Category Archives: Current projects

Some of our current research and healthcare projects.

Mother and Child Outcomes from the Whooping Cough Vaccination Programme

The UK Teratology Information Service (UKTIS.org) are using ResearchOne data to study the impact of the whooping cough (pertussis) pregnancy vaccination programme on the health of mothers and children in the first few months after birth.

Pertussis is a serious infection and the NHS advise vaccination against pertussis betweeen 28 and 38 weeks of pregnancy in order to protect babies until they are vaccinated.  The vaccination of babies commences at two months of age.  Clinical trials rarely include pregnant women, but ResearchOne offers the possibility for data from health records to be used to study the effects of vaccination on maternal and foetal health.

The UKTIS is a national service that provides NHS healthcare professionals and regulatory agencies with evidence based, up-to-date information about the effects of chemicals and medicines on foetal growth and development.  UKTIS also conduct research and surveillance for signals that a medicine may be harmful to a foetus (teratogenic).  Dr Laura Yates, Head of Teratology, stated that “ResearchOne offers the potential to analyse large-scale data on a greater number of foetal exposures, almost in real-time.”

This project involves the analysis of non-identiable information from GP and community care records to compare outcomes between vaccinated and non-vaccinated mothers and their infants.  This will provide evidence for the impact of vaccination on rates of pertussis infection among babies and pregnancy complications and on birth weight.

This project is expected to contribute significantly to our understanding of the benefits and safety of the ongoing UK pertussis vaccination programme.  The results will be reported to the Medicines Healthcare Regulatory Agency (MHRA),  Joint Committee on Vaccination and Immunisation (JCVI) and the European Medicines Agency (EMA).

Linking Research Information

A new Medical Bioinformatics Centre funded by the Medical Research Council will usher in a new generation of integrated research that benefits patients.  Organisations using SystmOne and their patients will be given opportunities to be involved with research that is supported by the centre.

The Leeds MRC Centre will build a highway for pseudonymised data linkage and a virtual environment for conducting secure, consented research.  This will enable patient record, clinical and molecular data to be integrated securely for projects that aim to improve patient care.  As a partner, TPP will develop a method for patient recruitment and linking to consented and non-identifiable record data.

Patient health and response to treatment is shaped by many factors which this centre will link together.  Understanding of patient care may be improved by joining information from, for example, patient records in hospitals and GP practices, questionnaires and DNA sequencing.  By enabling such comprehensive research, this centre may lead to insights into the molecular drivers of disease, improved ways of diagnosis, and relevant information for treatment decisions.  This will lead to a more personalised delivery of care for every patient.

The new MRC Centre draws on the rich expertise that exists in Leeds.  The Lead Principle Investigator, Professor Sir Alex Markham, brings experience in developing genetic tools and embedding these in routine NHS diagnostic practice.  One skill-set that is led by co-investigator Professor David Westhead is machine-led classification of cancer and pattern-discovery.   TPP’s SystmOne centrally hosts patient records from primary, secondary and social care and bring expertise in record linkage and research.  The centre brings such strands together in order to help bring genetic sequencing into routine, every-day screening, diagnosis and treatment planning for the NHS.

A method for linking consented patient record, clinical and genetic information and hosting research in a virtual research environment will be developed.  The model developed by ResearchOne for transforming patient record information into non-identifiable, ethically approved research outcomes is being adopted by Leeds Teaching Hospitals Trust.  Leeds will develop a virtual research environment using its high-performance computational capacity to enable secure research access to linked molecular and record data held in safe havens.  This will forge the future for secure, integrated research.

The MRC Centre will lead research in four key areas.  The stream led by Professor Timothy Bishop joins patient record, environmental and genetic data to understand how cancer grows and spreads, and how it responds to treatment.  Work will also identify genes associated with inherited diseases such as neuro-developmental delay, and ways to detect kidney diseases.  This includes Acute Kidney Injury, which affects over 20% of patients in hospital.  A fourth stream will research the relationships between genes, cancer tumour response, and outcomes such as long-term survival that are identified from patient records.  Outcomes from these projects will help to shape care in hospitals and the community.

Read more about the MRC funding.

