RHEUmatic and musculoskeletal conditions: geographical MApping of Prevalence and outcomeS

This project will investigate the prevalence and outcomes of rheumatic and musculoskeletal disease (RMD) in rural and urban areas.

Delays in diagnosis and treatment are associated with poorer outcomes for RMD. Up to a third of the UK population live in rural areas, but most specialist health services are in urban areas. Poor transport infrastructure makes healthcare difficult to access, particularly for those without cars, and rural communities face greater challenges in recruiting and retaining healthcare workers.

Rural populations are older and the average age is increasing faster than in urban areas. Musculoskeletal diseases are the most common cause of disability in the elderly, and negative effects may be compounded for an older rural population by social isolation and lack of carers. In spite of this, the prevalence and outcomes of RMD in rural versus urban areas is largely unquantified.

The study aims to map the prevalence and outcomes of RMD in rural compared with urban areas in Scotland and Wales. With large rural populations and unique healthcare linkage capabilities, these provide ideal settings to examine geographical differences in RMD outcomes.

Within the National Safe Haven network in Scotland and the Secure Anonymised Information Linkage (SAIL) databank in Wales, primary care datasets will be linked to national datasets collected at the community, GP, ambulatory and hospital level. Primary care data will include health conditions, prescriptions, appointments, referrals, and socioeconomic and lifestyle details relevant to the patient's health. Secondary care datasets will provide information on hospital inpatient and outpatient records, A&E, mental health, cancer registry and mortality data. Complementary datasets including Census data, WEALTH (Welsh Employment and Linkage to Health) and Health Wise Wales will also enable the team to explore wider determinants of health.

Finally, to identify the key priorities in diagnosis, treatment and healthcare access for rural RMD patients, the researchers will undertake a priority-setting survey, informed by a series of focus groups with patients from across the UK. In conjunction with Rheumatosphere we will hold a series of stakeholder engagement events to present study fundings, gather feedback and disseminate key study recommendations.

Our patient and professional partners will continue to play an integral role at all stages of the study and engage in a number of different ways to ensure outputs and recommendations are relevant to key stakeholders.

The study has produced the following outputs so far:

Summary report to funders

During a recent visit to the Epidemiology Group, we were delighted to present our latest research findings. As part of these presentations, we produced a poster that summarised some of the key findings from the RHEUMAPs study.

You can view and download the poster here: 

• Hollick, Brophy, Bennett, Choy, Fry, James, Macfarlane, Mcfarlane, Moir, Parker, Pedrick-Case, Seabourne, Stelfox, Stevenson and Black, Supporting delivery of rheumatic and musculoskeletal services to meet the needs of local populations 
  
  

PhD student Alison Maciver also presented on her work which highlights key issues related to social engagement for people with rheumatic and musculoskeletal conditions - social engagement being a key issue initially identified within the RHEUMAPS study.

You can view and download the poster here:

• Maciver, Macfarlane, Hollick, Existing measures of social engagement do not assess the range of impacts identified as important to people with Rheumatic and Musculoskeletal Disorders
  

RHEUMAPs Care Priorities Report

We are delighted to launch our care priorities report. This is based on findings from our national survey, co-designed with patient partners, and interviews with people with a broad range of rheumatic and musculoskeletal conditions across the UK. In the report we focus on what we have found out about individual priorities for care, the extent to which people were satisfied with the ability of current services to meet these priorities and factors predicting dissatisfaction with services. We also discuss the resources and components of service that are important to meet these needs.

You can read the full report in our ' Technical reports and summaries ' section here .

Work Support Resources Report

Rheumatic and musculoskeletal conditions greatly impact people's working lives. They are one of the most common causes of days lost from work in the UK and people deciding to stop work earlier than intended.

Several resources and interventions are available to enable healthcare professionals to better support their patients to work well. In the UK numerous musculoskeletal charities websites and other online resources, also provide work-related information and support for patients. However, people living with rheumatic and musculoskeletal conditions report that consultations with healthcare professionals are mainly focused on medical aspects of their condition and medications, and that work issues are rarely discussed. Support with work-related challenges often remains an unmet need for people with living with these conditions.

As part of the RHEUMAPs study we explored the awareness and use of work-related support services amongst people with rheumatic and musculoskeletal conditions and online work resources provided by UK musculoskeletal charities to identify specific areas for improvement.

