Examples of current and past research projects with involvement

The Student Patient Alliance (SPA) is an exciting R2P2 initiative to integrate patient involvement in the training of our research students.

SPA aims to put each rheumatology PhD student in contact with one or more patient research partners to informally facilitate patient involvement in their research project and to develop their skills in working and communicating with members of the public.

It is hoped that the collaboration is mutually beneficial for students and patient research partners. Many research students do not have a clinical background, and may have very limited knowledge about the disease area they are researching. Learning about patients’ experience of the disease can help them understand the relevance of their research and identify priorities for future research.

Patient research partners involved in the scheme can learn about and support cutting-edge research that is relevant to their condition and students can learn from patient insight and develop their skills in public involvement and engagement.

The pilot of SPA was a big success and both students and patients speak highly of it. In September 2020 it was extended to include all new rheumatology PhD students and additional patient research partners. If you are a rheumatology research group PI or research student and would like to learn more about SPA please  contact us or complete the form to request patient support.

Recent advances in genetic science and technology have increased the possibility that the development and severity of diseases such as rheumatoid arthritis can be predicted before any symptoms occur. This provides exciting opportunities to develop strategies for disease prevention, and facilitates early diagnosis and effective treatment. It is therefore likely that in future years, more and more people will have opportunities to access information about their genetic makeup, and the likelihood that they will develop diseases. This raises important ethical concerns and questions about the management and evaluation of genetic information, both for health care providers and patients.

Mind the Risk was an international collaboration of researchers in philosophy, psychology, medicine, health economics and bioethics which aimed to provide answers to these questions, and to support the clinical application of genetic risk information. The project ran from 2014-2020, and was funded by the Swedish Foundation for Humanities and Social Sciences.

First degree relatives (children and siblings) of patients with rheumatoid arthritis are more likely to develop the disease than other members of the general public. Therefore they are likely candidates for initiatives to predict the development of this disease, and for preventive interventions. However, patients may have considerable anxieties about approaching their relatives about their risk of rheumatoid arthritis.

As partners in the Mind the Risk project, our aim was to understand the perspectives of both patients and their first degree relatives about risk of rheumatoid arthritis, risk communication, predictive testing, and preventive interventions. We employed a range of research methodologies, including qualitative interviews and large scale surveys.

MTR survey

Several members of R2P2 have been working with the researchers to develop a survey study to explore people’s opinion about tests that predict someone’s risk of developing rheumatoid arthritis in the future. The survey also looked at how likely people with rheumatoid arthritis are to pass on information to their relatives about their risk of developing rheumatoid arthritis. There were two versions of the survey, one for patients with rheumatoid arthritis and one for their relatives.

Our patient research partners have made a huge contribution to this particular study. For example, as a result of their input we:

• Changed the content and design of the survey, omitting difficult questions and spreading the questions out to make the survey easier to read. We also included space for respondents to write in their own words how they feel about the issues raised in the survey.
• Split the survey for patients into two halves, so respondents could take a break if they wanted to. We also included table of contents to inform respondents what kind of questions were included in the survey so that they could decide in advance whether they wanted to complete the survey.
• Approached patients during visits to clinic, rather than by mail, so that they had an opportunity to raise any concerns with a member of their healthcare team.
• Did not approach patients who had been recently diagnosed with rheumatoid arthritis and who were coming to terms with their own diagnosis and treatment.

Patient research partners further developed a lay summary of a grant application to Versus Arthritis to fund a PhD student.

Recruitment for the Mind the Risk surveys has now closed as we have reached our target recruitment for both surveys. The MTR project itself officially finished but analysis and writing of articles is of course ongoing. Also Imogen Wells, the PhD student funded by Versus Arthritis will continue working on the survey results and conduct additional studies. Watch this space for some key findings!

A huge thank you to those patient partners who continue to support Mind the Risk!

The Rheumatology Research Group at the University of Birmingham is part of the Versus Arthritis funded Research into Inflammatory Arthritis Centre (RACE) Versus Arthritis. This internationally important Centre also includes Rheumatology groups from the Glasgow, Newcastle and Oxford universities. RACE is now in its second cycle of funding from Versus Arthritis, with the current cycle running from 2019-2024.

We believe that only by working together seamlessly to discover why and how the body’s immune system attacks the joints will we achieve our shared goal of finding a cure for RA.

Researchers from across these universities have established an innovative collaborative approach that is significantly advancing our understanding of rheumatoid arthritis (RA) and other forms of inflammatory arthritis (e.g. psoriatic arthritis). The core themes of our current research programme are to understand:

1. Why and how RA first becomes established. We especially want to understand how the processes that cause RA vary between different patients. We hope that understanding this will allow us to develop treatments tailored to individual patients groups which can reset the immune system to function normally again.
2. Why current treatments are ineffective for some people. Our other priority is to understand why some people’s RA responds only partially or not at all to the wide range of available treatments. We hope that understanding this will lead to discovering new ways of providing more effective treatments for people with resistant disease.