Identifying Patient Frailty

Clinical knowledge and ‘big data’ analysis are being combined to develop a frailty indicator based on routinely collected records data.  With a growing elderly population it’s increasingly important to identify when patients are becoming frail so that the resources for appropriate care can be arranged.

There is national focus on how to be more pro-active about patient care in the community, as Jeremy Hunt highlighted in September.  ResearchOne and researchers at Bradford Foundation Trust and the University of Leeds are developing an indicator of patient frailty that uses GP practice data.  This could then be run by GPs on their clinical data to identify patient frailty and monitor how this is changing on a patient and practice-wide level.

Making frailty quantifiable, and identifiable from routinely collected data, is a huge step forward for consistent patient care.  Professor John Young, the National Clinical Director for Integration and the Frail Elderly at NHS England, is working with ResearchOne on developing the frailty indicator. “Frailty is not seen as a formal diagnosis and yet it is progressive, increasingly prevelant, impacts on quality of life and is expensive. Having an index of frailty will help it to be seen and treated as a long-term condition, and can help with selecting an appropriate care pathway for each patient.” Read an interview with Professor Young.

A combination of clinical understanding and big data analysis is being used to develop the frailty indicator.  Firstly, analysis of non-identifiable records data from ResearchOne unearths potential clusters of information that may relate to frailty.  These are reviewed by gerontologists and researchers to identify clinically relevant indicators – deficits - that are used to build an index of frailty.

Dr Andrew Clegg, clinical senior lecturer at Leeds University, and honorary consultant geriatrician at Bradford Teaching Hospitals is a member of the research team who is also keen to use the frailty indicator in daily practice.  “Deficits are things that indicate frailty, such as osteorporosis or an abnormal blood test result, and the index can quickly add up such instances in the record to give a simple frailty score.”  He says “it would help with decisions around care planning”.

Read an article published by the HSJ

Impact of Text Messages on Vaccination Uptake

GP Practices using SystmOne can join a trial to explore how to increase uptake of the influenza vaccine among the under 65s.

Text message reminders are often used in clinical practice, but their impact on the uptake of vaccines is currently little known.  Researchers at the London School of Hygiene and Tropical Medicine areinvestigating the impact of sending free SMS reminders for the influenza vaccination.

Practices are being assigned at random to one of two groups.  One proceeds with their usual seasonal flu campaign, while the second are asked to send a single text message to patients under 65 who are in clinical risk groups.  These practices run a report on SystmOne to identify those who would receive the text message intervention.

Non-identifiable information from ResearchOne is used to investigate differences on vaccination uptake among patients who do or do not receive a text message reminder.

Please email Emily Herrett (emily.herrett@lshtm.ac.uk) if you would like to receive more information about the trial.

Public health monitoring

Real-time Syndromic Surveillance

GP Practices using SystmOne can help to trigger an even earlier warning of public health risks by opting in to a new system that has been developed with Public Health England (PHE).

TPP provide anonymised, daily information from consenting GP Practices to the PHE for free. It is the first time that the PHE has been able to monitor GP Practices on a daily basis.

GP Practices can set their organisation preference to ‘opt in’ to provide anonymous information to the PHE’s public health monitoring service.  This supports public health protection through the early warning and monitoring of disease outbreaks and environmental events.

The system has recently indicated that the measles outbreak is stabilising.  The PHE produce weekly bulletins to show such trends.

The anonymous information collected from consenting practices shows daily practice morbidity.  More information about the indicators collected and how to join is in the TPP information sheet.

ResearchOne were involved in developing a secure way for SystmOne users to support this public health system.

Calcium supplementation and cardiovascular risk

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ResearchOne are collaborating with the University of Leeds to examine the impact of patients with heart failure taking calcium supplements.

People taking calcium supplements may be at higher risk of cardiovascular events such as heart attacks.  This study investigates the correlation among patients with existing heart failure, and examines the trade-off with reduced risk of osteoporotic fractures.

ResearchOne are providing the historic information and detailed records information that is required in order to consider confounders.  Dr Klaus Witte, Senior Lecturer and Consultant Cardiologist at Leeds, said that “We have performed a preliminary analysis on a small dataset collected manually, and found that calcium supplements are associated with a worse outcome, but we do not have all of the data to look for confounders.”

There are health and economic imperatives for investigating the safety and benefit of calcium supplements for patients with chronic heart failure.  The outcomes of this study will provide decision support for clinicians and patients regarding the prescription of calcium supplementation.

