and experience in maternity HES. RGA Ltd has invested heavily in designing cleaning algorithms for maternity HES which allows the calculation of many quantities which are not normally readably available. Example 1: To provide a research group from Guy’s and St Thomas’ NHS Trust non-disclosive aggregate numbers detailing the types of maternity outcome experienced by women who have previously denoted a kidney.
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."
Purpose 1 To continue providing aggregate maternity indicators for the “Which? Birth Choice” website www.which.co.uk/birth-choice . The application is for a renewal of data to update aggregate indicators which have already been processed and are available in the public domain on the “Which? Birth Choice” websites. If the data sharing agreement is not renewed, the benefits which have arisen over the previous years covered by the DRA will be lost. As this is a renewal, previous benefits should be considered. Typically the updated indicators would appear within 3 months of receiving the data. 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-centered maternity indicators has 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 fulfills this NICE recommendation. Several high profile endorsements of the service are given below. Professor Cathy Warwick, 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 (https://www.rcm.org.uk/which-birth-choice-website). Beverley Turner, Presenter on the 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 shows on its website:- http://thebirthandbabynetwork.com/labour-and-birth-2/which-birth-choice/ Purpose 2 To continue providing aggregate maternity indicators for the BirthChoiceUK website http://www.birthchoiceuk.com The application is for a renewal of data to update aggregate indicators which have already been processed and are available in the public domain on the BirthChoiceUK websites. If the data sharing agreement is not renewed, the benefits which have arisen over the previous years covered by the DRA will be lost. Benefits have been accumulating since the inception of the BirthChoiceUK website to present maternity statistics in an accessible form to health professionals and pregnant women, to help them make informed decisions about the most appropriate place to give birth. These benefits have increased since RGA Ltd were able to access individual patient HES maternity records to produce more relevant indicators. 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) The HSCIC’s own recently published compendium of maternity statistics (http://www.hscic.gov.uk/catalogue/PUB17333 ) 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 https://www.nice.org.uk/guidance/cg190/ifp/chapter/sources-of-advice-and-support 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 (p5, (http://www.statisticsauthority.gov.uk/assessment/monitoring/monitoring-reviews/monitoring-review-1-2014---official-statistics-on-patient-outcomes-in-england.pdf ) 4) The National Audit Office report (http://www.nao.org.uk/wp-content/uploads/2013/11/10259-001-Maternity-Services-Book-1.pdf ) 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) https://www.rcog.org.uk/globalassets/documents/guidelines/highqualitywomenshealthcareproposalforchange.pdf 5) The 'normal birth' indicator was developed using HES maternity data by RGA Ltd for use on the BirthChoiceUK website (http://www.birthchoiceuk.com/Professionals/NormalExplain.htm ) and was subsequently adopted by the Maternity Care Working Party in its consensus statement on Normal Birth (https://www.rcog.org.uk/en/guidelines-research-services/guidelines/making-normal-birth-a-reality) followed by the use of the normal birth indicator by the large NPEU-led Birthplace in England Study (http://www.bmj.com/content/343/bmj.d7400 ) 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 (http://www.birthchoiceuk.com/Professionals/AnalysingHESrecords.htm ) 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) http://www.journalslibrary.nihr.ac.uk/hsdr/volume-2/issue-38 . 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 Purpose 3 The benefits are diverse and varied but in total add to the accumulated knowledge base surrounding maternity issues. Benefits can be substantial. The ability for a research group to perform accurate statistical power calculation based on HES derived numbers can inform the group about the likely success and benefits of a clinical trial. Such knowledge can see a research proposal succeed and provide immeasurable future benefits or can prevent money being spent on research which retrospectively may be seen as unproductive. As well as RGA’s unique capability to stratify by obstetric risk and parity being of interest to research teams, it is of great interest to Clinical Commissioning Groups as these two factors are the largest drivers of variability in maternity care costs. At a time when there is concern about the use of confidential patient data, the success of these website and our work in helping women use nationally collated data also highlights the benefits HSCIC provides by way of routine data collection and analysis, and the importance of using data for improving decision-making and patient care.
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 and 2013/14 (data derived under Data Reuse Agreement with HSCIC (NIC-187150-Z2P3M-A1 and NIC-340660-Z7B8Y). 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 The aggregated numbers supplied in the output did not contain small numbers. Patient level data was not supplied or published in any output. b) Intended output for 2014/15 Aggregate indicators for 2014/15 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. Aggregated numbers in output will not contain small numbers. Patient level data will not be supplied or published in any output. Source information will include required wording from HSCIC. The target date is within three months of receiving the data from HSCIC. 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 HSCIC (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 HSCIC (previously NHS IC) under Data Reuse Agreement NIC-187150-Z2P3M-A1 and NIC-340660-Z7B8Y 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) The methodology used is published on the BirthChoiceUK website at http://www.birthchoiceuk.com/Professionals/AnalysingHESrecords.htm Historical date is also shown in tables and graphs. b) Intended outputs for 2014/15 Aggregate indicators for 2013/14 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 2014/15 to show time trends. Aggregated numbers in output will not contain small numbers. Patient level data will not be supplied or published in any output. Source information will include required wording from HSCIC. The target data is within three months of receiving the data from HSCIC. Purpose 3 To provide non-disclosive small number suppressed aggregate data on request to the restricted list of organisation types previously mentioned. Over the last fifteen years BirthChoiceUK has become known within the research community as a valuable source of maternity related statistics. We wish to continue to be able to provide this service to the maternity community. In such analyses care is taken not to release small numbers or implied small numbers that can be derived by differencing.
For all purposes 1-3 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 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.