The work of RACE has led to, and benefitted from, collaborations with other academic institutions and drug companies globally. Crucially, we are committed to meaningful involvement of patient partners in our research activities at all levels, from representation on our management group to advising our PhD students (through the Student Patient Alliance), ensuring the relevance and impact of our research.

Presentation about RACE at the 2019 R2P2 annual meeting

Professor Andy Clark, Professor of Inflammation Biology and one of the Principal investigators involved with RACE, gave a talk about RACE (both RACE 1 and RACE 2) at the 2019 R2P2 annual meeting. View Professor Andy Clark's presentation slides.

The PREFER IMI project looks at how and when it is best to perform and include patient preferences in decision-making during the medical product life cycle. PREFER is divided into four 'work packages'. The methodology work package looked at the concerns stakeholders have around the use of patient-preference studies. Based on their findings, they have made recommendations about what methodologies to use in case studies that the case study work package will design and carry out. After evaluating the case studies, the recommendations work package will take over and draft recommendations based on the work. The management work package will make sure this work is done on time.

The PREFER Rheumatoid Arthritis Case Study

The RA case study has to answer a number of clinical and methodological questions relevant to the PREFER consortium. It has already been established that very early treatment of RA is associated with improved outcomes, including reduced joint damage. There is now considerable research interest in the idea of treating ‘at risk’ individuals in the preclinical and earliest clinically apparent phases of RA to assess whether a relatively short course of therapy will prevent or delay the onset of RA in these individuals. The current research involves first degree relatives of RA patients as a group with an elevated risk of developing RA in the future who are currently being studied in several preventive and prospective studies. Understanding the preferences (i.e. what factors impact on someone’s decision to take a treatment or not) of ‘at risk’ groups is especially important in preventive contexts, where there is uncertainty around not only the effectiveness and safety of a particular treatment strategy, but also around the individual’s actual baseline risk of developing RA in the future.

Understanding of the preventive effectiveness of existing treatments for RA continues to grow and the development of entirely new treatments has become a real possibility with increasing understanding of the causes of RA. It is therefore paramount to gain knowledge of the preferences (i.e. which factors will determine if someone will take a treatment or not) of ‘at risk’ individuals around both existing RA treatments adapted for preventive purposes and (as yet) hypothetical new ones will be valuable to inform the development and regulation of efficient preventive strategies for RA. In addition, it is also important to understand societal views of these preventative treatments by assessing treatment preferences in the general public and asking them to imagine being at an enhanced risk of developing RA. So in addition to asking first-degree relatives about their preferences around these proposed hypothetical treatments, we will ask a panel of the general public for their views as well.

There is a whole host of methods out there designed to assess an individual’s treatment preferences and in addition to answering the clinical question outlined above we are tasked with comparing two commonly used methodologies, namely Discrete Choice Experiment (DCE) vs Probabilistic Threshold Technique (PTT). In a nutshell it involves the participant making a number of choices between different treatments based upon different levels of treatment attributes (basically pros and cons of each treatment: e.g. has no side effects, a 10% chance of mild side effects, a 50% chance of mild side effects). This will take the form of an online survey. The content of this survey has been, in part, informed by focus groups and interviews (as is standard practice).

So the case study is divided into two phases:

1. Focus groups: A focus group/ interview study with first degree relatives of RA patients and members of the general public has been conducted to explore attributes (e.g. how is the medication administered, frequency, side effects, etc) relevant to treatments currently under investigation for the prevention/ early intervention of RA and to inform the selection and framing of attributes to be used in a quantitative preference study.
2. Survey: The quantitative preference study investigates treatment preferences of individuals at risk of RA and members of the public and compares between DCE and PTT in terms of their ability to elicit preferences for preventive treatments. Together with our international patient research partners, including members from R2P2, clinicians and the PREFER RA core team, this survey has now been developed The survey will further assess things like health literacy, numeracy, health locus of control and illness perception as well as attitude towards medication, perceived risk of developing RA and attitudes towards and understanding of RA to investigate the effect of these factors on a person’s treatment preferences. The survey has been put in an online format and we are about to pre-test. Those of you who are involved with PREFER can expect an invite for pre-testing shortly! However, the current health crisis will affect recruitment and we will have to wait for a few months before implementing the survey.

The National Institute for Health Research (NIHR) have funded a Biomedical Research Centre (BRC) in inflammatory disease in Birmingham. This is a collaboration between the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust to make scientific discoveries that will be translated into new treatments for patients with inflammatory and autoimmune joint, muscle, bowel and liver diseases. By involving patients and the public in distinct special interest groups, we ensure that our research is of the highest quality.

