The NIHR HIC is a collaboration between NHS trusts, each of which has a strong relationship with a partner university. These relationships have been strengthened and supported by the NIHR, in particular through the NIHR Biomedical Research Centres (BRCs) within each trust. The BRCs provide the focal points for the NIHR HIC, bringing together clinical, scientific, and informatics expertise at each trust to improve the quality and availability of patient information. Currently, over 20 BRCs have joined the HIC.
UCLH is one of five NHS Trusts with the largest Biomedical Research Centres (BRCs) collaborating in the NIHR HIC Programme, for which the initial objective was to demonstrate how sharing of NHS clinical information, held electronically, could facilitate more effective clinical research, leading to benefits for patients and the public, researchers and NHS staff.
One of the main objectives of the HIC is to develop shared informatics capability in the following therapeutic areas:
► cancer
– breast
– colorectal
– lung (UCLH co-lead)
– myeloma (UCLH co-lead)
– ovarian
– prostate (UCLH co-lead)
► cardiovascular
► critical care (UCLH lead)
► hearing health (UCLH co-lead)
► infectious diseases (UCLH co-lead)
► musculoskeletal
► renal transplantation
► transfusion-dependent anaemias
► viral hepatitis
Critical Care
A critical illness puts a patient’s life at risk. For example, the patient may have a severe infection (sepsis), undergone major surgery, been involved in a serious accident or had a major heart attack.
It is likely that each of us will be admitted to a critical care unit at some point in our lives. A critical care unit, often called Intensive Care or High Dependency, is a specialised area within the hospital where critically ill patients are looked after. Critical care units are staffed by specially trained professionals, who use some of the most advanced monitoring and treatments available to try to get the patient through their illness.
Despite all the resources available the outcome and the way forward are not always clear. With patients often fighting for their lives, critical care admissions can be very distressing for patients and families alike.
The NIHR HIC Critical Care
UCLH leads the NIHR HIC Critical Care theme. Critical care units collect an incredible wealth of healthcare data, most of which is used for that moment in time before being stored and in the majority of cases forgotten.
The NIHR HIC Critical Care aims to use this often forgotten data to help patients, clinicians, family members and researchers understand critical illness. We want to use these data to thrown a light on disease mechanisms, find out which groups of patients may respond better to certain treatments, predict problems before they happen, measure the impact critical illness has on lifespan and healthcare utilisation etc. There are too many vital, unanswered questions that until now have been impossible to answer. The NIHR HIC Critical Care has the potential to help address these gaps in our knowledge.
From the beginning of the programme data security and anonymity were paramount: unless state of the art protection was guaranteed, this programme would not be viable. It was decided that the data to be used for the NIHR HIC Critical Care should be as close to what the doctors, nurses and other healthcare professionals use on a day-to-day basis to manage patient care (for example, blood pressure, heart rate and oxygen levels are collected throughout the patient’s stay). Data about treatments and diagnosis are also included.
The programme team felt it was important that the impact of hospital stay and treatment should be followed up over time. This would provide answers to the really important questions regarding long-term outcomes, such as how long patients lived after a serious illnesses. In order to find out what happened to patients after a critical illness, the data must be able to link up with other NHS databases, such as hospital episode statistics. However, to do this a unique patient identifier must be in place. The identifiers we collect are the patient’s NHS number, postcode and date of birth. These identifiers are only used to link data and are never seen by researchers.
The data are stored in the UCL Identifiable Data Handling Solution. This is a world leading solution for storing sensitive information. It meets the standards of NHS Data Protection and the International Standard, ISO27001. Access is heavily restricted to specially trained UCL employees, via two factor authentication. The IDHS employs a Walled Garden approach to identifiable data, once the identifiers are in they are not released. The technical solution is then ‘covered’ in an Information Governance ‘wrapper’ that manages/audits all access and activity, ensures adequate training, performs penetration tests, etc.
This level of security has been reviewed and deemed acceptable by:
- Research Ethics Committee
- Confidentiality Advisory Group
- the NHS trusts involved in the project.
Though security is paramount, researchers still need to access the anonymised data. Only researchers from bona-fide bio-medical research institutions can apply to access these anonymised data. Their question must be relevant to biomedicine and be in the public interest. It could be envisaged these researchers may originate from:
- NHS
- academic institutions such as universities
- charities like the British Heart Foundation and Cancer UK
- pharmaceutical, medical device and diagnostic companies.
Though there may be very relevant questions we have decided not to accept applications from insurance, media or marketing researchers.
Researchers can apply to access anonymised data. Applications are reviewed by the NIHR HIC Critical Care Scientific Advisory Group who will scrutinise the scientific validity of the researcher’s question, the ability of the data to answer that question and the risk associated with such research. Data requests that could potentially re-identify patients will not be considered.
***STOP PRESS***
UCLH to lead data initiative to improve care for myeloma patients patients alongside Oxford University Hospitals NHS Foundation Trust and University Hospital Southampton NHS Foundation Trust.
The National Institute for Health Research Health Informatics Collaborative (HIC) Myeloma data collaboration will enable researchers and clinicians to harness routinely collected patient data to learn more about how patients are being managed and identify areas for improvement.
Project leads will be Dr Rakesh Popat, Consultant Haematologist at UCLH, Dr Sally Moore in Oxford University Hospitals NHS Foundation Trust (OUH) and Dr Matthew Jenner at University Hospital Southampton NHS Foundation Trust (UHS). The charity Myeloma UK will provide funding for the initiative.
The NIHR HIC is an established partnership between NHS Trusts that brings together data scientists and clinicians to help pool data from multiple NHS trusts so it can be used for research that will benefit patients, whilst providing assurance that the patient data is protected and used correctly. UCLH involvement is supported through the NIHR UCLH Biomedical Research Centre.
This myeloma data collaboration will be the first blood cancer theme within the HIC. It aims to set up a framework for the collection and analysis of myeloma patient data, which will drive improvements in patient care.
The project has the potential to not only pave the way for myeloma focused data projects – but to provide learning for any blood cancer data project.
Dr Rakesh Popat, who will be one of the Principal Investigators of the NIHR HIC Myeloma Project said: “Collaborating with the NIHR HIC provides a unique opportunity to combine clinical expertise in myeloma with the research informatics expertise of the contributing centres to understand and interrogate data collected across the patient experience. Although clinical trials are the gold standard for measuring and comparing the suitability of treatment approaches, they do not provide data for all patient groups or allow comparison against other treatment approaches. Being able to safely collect and compare ‘real world’ data will help us to answer the research questions that will benefit all myeloma patients in the UK.”
Laura Kerby, Chief Executive at Myeloma UK said: “Working with the experience held by the NIHR HIC, our funding ensures that there is dedicated clinical and informatics expertise to harness the power of routinely collected patient data to push for the best possible treatment and care for all myeloma patients.”
