SystmOne users found out more about how to bring analytics into healthcare, while at the SystmOne National User Group Conference on 15-16th May. Users were able speak with ResearchOne and attend a presentation to see how they could engage in both the development and use of analytics in health care.
Discussions focused on how ResearchOne can support SystmOne users in the challenge of working securely, and from an evidence base, in a rapidly changing field. ResearchOne enables the development and testing of research outcomes that can be utilised at the point of care through patient records.
There was a lot of interest in the projects that are analysing de-identified records information to develop clinical insight that can be embedded in clinical systems. This is possible due to the over 400 organisations that have joined ResearchOne – many of whom are engaged in clinical trials through ResearchOne.
Members of the conference learnt more about the frailty index that has been developed. It identifies an individual’s frailty based on codes in their record. Groups of SystmOne users are going to pilot different ways to use the index in their health records. For example, a protocol could automatically calculate a patient’s frailty and suggest an appropriate action such as a purpose-designed activity template.
In such ways, analytics can help healthcare to evolve proactively with the changing needs of individuals. Health analytics needs to be based on real-time information so that this can happen dynamically. Health records are therefore valuable for ongoing, evidence-based development of patient care. Researchers can use health records to both develop insights and to embed evidence-based innovations in clinical care. This is achieved by closing the gap between researchers, clinicians and patients.
View the presentation at:
Over 5 million non-identifiable health records became available for approved research in 2013, heralding a new phase for rapid research. Since the launch of ResearchOne in February 2013, over 400 organisations have joined this new research community. Full and non-identifiable record information is updated weekly from these organisations.
Researchers and users work together with this information throughout the year to investigate the issues that matter in healthcare. Early results are already promising new discoveries to help in such areas as prescribing, vaccination uptake and telehealth. Projects are exploring such topics as microbial resistance to antibiotics and the early identification of colorectal cancer.
Currently ten organisation types, ranging from hospitals to end-of-life organisations, have got involved to make this a truly comprehensive research community. This joins together a large volume and variety of timely data which is enabling the development of such meaningful innovations as indicators of frailty or inherited risk.
Outcomes, tools and protocols are openly published and can be quickly embedded into clinical systems for use in clinical practice.
Organisations can contribute non-identifiable information to ethically approved research projects by opting in to ResearchOne under organisation preferences on SystmOne.
Over 330 health and social care organisations are sharing their non-identifiable record information for research. Approved research projects can access this information, which represents over four million patients, to improve understanding.
Dr Klaus Witte, cardiologist and heart specialist in Leeds, gives his views on data sharing.
“Sharing data is crucial for moving clinical medicine forward. Access to large data sets mean we can get more accurate information. Once trends have been identified, feedback can be given to clinicians so they can ensure they are delivering appropriate care.”
“By not only collecting data but also assessing and improving care pathways, we can identify what works well for patients – and crucially, what does not.”
Klaus recognises the ethical concerns in sharing information. “Patient care is an ongoing process and everyone should participate. Whilst it is true that research groups and health care institutes such as NICE often have to use personal details such as age group or gender to look at how a treatment affects different groups, this can be de-identified. By using established de-identification protocols to enable data sharing, researchers can access more clinical information and so make more personalised, effective, and value-for-money medicines.”
“Provided that the data is handled sensibly and ethically, it can be said that not using data to learn about what improves quality, equity, and access to treatments is unethical toward future patients.”
ResearchOne was designed because organisations using SystmOne were asking how they could contribute their centrally integrated records information to research.
SystmOne users can sign up to an ‘outstandingly’ developed method for improving the delivery of health and social care.
The delivery of evidence-based care is a national priority. To help address this, TPP undertook a Knowledge Transfer Partnership (KTP) with the University of Leeds to make the information in 27 million patient records held in SystmOne usable for research.
The UK Technology Strategy Board has given the highest possible grade of “outstanding” to the KTP, which developed ResearchOne. It has been nominated for the privileged award of ‘Best Partnership’.
“We originally planned to develop a few risk tools but soon saw that we could make a global model for a cycle of information and innovation to drive up patient care” says Samantha Crossfield who was the KTP Associate. This is achieved by the closeness between ResearchOne and SystmOne.
As a result, health and social care organisations using SystmOne can support research that improves the evidence base and clinical systems used in care delivery.
Owen Johnson, KTP supervisor from the University of Leeds, says “it’s brilliant to see the outcomes of the KTP getting such recognition on a national level.”