Three Patient and Public Involvement (PPI) groups support this research;

1. R2P2 (concerned particularly with Rheumatoid Arthritis and Sjögren’s Syndrome). Involved in research conducted within the Inflammatory Arthritis theme,
2. Liver and GI PPI Reference Group (concerned with liver and inflammatory bowel diseases). Involved in research conducted within the Inflammatory Gastroenterology theme and
3. Muscle Health Research Group (concerned with inflammatory effects on muscle mass/loss and how this is affected by ageing). Involved in research within the Inflammatory Sarcopenia theme.

Members of these 3 groups have an open invitation to attend each other’s meetings. They regularly share ideas via the BRC’s PPI and Engagement Manager (Laura Chapman) and leads from each group attend quarterly meetings with her. A patient representative from each group sits on the BRC’s Executive committee, which usually meets twice a year. This is of course in addition to supporting/collaborating on individual studies within the themes.

About this form

As researchers from the University of Birmingham, we are interested in hearing the views of family members (especially the brothers, sisters, sons and daughters) of people who have been diagnosed with rheumatoid arthritis (RA). We have developed an information leaflet specifically for relatives of people with RA who might be at risk of developing RA themselves, addressing a number of issues around this increased risk. The leaflet is entitled ‘Am I likely to develop rheumatoid arthritis? A guide for relatives of patients with rheumatoid arthritis’ and covers topics such as ‘What is RA?’; ‘Am I at risk of RA?’ and ‘What can I do to find out more about my risk?’

• Download leaflet (.pdf)

We would like to invite you to give us your feedback on the leaflet using an anonymous online evaluation form. Before you do so, please read the participant information sheet. If you have further questions please contact either Dr Gwenda Simons or Dr Marie Falahee on +44 (0)121 3713235/ +44 (0)7505626368 or email g.simons@bham.ac.uk.

Please note that taking part in the online evaluation is voluntary, and it is entirely up to you to decide if you want to take part. However, please note that the form cannot be retracted once submitted due to its anonymous nature (i.e. you do not get a participant number or such like and you do not enter personal details such as your name or address).

• Download participant information sheet (.pdf)

Complete online evaluation now

Primary Sjögren’s syndrome (pSS) is an autoimmune condition primarily affecting fluid secreting glands. Inflammation within the glands reduces the production of tears and saliva, therefore, the characterising symptoms of pSS are dry mouth and dry eyes. Other symptoms include joint pain, bowel problems, extreme fatigue, and sleep disturbance. This range of symptoms, particularly dryness of the eyes, mouth and vagina can be associated with complications such as eye and mouth infections, tooth decay, peripheral neuropathy and cancer of the lymphatic system occurring in 5% of patients. The needs of patients with pSS are complex, however, very little patient focus research has been conducted in this area.

The early diagnosis and treatment of pSS may be beneficial as residual glandular tissue not yet destroyed by the inflammation process can respond to medication to stimulate fluid production. Also, disease modifying drugs may be used more routinely in the future to limit the damage cause by inflammation and prevent further destruction of glandular tissue. However, evidence from other conditions (particularly rheumatoid arthritis) illustrates that disease modifying drugs work best in the earliest phases of disease. However, little is known about the length of time between symptom onset, and the patient initially accessing help for symptoms. Furthermore, little is known about how long it takes general practitioners to recognise pSS, and make referrals to specialist services including Rheumatology and dental specialists.

University Hospitals Birmingham Foundation Trust (UHBFT) currently oversees the care of more than 100 patients with pSS, in addition to patients who have developed Sjögren’s in association with other auto-immune diseases. In addition, UHBFT is increasingly being recognised as a centre of clinical excellence in pSS, and we are keen to ensure that patients with pSS receive the best care and that their priorities and needs are recognised.

The aim of our research is to explore access to care, coping strategies and ways of promoting self-management in patients with pSS. Through qualitative interviews with patients with we will explore access to care and self-management behaviours amongst people with pSS. We will also undertake a cross-sectional survey of newly diagnosed patients with pSS exploring access to care at the onset of illness.

Public and patient involvement in the design and development of health services is vital, therefore, we are keen to develop our partnerships with patients and relatives.

In collaboration with our patient partners we intend to identify the priorities of patients, and the areas of research which will have the largest benefit to patients.

The EuroTEAM (Towards Early diagnosis and biomarker validation in Arthritis Management) project was funded by the European Union (FP7 Health Programme) for 4 years and started in November 2012. Through EuroTEAM, approaches were developed to predict the onset of rheumatoid arthritis (RA) in people who do not yet have the disease. Ultimately, this will help in the development of treatments to prevent people from getting RA in the first place. The project was co-ordinated by Professors Chris Buckley and Karim Raza at Birmingham University and various members of the Rheumatology Research Group were involved in this pan-European project through a number of work packages (i.e. separate research projects). 