ASPIRE: Supporting Evidence-Based Practice

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ResearchOne are working with the ASPIRE research group that aims to support general practices in implementing the evidence-based clinical care recommended by NICE guidelines.

It is essential that research evidence translates into clinical practice. The NICE guidelines include such evidence-based advice as tracking blood pressure and protein:creatinine ratios among patients with chronic kidney disease.

This five year project is working with 60 practices in West Yorkshire that use SystmOne and are monitoring the impact and adherence to NICE guidelines. These practices contribute de-identified data to the project through ResearchOne.

The ASPIRE team will analyse and interpret this data from ResearchOne in order to develop an intervention package based on audit and clinical decision support systems, with the aim of supporting guideline adherence.

The impact of the interventions will be evaluated using further extracts of de-identified practice data from ResearchOne and via interviews with the practices.

Visit the ASPIRE website
Read more about the NHS NICE guidelines

Electronic disease notification pilot

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Public Health England (PHE, previously the Health Protection Agency) and TPP have been pilotting a system that enables SystmOne users to send electronic notifications for suspected infectious disease cases.  The ResearchOne team have been involved with this project that represents a significant system improvement for the purpose of public health protection.

Currently a diagnosis of particular infectious diseases, including meningitis and food poisoning, must be notified by telephone or fax to the local HPA unit within three days of a clinician seeing a patient. All Registered Medical Practitioners (RMPs) are legally obliged to supply this information in order to protect public health.

This pilot aims to streamline this process by allowing the information to be sent electronically, with as much case information as possible automatically populated from the patient record. There is also an automatic prompting mechanism which triggers an alert to the RMP within SystmOne should details of a notifiable disease be entered.

It is expected that the new functionality will significantly improve notification rates and timeliness.

The pilot for the electronic messaging system began in November with a cohort of 17 practices across West Yorkshire. Already, several notifications have been sent electronically to the HPA for analysis, the majority of which have been regarding whooping cough cases.

The HPA are looking to extend the electronic notification system to all general practices in 2013/14, once the benefits of the system have been assessed.

Read the TPP press release

Improving Prevention of Cardiovascular Events in Primary Care

The IMPROVE-PC project is developing methods to promote a healthy lifestyle and support behaviour change that helps to prevent vascular events such as heart attacks.  ResearchOne have supplied consented records information from SystmOne and helped IMPROVE-PC to pseudonymously link this to information from Hospital Episodes Statistics (HES) and Myocardial Ischemia Audit Program (MINAP).

The team, led by Dr Kate Hill, study how well information transfers between organisations and identify gaps or inconsistencies in care.

The linkage study is part of a larger project (IMPROVE-PC), in a portfolio of vascular studies that form one of the five research themes in the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for Leeds, York and Bradford.

Steve Magare the data manager for the project, commented that “the centralised nature of SystmOne has significantly reduced the burden of individual, practice-based data collection and saved time for primary care practice staff.”

Steve noted that the centralised system helps clinicians and researchers to access important information recorded in other organisations.  “The availability of patient records data has always been seen to be the missing link and the development of ResearchOne will allow research projects such as this to realise the full potential of using linked data to improve healthcare in an efficient and cost effective manner.”

Visit the IMPROVE-PC website or contact the Project Coordinator, Dr Kate Hill, for more information: k.m.hill@leeds.ac.uk

Research tools for free text anonymisation

 

ResearchOne has enabled access to health records information in order to develop a tool that will help to maintain privacy and support best practice in research.  The e-health GATEway to the Clouds project is developing a JISC-funded research tool to anonymise free text data from health records and are embedding it within a secure cloud-based Virtual Research Environment (VRE).  ResearchOne have extracted data from fictional but realistic records, created by 1,200 Leeds medical students on SystmOne, to enable the researchers to pilot the tool securely.

Medical students have received training in clinical systems since 2008 by maintaining records on SystmOne based on fictional consultations. This provided realistic data for the development of a tool to allow researchers to manage the risk of identifiable data being seen in the text  contained in health records. The tool will enable identifiable information such as a patient or clinician’s name to be removed so that the researcher receives only the valuable health information from health records.

View more information about the project and the research paper.