SystmOne users attending the SystmOne National User Group Conference on 16-17 May 2013 had the opportunity to find out all about ResearchOne, its projects and plans for the future.
Many SystmOne users made the most of the chance to find out more about how to support non-identifiable research under the REC-approved model of ResearchOne. A number of workshops and presentations were run with good attendance in the TPP Drop-in Lounge.
Throughout both days the ResearchOne stand served as a focus for users and research academics to discuss the latest issues facing the NHS, and how records research can help to address these.
View slides on the Clinician – Research Feedback Cycle
Over one million patients are now contributing anonymous information to Public Health England (PHE) for health protection purposes.
GP Practices using SystmOne can choose to support the TPP-PHE surveillance system. TPP send anonymous information every day to the PHE from opted in practices. This is used to monitor disease outbreaks and environmental events that affect public health.
Over 100 GP Practices have joined this free service, providing a coverage of over one million patients. It is hoped that another 1,500 GP Practices will opt in to extend this representation.
The PHE produce weekly bulletins from this anonymous data. For more information, read the TPP information sheet.
The ResearchOne pseudonymisation procedure was presented at a workshop set up to help develop an open specification for pseudonymisation.
A linkage specification across the national health and research platform would help projects to link information from different sources. Linkage allows more comprehensive information to be used in research.
ResearchOne provides pseudonymous data to linkage projects. A recent cardiovascular research project linked ResearchOne information to Hospital Episodes Statistics and Myocardial Infarction Audit Project data.
Pseudonymisation could be adopted widely as a standard practice to maintain privacy during linkage. This would mean that identifiers are pseudonymised (so they are not identifiable without access to the data-provider) at source and the pseudonymised identifiers are then linked.
Find out more about the workshop series, including presentation slides.
ResearchOne have received approval from the Research Ethics Committee of the National Research Ethics Service (NRES) to build a de-identified database. This is based on the recommendation of the National Information Governance Board (NIGB) that also considered the de-identification and security policies. This brings ResearchOne a significant step closer to utilising the efficient use of records data in research for the benefit of health and social care delivery.
You can read the NRES review and NIGB review.
Health and social care units can now securely provide de-identified information from electronic patient records. This will drive timely research on the topics that matter in patient care. All outcomes developed by ResearchOne will be relayed to the contributing units and published openly. Over the next couple of weeks users of all SystmOne modules in health and social settings outside of prisons will be invited to participate. Anonymised information from over 25 million shared records could be contributed to the database.
The new database is designed to enhance the capacity of electronic patient records to represent the needs of the patient and the population. In the long term, improvements to commissioning, patient outcomes and NHS performance will be realised. Samantha Crossfield from TPP and the University of Leeds, says “I am delighted with the seal of ethical and governance approval. With this we can now set out to ethically enhance the access and engagement of patients, clinicians and researchers with records research for the benefit of patient care”.
Patients, clinicians and researchers are considered to be central to ResearchOne. Representatives have been involved throughout the project and continue to provide direction and monitor projects through the database governing committees.
This site will continue to provide updates and more details can be found in the information section. More information regarding how organisations can get involved with ResearchOne will be published on SystmOne.
Read the information leaflets for organisations and patients, and the joining information.
Members of the ResearchOne team were invited to present yesterday at a training day attended by members of the Research Ethics Committee and researchers. Dr Chris Bates gave a presentation and answered questions about the structure, governance and accessibility of the non-identifiable ResearchOne database. The workshop was organised by the Electronic Patient Record Research Training Project at the University of Leeds. The event trained people about the capacity for large datasets of health record information and the legal framework surrounding this in the wake of the prime minister’s call in 2011 for research access to patient record information.
View more information and the presentation
The launch of the ResearchOne organisation and its plans for a de-identified research database have sparked enthusiasm and interest from clinicians, NHS organisations and researchers across the UK. The next step, already underway, is to gain ethical and governance approval from the necessary national boards before inviting SystmOne users to contribute de-identified data. This answers the question that many PCTs, CCGs and researchers are asking lately – ‘how can I get involved?’.
Samantha Crossfield, the ResearchOne Lead at TPP and Leeds University, said “we want to help researchers to access relevant data, and help clinicians to get evidence for good practice. If all SystmOne organisations joined ResearchOne this would be the most comprehensive health records database in the world!”
Read some of the publicity that this launch has received by following these links: