2018/19 Research Chairman’s report - Professor J Mark Wilkinson
NJR Research Committee
The research committee is responsible for delivering the research agenda of the National Joint Registry. Our aim is to enhance the understanding of the science of arthroplasty, improve clinical practice and benefit public health. This year we are delighted to welcome two new members to the research committee team, Mr Jitendra Mangwani who brings expertise in foot and ankle surgery and Mr Tim Wilton, the new NJR Medical Director. We would like to express our thanks to Mr David Macdonald and Mr Andy Goldberg who have demitted from the research committee this year.
Research is the route to improved treatments, and keeping patients at the centre of what we do is a guiding principle for all NJR research activity. In 2018/19 the research committee has overseen a number of major projects. Below are details of a small selection of projects amongst a varied programme of work 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 to all members of the research committee for their efforts in the past year, whose hard work makes it possible to facilitate data access and support these high quality research outputs.
Patient Decision Support Tool
We were delighted to launch the NJR Patient Decision Support Tool during 2019. This is a web-enabled personalised patient decision-making tool for patients considering hip or knee replacement. This simple tool, whose development was supported by the charity Versus Arthritis, will help patients considering joint replacement make evidence-based choices about their treatment and share decision-making with their clinicians when considering the benefits and risks of undergoing joint replacement.
This project represents a substantial initiative on the part of NJR members to meet one of our core objectives: to improve accessibility of the NJR resource to patients and promote shared, informed and value-based decision-making. Decision tools fill the gap between population-level data and its application to the patients’ individual circumstances, to better inform patients making choices about healthcare interventions, enhance patient participation in the process, reduce decisional conflict and also benefit healthcare economies through improved clinical outcomes and better resource utilisation.
Having now launched this tool (available at: http://www.njrcentre.org.uk/njrcentre/Patients/Patient-Decision-Support-Tool), we are continuing our collaboration with the University of Sheffield to further develop it. This will involve developing algorithms that will allow the most up-to-date NJR data to be used to calculate projected risks and benefits of joint replacement surgery.
Research Ready Dataset and Data Access Portal
Building upon our development of the NJR ‘research ready’ dataset last year, we are now continuing to improve the NJR’s data access systems to make the process of applying for, and working on, NJR data more straightforward for researchers.
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 burden of legal permissions that would be required if data were to be released to them directly. We have 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 to NJR.
NJR PROMs Strategy
PROMs remains a major strategic priority for NJR and in 2018/19, an NJR PROMs working group was established to develop an operational plan for how NJR develops our PROMs activity.
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, and has engaged with multiple key stakeholders who are involved with the delivery of orthopaedic PROMs – including NHS Digital, NHS Wales and the National Orthopaedic Alliance.
NJR Annual Research Programme
Building on a number of high-quality publications over a number of years, the NJR continues to develop our 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.
Use of NJR data this year
The research committee encourages external use of the NJR dataset to answer questions of clinical relevance and the NJR dataset has provided opportunities for a number of external researchers this year to develop innovative projects.
The NJR dataset has been used as the key resource in nine 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
We are pleased to welcome Toby Jennison, our 9th appointed Research Fellow, who will be investigating five year survival of total ankle replacements. This programme is part of our Joint Clinical Research Fellowship scheme run in partnership with the Royal College of Surgeons of England, helping us to support high quality research in orthopaedics. Prospective fellows are encouraged to apply to our rolling programme. We encourage a diverse pool of applicants, including those from the allied health professions and non-clinical backgrounds, to apply. Look out for current opportunities on the NJR website.
Richard Craig, outgoing Research Fellow, completed a study looking at improving outcomes after shoulder joint replacement surgery. This is the first examination by the NJR to determine the characteristics of patients who benefit from shoulder replacements. Study findings indicate that five out of six patients improve with surgery for shoulder arthritis, but one out of six may not notice any benefit. Computer-based regression modelling methods were used to generate individual predictions of those patients most and least likely to benefit. The project was also able to recommend a number of changes to improve the reproducibility, efficiency and validity of NJR shoulder data for future annual reports and research studies.
Research is also underway by our two current Research Fellows, Robert Middleton, who is investigating the association between frailty and outcome in joint replacement surgery; and Jonathan Evans, whose work focuses on benchmarking of hip prostheses. To find out more about the Research Fellowship programme and links to current and published work, please see the NJR website.
Submitting a research application
The research committee takes formal responsibility for the release of data for research through an impartial and objective process and has oversight of the use and reporting of NJR data by research groups. Our priority is to ensure that any research question justifies access to the data and offers potential benefits to patients. Research should align to the NJR’s priority framework and be feasible, ethical, relevant and methodologically sound.
We have 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 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. 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.