Category: Projects

Using patient information

How will this be operated?

Getting It Right First Time (GIRFT) is a national programme designed to improve care for patients within the NHS, by reducing unwarranted variations. Our evaluation of the NHS Getting it Right First Time programme could not happen without access to patients’ data and this will play a vital role in our ability to get a picture of how the programme is working and the difference it is making to patient care. We want to be clear about how your data is stored, used and protected in our research. One aspect of this study looks at ‘what works and at what cost?’

We are trying to look at whether the Getting it Right First Time programme in orthopaedic surgery has reduced variations in orthopaedic practice and costs, and improved outcomes for patients. To do this, we are requesting confidential patient data for a group of patients who have undergone elective orthopaedic surgery between 1st April 2009 and 31st March 2018.

The data we would like to use include Hospital Episode Statistics (HES), a database containing details of all admissions to NHS hospitals in England, which is collected so that hospitals can be paid for the care they deliver. We would also like to include Patient Reported Outcome Measures (PROMs) for patients who have had hip or knee replacements. NHS patients who have had these procedures have been invited to fill in Patient Reported Outcome Measures (PROMs) questionnaires as part of the Department of Health’s PROMs programme. The NHS asks patients about their health and quality of life before they have their operation, and about their health and the effectiveness of the operation afterwards at six months. These data can also be processed and used for other purposes, such as research and planning health services. We would also like to use data from the National Joint Registry (NJR). The NJR was set up by the Department of Health to collect information on all hip, knee, ankle, elbow and shoulder replacement operations across the NHS, to make sure joint replacement implants were working and to also ensure the different types of surgery for these operations were safe and effective.

Secure storage and processing of patient information

This study has already received research ethics approval – a process designed to make sure researchers’ can benefit from accessing data while minimising risk of any harm to patients – and Health Research Authority Confidential Advisory Group Section 2.51 approvals. The legal basis for processing are covered under Article 6 (1) (e) and Article 9 (2) (j).

Personal data of patients – including NHS number, date of birth, sex, postcode and the study ID will only be securely transferred between two organisations – Northgate Public Services (who control NJR data) and NHS Digital (who control HES and PROMs data). This is considered to be personal data according to European data protection rules – the General Data Protection Regulation (or GDPR). As these two organisations currently hold the data, and are involved in processing, they are called data processors. The purpose of sending this personal data between the two organisations is so NHS Digital can link these data together for the same patients, to provide more accurate and complete information for researchers who can track a patient’s journey through the NHS system. However, researchers will not have access to any personal identifiable data, and will not be able to identify patients, using the information that they are given by the two organisations (Northgate Public Services and NHS Digital).

Both organisations will securely transfer pseudonymised data to researchers at UCL. Pseudonymisation means the most identifying fields within a database are replaced with artificial identifiers, or pseudonyms so patient information can be processed without researchers being able to identify patients. This means that UCL will be the final and only data controller for the data that is disseminated for the purposes of looking at ‘what works and at what cost?’ UCL will determine the purposes for which and the manner in which any personal data are to be processed. All pseudonymised patient information will be stored on a secure network that is password-protected and can only be accessed by those with specialised training and access for the duration of the study.

The data will be stored by researchers at UCL until 2021 for analysis and dissemination purposes, and thereafter will be securely destroyed.

UCL Data Protection:

UCL is required by law to comply with data protection legislation. The UK’s regulator for the legislation is the Information Commissioner’s Office.  It is the commitment of the university to ensure that every current employee and registered student complies with this Act to ensure the confidentiality of any personal data held by UCL, in whatever medium. This Act came into force on 25 May 2018.

UCL processes the personal data of living individuals such as its staff, students, contractors, research subjects and customers. UCL has a data protection policy as a commitment to the safeguarding of personal data processed by its staff and students, and to ensure compliance with the legislation. It is the duty of data controllers such as UCL to comply with the data protection principles with respect to personal data.  This policy describes how UCL will discharge its duties in order to ensure continuing compliance with the Act in general and the data protection principles and rights of data subjects in particular.

Data Protection Officer Contact details:

Stephanie Hume
Research Department Administrator
PA to Professor Rosalind Raine and Professor Naomi Fulop
Department of Applied Health Research, UCL
Visiting Address: 1-19 Torrington Place, London WC1E 7HB, Rm 112
Postal Address: UCL, Gower Street, London WC1E 6BT
Tel: 020 3108 3269
E-mail: stephanie.hume@ucl.ac.uk

Opting-out

We are happy to discuss your rights to protect your data, and how exactly it will be used in our research. If you would like further information about the use of your data in this research study, or would like to lodge a complaint to a supervisory authority – please contact us on the details given below. If you would like to request that your confidential patient information is not included in this study, please aim to contact us between 1st May – 24th August 2018 to discuss.

Contact details:
Dr Sarah Jasim
NIHR CLAHRC North Thames
Department of Applied Health Research
University College London
1-19 Torrington Place
London WC1E 7HB
Tel: 020 3105 3233
E-mail: clahrc.girft-evaluation@ucl.ac.uk

There are big variations in care for people receiving orthopedic services in the NHS –  orthopedics covers conditions involving the musculoskeletal system including hip and knee replacement surgery. We are evaluating the Getting it Right First Time programme – or GIRFT – which aims to improve services and make sure people get more consistent care across the whole NHS.

Part of our evaluation involves asking two sets of people –

i) patients over 60 who have had orthopaedic surgery in the last two years
and
ii) people over 60 

about their views on orthopaedic surgery and improving outcomes.