You can read the report here .

RHEUMAPs Stakeholder Workshops (February / March 2024)

We had a fantastic attendance at our recent RHEUMAPs workshops in Cardiff and Edinburgh, with representation from a broad range of different stakeholders including patients, clinicians, NHS and third sector organisations, and devolved nations government. We were delighted to make many new connections. The workshops highlighted some of the key challenges and opportunities to using administrative healthcare data for service planning, and the many ways in which our findings can feed into national strategies to improve care for people with rheumatic and musculoskeletal conditions. We are currently gathering all the information together and plan a further stakeholder engagement event later this year.

Mapping prevalence and health outcomes for people with rheumatic and musculoskeletal conditions across Wales

Dr Rosemary Hollick recorded the following presentation for the MSK innovations in Wales on World Arthritis Day conference on the 12^th October 2023. The invited audience included healthcare professionals, health decision makers, Health Minister and Chief Medical Officer, Third Sector.

You can watch the recording of the talk below:

Care priorities for people with rheumatic and musculoskeletal conditions and factors predicting dissatisfaction with care

In April 2023, the team gave a presentation on care priorities for people with rheumatic and musculoskeletal conditions and factors predicting dissatisfaction with care at the British Society of Rheumatology Conference in Manchester. Please click on the link below to read the abstract:

• OA24 Care priorities for people with rheumatic and musculoskeletal conditions and factors predicting dissatisfaction with care | Rheumatology | Oxford Academic (oup.com)

You can complete an Expression of Interest form by clicking here (please enter 'RHEUMAPS' in answer to question 8 on this form), to be kept up to date with all aspects of the study and be contacted if any further opportunities to get involved arise.

Alternatively, you can email us on rheumap@abdn.ac.uk .

• Survey link

Chief investigator

• Dr Rosemary Hollick

Co-investigators

• Professor Gary Macfarlane
• Professor Corri Black
• Professor Ernest Choy (University of Cardiff)
• Professor Sinead Brophy (University of Swansea)
• Dr Louise Bennett (University of Glasgow)
  

Rheumatic and musculoskeletal diseases (RMDs) represent a significant proportion of primary care consultations. Many people are managed exclusively in primary care, whilst others also receive care in specialist services. Delays in diagnosis and treatment are associated with poorer clinical and work outcomes, and many people with RMDs are older and have other complex health care needs. Furthermore, up to one third of the UK population live in rural areas which presents additional challenges to the delivery of timely and equitable healthcare services. However, local resource allocation is largely informed by judgement rather than evidence.

This study aims to determine the prevalence of RMDs across rural and urban areas in Scotland, their health outcomes and patterns of healthcare use. Our findings will be critical to support vital healthcare service planning and decision-making for those with RMDs to meet immediate and future health and care needs.

Using a combination of diagnostic, symptom and monitoring READ codes, we will identify patients with selected RMD conditions from primary care. We will also collect their socio-demographic, primary care healthcare use, lifestyle (smoking, alcohol) and relevant co-morbidity data. Albasoft (a Trusted Third Party (TTP) provider) will identify eligible patients and extract primary care data required and transfer the data securely to the National Safe Haven. The cohort will then be linked to NHS databases within the National Safe Haven (eDRIS) (outpatient attendances, hospital and out of hours care and community prescribing). We are gathering similar data in Wales in collaboration with the University of Swansea.

This study has been approved by the Public and Privacy Panel for Health and Social Care in Scotland (REF 1819-0286). You do not have to notify individual patients. This is because technical and organisational measures that respect the principle of data minimisation are in place. All data will de-identified and researchers will only be able to access this data in the National Data Safe Haven.

Albasoft Ltd will be acting as a TTP and data processor on your behalf as data controller to ensure that all data is safely and securely extracted using your existing Escro software.

No administration time will be required from the practice for this study and an ex-gratia payment of £100 will be paid by the University to the practice in acknowledgement of the time taken to review and complete the study agreement.

Would your practice like to participate?

If so, please reply to rachel.kerr@albasoft.scot expressing your interest and you will be forwarded a link to an online study agreement form which will only take a few minutes to complete.

