2019/20 Research Committee Chairman’s report - Professor J Mark Wilkinson
NJR Research Committee
The Research Committee is responsible for delivering the research agenda of the NJR. The committee’s aim is to enhance the understanding of the science of arthroplasty, improve clinical practice and benefit public health.
Research provides the route to improved treatments and keeping patients at the centre of what we do is a guiding principle for all NJR research activity. During 2019/20 the committee has had oversight of several major projects. Below are details of a small selection of these projects amongst a varied programme of work currently underway. These projects represent key achievements for the NJR in meeting its aim to maximise the value of the NJR dataset to patients and the wider healthcare community. My thanks go to all members of the Research Committee for their efforts in the past year and whose hard work makes it possible to facilitate data access and to support these high quality research outputs.
Having restructured the representation of NJR’s data analysis contractors (University of Bristol and University of Oxford) on the Research Committee, we are pleased to welcome Professor Andy Judge and Mr Mike Whitehouse onto the committee and would like to thank both Professor Yoav Ben-Shlomo and Dr Celia Gregson for their service to the group over a number of years.
NJR ePREMs Pilot
Collection of patient-reported metrics remains a major strategic priority for the NJR and the NJR PROMs Working Group was established to collaboratively draft an operational plan for how the NJR develops its patient reported outcome measures (PROMs).
This multidisciplinary group – consisting of clinicians, academics, information management specialists and patient representatives – has undertaken a review of ongoing PROMs activity in the area of arthroplasty surgery across the UK, engaging with multiple key stakeholders who are involved with the delivery of orthopaedic PROMs – including NHS Digital, NHS Wales and the National Orthopaedic Alliance.
A new innovation which has been developed during 2019/20 is a national pilot of collecting electronic Patient Reported Experience Measures (ePREMs) from all patients at six weeks following their surgery. This has involved updating the NJR consent form to ensure that a patient’s email address and mobile phone number could be captured as part of the NJR dataset. A set of experience questions have been agreed by the PROMs working group and during the pilot, these will be sent to patients for completion. At the end of the pilot, data will be analysed to determine if patient reported metrics are likely to be feasible at scale. Aggregate PREMs results will also be shared with hospitals to allow these to feed into local improvement discussions.
Patient Decision Support Tool
In 2019, the NJR launched the NJR Patient Decision Support Tool. This is a web-enabled personalised patient decision-making tool for those considering hip or knee replacement. This simple tool, the development of which was supported by the charity Versus Arthritis, will help patients who are considering having a joint replacement to make evidence-based choices about their treatment and share decision-making with their clinicians, when considering the benefits and risks of undergoing joint replacement. To date, there have been over 35,000 visits to the website from over 100 countries, with very positive feedback received.
Having now launched this tool (available at: https://www.njrcentre.org.uk/njrcentre/Patients/Patient-Decision-Support-Tool). The NJR is continuing to collaborate with the University of Sheffield to further develop the prediction algorithm methodology underpinning the tool, which will result in algorithms that will allow the most up-to-date NJR data to be used to calculate the projected risks and benefits of joint replacement surgery, thus increasing the versatility of the prediction tool.
NJR Health Economics
The NJR continues to fund health economics work at the University of Bristol and this year this programme has focused on examining the lifetime cost-effectiveness of implants for patients of different age and gender profiles in hip replacement surgery. For more detail on this project see the In-depth studies section of this year’s NJR Annual Report (available at https://reports.njrcentre.org.uk).
NJR Data Access Portal
The NJR Data Access Portal represents a secure data access platform that houses Registry data in a secure area that researchers can access, reducing the administrative burden of legal permissions that would be required if data were to be released to them directly. This portal has now been used by several groups to securely access NJR data and from 2020/21 the portal will be the standard mechanism by which NJR data is made available to researchers. The committee has also made progress with entering into a sub-licensing agreement with NHS Digital that would allow applications for linked NJR, HES, PROMs and mortality data to be managed under a single application. Details of how to apply for secure access to NJR data for research purposes can be found at https://www.njrcentre.org.uk/njrcentre/Research/Research-requests.
NJR Annual Research Programme
Building on many high-quality publications over the years, the NJR continues to develop its annual research programme. Current projects include: inequalities in provision and outcomes; surgical approach; development of an arthroplasty morbidity index; and examining factors associated with revision and its outcomes. As projects complete, new topics are brought on-stream.
The NJR is also looking forward to starting a programme of work this year examining the utility of data from the national PROMs programme for understanding the performance of implants in the Registry. This work will examine national PROMs data from NHS Digital in England, and consider if the data scope and quality is sufficiently robust to adopt PROMs as an outcome measure across the NJR.
Use of NJR data this year
The Research Committee encourages external use of the NJR dataset to answer questions of clinical relevance and this year the NJR dataset has provided opportunities for several external researchers to develop innovative projects.
The NJR dataset has been used as the key resource in 12 research papers published during this same time-period, of which four were conducted or led by external, independent researchers.
Please see the NJR Research Project Portfolio here which catalogues all sanctioned research projects, progress reports and NJR updates in relation to research, using the NJR dataset, together with links to all publications related to NJR data.
Research Fellowship Scheme
Due to the COVID-19 pandemic the committee has been unable to appoint to the NJR Research Fellowship this year. We are expecting to open the 10th round of this programme in 2021. This is part of the NJR’s Joint Clinical Research Fellowship scheme run in partnership with the Royal College of Surgeons of England, helping the NJR to support high quality research in orthopaedics. Prospective fellows are encouraged to apply to the rolling programme. The NJR encourages applications from a diverse pool of applicants, including those from the allied health professions and non-clinical backgrounds. Look out for current opportunities on the NJR website.
Toby Jennison, the ninth appointed Research Fellow, continues to investigate five-year survival of total ankle replacements, as well as supporting the NJR in its classification and reporting of ankle arthroplasty across the Registry.
Rob Middleton, outgoing Research Fellow, completed a study looking at the association between frailty and outcome in joint replacement surgery. This has involved the validation of the electronic Frailty Index as a measure of frailty when applied to HES data. A second phase of this work (outside of the NJR/ RCS Research Fellowship programme) will investigate the associations between patient frailty and the primary and secondary outcomes of joint replacement (change in quality of life, change in Oxford Knee Score, complication events, mortality and revision rate).
Submitting a research application
The Research Committee takes formal responsibility for the approval for the release of NJR data for research through an impartial and objective process and has oversight of the use and reporting of this data by research groups. Its priority is to ensure that any research question justifies access to the data and offers potential benefits to patients. Research proposals should align to the NJR’s priority framework and be feasible, ethical, relevant and methodologically sound.
The NJR has a commitment to uphold the standard and consistency of work that is carried out using NJR data, in line with national and international legislation. Therefore, all requests must also be approved by the Healthcare Quality Improvement Partnership (HQIP) Data Access Review Group for final authorisation of data release.
If you would like to submit a research application, the first step in this process is to submit an expression of interest for consideration. Invited applications are reviewed by the committee quarterly. Full details of the NJR’s research application pathway, together with detailed guidance notes for applicants, can be found here.
Please see the NJR Research Project Portfolio. A full list of publications related to NJR data is included in Appendix 4.