We’re running focus groups in April and May at the UCL Farr Institute

UCL Farr Institute, 222 Euston Road, London, NW1 2DA

i) People who have had a hip or knee replacement in a NHS hospital within the last two years Aged over 60

ii) People over 60

Contacts to register your interest are below –

Dr Jean Ledger: j.ledger@ucl.ac.uk or 020 7679 2000 / x53274
Dr Sarah Jasim: sarah.jasim@ucl.ac.uk or 020 7679 2000 / x53233

The findings of the joint CLAHRC West and CLAHRC North Thames study of the IRIS ADViSE pilot, which aimed to improve sexual health professionals’ response to women who have experienced domestic violence, are now available as a CLAHRC BITE.

Women who have experienced domestic violence and abuse (DVA) are three times more likely to have gynaecological and sexual health problems such as sexually transmitted infections, urinary tract infections and unintended pregnancy. Forty-seven per cent of women attending sexual health services will have experienced DVA at some point in their lives.

These services can be the first point of contact for women who have experienced DVA, so sexual health practitioners can have a key role in supporting women to access advocacy services. But most sexual health professionals haven’t had much training in identifying and responding to DVA, despite National Institute for Health and Care Excellence (NICE) recommendations.

The IRIS (Identification and Referral to Improve Safety) programme is an evidence-based training intervention for general practice staff to identify, respond and appropriately refer women who are affected by DVA. It is being implemented in general practice nationwide. IRIS ADViSE (Assessing for Domestic Violence in Sexual Health Environments) adapts the IRIS approach for sexual health staff.

This project looked at the feasibility and acceptability of the IRIS ADViSE pilot in sexual health clinics in Bristol and East London. The pilot aimed to encourage sexual health staff to ask patients whether they were experiencing DVA, and to make referrals to specialist services.

IRIS ADViSE included all staff training, patient information materials, an enquiry prompt in the electronic patient record and a simple referral pathway to DVA advocacy services.

In the east London clinic over seven weeks:

• 267 out of 2,568 women attending were asked about DVA
• 16 of those (6 per cent) said that they were affected by abuse
• Overall, eight of the women affected by abuse (50 per cent) were referred to specialist services

In the Bristol clinic over 12 weeks:

• 1,090 out of 1,775 women attending were asked about DVA
• 79 of those (7 per cent) said they were affected by abuse
• Overall, eight of the women affected by abuse (10 per cent), were referred to specialist services

During the three months before the pilot started, there were no referrals to DVA specialist services at either site.

We also interviewed sexual health clinic staff and DVA advocate workers in Bristol.

All the people we interviewed felt that asking about and referring women on to DVA services was appropriate and valuable in a sexual health setting. They responded favourably to the training and felt more confident about asking about DVA and managing disclosures.

Staff said that patients’ welcomed being asked about it, even if they’ve not ever been involved in an incident of domestic abuse themselves, that they appreciate that people are asking that question.

The staff reported that some disclosures were considered relatively simple and easy to handle, where patients can be easily referred to the partner DVA organisation or given information.

However, cases with an immediate risk of harm to the patient or their children were more complex in terms of managing the patient’s wishes and navigating existing safeguarding procedures. This added to staff’s already limited time and busy workloads.

Dr Jeremy Horwood (pictured below), lead researcher from the Centre for Academic Primary Care at University of Bristol and NIHR CLAHRC West, said:

“Sexual health staff are definitely supportive of asking their patients about domestic violence and abuse. But it’s crucial that they have support to do so, as these patients must be dealt with sensitively and referred on appropriately.

“At the policy and commissioning level, stronger recognition of the issues around domestic violence and abuse referrals, and resources to support them, are needed. Commissioners and local NHS trusts need to engage and commit to support domestic violence and abuse training, and to support programmes such as IRIS ADViSE.”

The study shows that it is feasible and acceptable to develop and implement the IRIS ADViSE training and referral package for sexual health clinics. At the policy and commissioning level, stronger recognition of the issues around DVA referrals, and more resources to support them, are needed. Commissioners and local NHS trusts need to engage and commit to financially support IRIS ADViSE to maximise its potential.

This study is part of CLAHRC North Thames’ wider collaboration with our colleagues at CLAHRC West.  Researchers and staff work across London and Bristol sites each bringing their own expertise and experience to produce high-quality research.  Our teams regularly meet to coordinate their work, and develop bids for funding for future work.

For this IRIS ADViSE project CLAHRC North Thames led on the work at the initial pilot site, focusing on the quantitative analysis; whereas CLAHRC West led on the qualitative analysis.

Links and downloads

BMJ talk medicine
Domestic violence affects a quarter of UK women: the role of sexual health practitioners
Listen to a podcast hosted by Editor in Chief of Sexually Transmitted Infections Jackie Cassell who is joined by Neha Pathak (Wellcome Trust Clinical PhD Fellow, Institute for Epidemiology & Healthcare, University College London) and Gene Feder (University of Bristol, Centre for Academic Primary Care) to discuss the various forms of the abuse and how healthcare practitioners can intervene.

 

Read our CLAHRC BITE summarising the research
Improving the response to domestic violence in sexual health clinics

Read the full research papers –

Sohal AH, Pathak N, Blake S, Apea, V. Berry, J. Bailey, J. Griffiths, C. Feder, G. (2018)
Improving the healthcare response to domestic violence and abuse in sexual health clinics: feasibility study of a training, support and referral intervention
SexuallyTransmitted Infections doi: 10.1136/sextrans-2016-052866

Horwood J, Morden A, Bailey JE, Pathak, N and Feder, G. (2018)
Assessing for domestic violence in sexual health environments: a qualitative study
Sexually Transmitted Infections. doi: 10.1136/sextrans-2017-053322

Pathak N, Sohal AH, Feder G.(2017)
How to enquire and respond to domestic violence and abuse in sexual health clinics.
Sexually Transmitted Infections. 2017 May;93(3):175-178. doi: 10.1136/sextrans-2015-052408. Epub 2016 Jul 25.