GDPR Compliance Statement

The lawful basis for processing data is Article 6, 1(e) of the General Data Protection Regulation (GDPR): the processing is necessary for a task in the public interest or for official functions, and the task or function has a clear basis in law. Conduct of research is one of the statutory functions of the University, and the conduct of research to improve the delivery of health care is a task carried out in the public interest. The lawful basis for the processing of special category personal data is Article 9, 2(j):

Processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. The processing for research purposes meets the safeguards required by the GDPR Article 89 and in the Data Protection Act 2018, section 19.

• RHEUMAPS Study - Letter for GP Practices
• Further Details on Data to be Collected
• PBPP Approval

Participant information documentation will be uploaded here shortly.

Rheumaps Patient Priority Survey

This notice explains how the University of Aberdeen handles your personal information when you register your interest in research activities that take place as part of the RHEUMAPS Study within the Epidemiology Group and the Aberdeen Centre for Arthritis and Musculoskeletal Health.

Who we are

The organisation responsible for your personal information in terms of data protection legislation is the University of Aberdeen.

If you have any questions about the University's handling of your information, or your rights under privacy laws, you can contact the University Data Protection Officer in the following ways:

• By email: dpa@abdn.ac.uk
• By post: King's College, Aberdeen, AB25 3FW
• By telephone: 01224 272596

Information we collect and use about you

You will have provided us with information such as your name, telephone number and/or email address

Why we process this information, and our lawful basis

We collect and use your personal information with your consent in order to send you information about taking part in activities that will be used to conduct academic and scientific research with researchers at the University of Aberdeen.

The University is authorised to undertake research under powers provided by the Universities (Scotland) Acts, and also undertakes research in the public interest

Disclosing your information

We will not disclose the information you provided on the sign-up form to any other organisation, other than when required do so by law or with your consent (either verbal or written).

The external suppliers we use for IT support may have access to your personal information in order to provide that service to the University. Our third-party supplier arrangements are regulated by contracts designed to protect the information and limit the way it is used.

How long your information is kept

We will keep information about you for a maximum of 2 years after your last contact with us.

Your rights

You have the right to withdraw your consent at any time for the University to continue to process your information. If you wish to withdrawn consent, please contact us at the following address:

Epidemiology Group
University of Aberdeen
AB25 2ZD

Email: epidemiology@abdn.ac.uk

You also have rights to obtain a copy of your personal information, and to ask us to correct inaccurate or incomplete personal information. Under certain conditions, you can ask us to restrict the way we use your personal information, erase your personal information and object to the University processing your personal information. These rights depend on our lawful basis for processing your personal information. This means we may not be able to comply with your request in every case. If we cannot do as you ask, we will always reply to you and explain our position.

There is no charge to make a request, but we may need evidence to confirm your identity before we respond in full.

You can ask about your privacy rights or make a request about your personal information by contacting the University Data Protection Officer:

• By email: dpa@abdn.ac.uk
• By post: King's College, Aberdeen, AB25 3FW
• By telephone: 01224 272596

If are dissatisfied with the way the University has handled your personal information or dealt with your data protection issue, you have the right to lodge a complaint with the Information Commissioner. The Information Commissioner's Office can be contacted via their website at www.ico.org.uk/concerns .

Privacy notice for data linkage

The University of Aberdeen is the sponsor for this study based in the United Kingdom. We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Aberdeen will keep identifiable information about you for a minimum of 10 years after the study has finished. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

You can find out more about how we use your information at https://www.abdn.ac.uk/privacy or by contacting the University's Data Protection Officer on dpa@abdn.ac.uk .

The University of Aberdeen will collect information from you for this research study in accordance with our instructions. The University of Aberdeen will use your name, date of birth and contact details to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Individuals from the University of Aberdeen and regulatory organisations may look at your medical and research records to check the accuracy of the research study. The only people in the University of Aberdeen who will have access to information that identifies you will be people who need to contact you for the study or audit the data collection process.

The University of Aberdeen will keep identifiable information about you from this study for a minimum of 10 years after the study has finished. The University of Aberdeen will collect information about you for research purposes from, for example, Information Services Division (Scotland), the NHS Central Register and other NHS organisations. This information will include your name, date of birth, Community Health Index (CHI) number/NHS/hospital number, contact details and health information, which is regarded as a special category of information. We will link the above information to the survey information gathered on this study for research purposes.

If you have any questions or comments about the study please contact rheumap@abdn.ac.uk .