2014/15 Research Chairman’s report ~ Professor J Mark Wilkinson
The Research Sub committee (RSC) is responsible for delivering the research agenda of the NJR. The RSC’s aims are to maximise data access for researchers and to promote the profile and branding of NJR outputs, but also to protect the NJR dataset and strengthen its governance through safe, effective, and efficient data management in line with UK legislation.
The committee takes formal responsibility for the release of data for research through an impartial and objective mechanism and has oversight of the use and reporting of NJR data by research groups. We have recently reviewed and revised our research strategy. Developments include a new single entry point for all research applications arising within or external to the NJR, the development of an annually updated build of the research dataset, and plans to develop a bespoke data access portal for researchers.
Use of NJR data this year
During the period 2014/15, the committee sanctioned the release of data to 18 research projects.
Analyses based on NJR data continue to achieve a high publication profile and include a paper in the Lancet led by the University of Bristol team documenting 45 day mortality after knee replacement for osteoarthritis. The study showed postoperative mortality after knee replacement has fallen substantially between 2003 and 2011. Efforts to further reduce mortality should concentrate more on older patients, those who are male and those with specific comorbidities, such as myocardial infarction, cerebrovascular disease, liver disease, and renal disease.
A full list of publications related to NJR data is included in the online appendices. The NJR Research Portfolio section of our website catalogues all NJR research data releases with their progress reports, together with links to all publications related to NJR data.
Areas of NJR supported research
In 2014 we conducted a mapping exercise to better understand the current research environment and the key stakeholders in musculoskeletal research, to ensure the research questions posed justify access to the data and minimise duplication and redundancy in the supported research. Proposed research must be of potential benefit to patients, feasible, relevant, novel, and ethically sound. Accordingly, we have established a broad set of themed areas within which we will consider applications for data access.
Annual Data Build and Data Access Portal
Work is underway to develop a ‘research-ready’ dataset, enabling researchers to utilise the NJR Annual Report dataset as a research resource. Concurrently, we are developing a Data Access Portal to maximise safe access to the NJR dataset. Access to the portal for approved projects will be made using an access key unique to each project applicant. Together these resources will facilitate more comfortable engagement with the broader national and international research agenda, reducing the burden on researchers by providing a single, clean source of data that is updated each year with a new cumulative dataset.
The RSC continues to foster its Research Fellowship scheme in partnership with the Royal College of Surgeons of England, designed to build registry-based research capacity within the clinical orthopaedic community. We are pleased to confirm a new Research Fellow was appointed in February 2015, Tanvir Khan, and a second recruitment round is planned for the autumn of 2015.
Research application pathway
All applications for a research project, external and internal, are now managed by the NJR Research Sub-committee through a single portal of entry and management pathway.
Applications requesting unlinked and fully anonymised NJR data are directed down the ‘external’ route, whilst applications requesting access to linked datasets or patient identifiable data (PID) are directed down the ‘internal’ or ‘collaborative’ project route. Internal projects require participation of an NJR Steering Committee member co-applicant to guarantee UK data governance requirements for traceable PID.
Quarterly submission and review deadlines are set for all research applications and investigators who are considering including NJR data in external funding applications are encouraged to submit an expression of interest to the NJR Research Officer in the first instance.
Where it is envisaged that aspects of proposed work might duplicate or overlap with existing research on the register, before submitting a formal application for the data applicants are encouraged first to check the NJR Research Portfolio and discuss their proposals both with the NJR Research Officer and with other groups carrying out similar projects.
Full details of the NJR’s research application pathway, together with detailed guidance notes for applicants, can be found at www.njrcentre.org.uk.