Social Care in Rheumatoid Arthritis: Linking regional data to improve the care for patients with rheumatoid arthritis

Musculoskeletal diseases are the second most common cause of years lost from disability globally. Rheumatoid arthritis (RA) is the most common inflammatory arthritis and is itself associated with significant levels of long-term disability and substantial health care costs. With changing trends in care for RA over the last two decades and in particular the advent of more effective biologic treatments, providing more stable long-term disease control, the care provision for patients with RA has increasingly shifted to the community and away from the acute hospital setting. This trend has accelerated since the emergence of SARS-CoV-2 and the COVID-19 pandemic.



However, the provision of services in the community which support patients with RA is not clearly structured and, little is known about the long-term social care needs of these patients to inform the delivery of care. For example, the division of care between informal (family, friends and neighbours) and formal care, and the extent to which formal care is funded privately, supported by local authorities or by the third sector has not been established.



Previous work from our team has suggested that patients with musculoskeletal pain are very heavily reliant on informal care. This was also evident in our recent survey (MSK-Shield) of patients with rheumatic diseases in the early stages of the pandemic. This points to there being a strong likelihood of important unmet care needs together with inequalities in level of support provided to patients with RA in the community that will negatively impact on long-term wellbeing and quality of life.



For the last 30 years, the Norfolk Arthritis Register (NOAR) has been clinically reviewing a cohort of patient with early onset inflammatory arthritis. the register runs as a collaboration between UEA and the University of Manchester (UoM) as part of the Centre for Epidemiology. NOAR is the largest register of its type globally and holds data on 5,200 patients 1,200 of whom are active on the register currently. Data form the register has been influential in forming policy on delivering care in RA. The recent availability of Norfolk County Council electronic social care record data (facilitated by NODA) now opens the possibility of enriching the NOAR cohort with new insight into the provision of social care to patients with RA.



This project will lay the foundations for record linkage between these datasets establishing the areas of most relevance to patients with RA, the willingness of patients to consent to record linkage, and the governance arrangements needed to sustainable linkage over time.



Linking NOAR and Norfolk Social Care that will deliver a uniquely important resource for understanding the care needs of patients with RA now and inf the future. This work will enable patients and carers to be directed to appropriate services and support. In the wake of COVID-19, getting the right support to those who need it is more important than ever.

Workpackage 1 will investigate social care use among patients currently enrolled in the Norfolk Arthritis Register. A cross-sectional survey on current social care use will be sent to NOAR participants. The survey (available to be completed in paper and electronic formats) will evaluate their health and social care needs, and current levels of support and provision. As part of this survey will examine patients’ willingness to consent to allowing access to current and future social care records.



In collaboration with NODA, NCC, Workpackage 2 will investigate the governance framework needed to link routinely collected social care data to NOAR.

Describe and quantify social care use in NOAR participants through cross-sectional survey

This information will be shared with patients, arthritis charities, and policy makers through our established networks including the UEA Health and Social Care Partners and in Manchester with have MICRA – Manchester Institute for Collaborative Research in Ageing, and Policy@manchester

Publication in peer reviewed journals and presented to scientific conferences, in both social care and rheumatology fields

The linkage process will be facilitated by NODA. Learning from the governance processes will be shared with other clinical research teams across the country who are interested in developing a profile of interdisciplinary research between health and social care.

We will use this knowledge to establish a permanent link to social care data for new recruits to the NOAR to provide a uniquely valuable research resource, and of national and international significance.