EuroTEAM involved patients and family members as research partners. In this video Prof Karim Raza discusses the importance of involving patients in medical research and how rheumatoid arthritis patients are (were) involved with the EuroTEAM research project.

A good example of a successful project involving patient research partners is the DELAY project. The DELAY project assesses reasons for delay in GP consultation reported by patients with Rheumatoid Arthritis (RA). The project has three phases. In the first, a questionnaire assessing reasons for delay was developed and validated. The second assessed the reliability of the questionnaire over time, by administering it to people with RA at two time points. The third surveyed a large cross-sectional sample of people with inflammatory arthritis to assess the reasons for delay in GP consultation in relation to socioeconomic and demographic variables.

The DELAY patient research panel has had a lot of impact on the project itself and the development of future research. For example, the need for the RAPID project has, in part, been identified by members of the user group supporting the DELAY study.

The Rheumatoid Arthritis the Public InformeD (RAPID) project started in December 2012 and officially finished at the end of 2015. It explored the perceptions of Rheumatoid Arthritis (RA) amongst members of the general public, their knowledge of RA and their reaction to the presentation of RA symptoms. RAPID is collaborative research between researchers from the University of Birmingham (Professor Karim Raza, Dr Rebecca Stack, Kanta Kumar & Dr Gwenda Simons) and the University of Keele (Professor Christian Mallen).

Rheumatoid Arthritis (RA) is a chronic condition which causes inflammation of the joints which can lead to joint destruction and has a profound impact on the lives of those suffering with it. Symptoms include joint pain, swelling and stiffness. Early diagnosis and treatment of RA results in better long-term outcomes, however people often delay for considerable periods before seeking help for RA symptoms. 

The RAPID project investigated perceptions and knowledge of RA amongst members of the general public without RA. Using interviews and surveys we further looked at how people would respond to experiencing the first symptoms of RA and investigated why people might or might not seek help for the symptoms of RA. Comparisons were also made with other illnesses such as bowel cancer and angina to understand better whether certain symptoms are easier to recognise and are associated with more rapid help seeking than others. 

This research has given us a better understanding of how people might react when they are in the very early stages of RA. The findings show that people often fail to recognise their symptoms as being indicative of a serious underlying condition. For example, symptoms are often confused with those of osteoarthritis or simply ascribed to getting older. The symptoms of diseases such as bowel cancer and angina on the other hand, are readily recognised and deemed serious enough to seek help promptly. Furthermore, due to recent public health campaigns, most people understand the potential consequences of ignoring the symptoms of bowel cancer and angina. It is likely that the misunderstandings surrounding the symptoms of RA will lead people to delay help-seeking. 

This project has led to a number of publications and a summary of one looking at the pathway to consultation for symptoms of RA and other serious health conditions can be found here.

Involvement from R2P2 patient research partners in RAPID

RAPID had an active patient research panel of around 10 people. We have had a number of meetings and consultations with members of the panel. Several important changes to documentation and research design have occurred as a result. Members have further been involved in the development of lay summaries of the key research findings. Members also advised us on the content of the RAPID website and have had input in the development of public awareness interventions.

Patients’ beliefs and perceptions play an important role in shaping their decisions about starting and continuing to take medications. Several studies have documented that there are differences between individuals from different ethnic groups in the way that medications are viewed. Poor adherence to prescribed medicines is an important issue as about 40 percent of patients with chronic diseases do not take their medications as prescribed. Treating conditions such as rheumatoid arthritis (RA) with disease modifying anti-rheumatic drugs (DMARDs) significantly improves clinical outcomes. Recent work from our group has investigated beliefs about medicines in RA patients of South Asian and White British origin. Compared with patients of White British origin, those of South Asian origin had more concerns about DMARDs and viewed medicines in general as being harmful and overused. Of the variables that we studied, the one that associated most strongly with a belief that medicines in general were harmful and overused and that DMARDs in particular were of concern was ethnicity. In the first part of the project we assessed whether these beliefs had an impact on adherence to medicines using quantitative approach. In this study we want to investigate the barriers to poor medication adherence using qualitative approach. Patients who took part in the 1st phase and gave permission to be contacted will be invited for an interview to explore barriers and facilitators to medication adherence. Patients will be invited for a one to one, one hour interview to discuss issues surrounding medication adherence. Interviews will be audio recorded and transcribed by the researcher.

Kanta Kumar is a doctoral research fellow and this research forms part of Kanta’s PhD work. Other projects are currently being developed. For information about this and other projects, please contact Kanta Kumar