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Wellbeing, Inclusion and Culture
Exeter Collaboration for Academic Primary Care (APEx)
Theme Lead: Professor John Campbell
We have designed and managed large, pragmatic clinical trials and used other robust methods to develop and evaluate alternatives to face-to-face GP consultations including telephone triage by GP or practice nurse and video consulting. This work has expanded to include a study of digital facilitation for online primary care services. We are considered one of the leading groups in the country for research on primary care workforce examining the changing GP workforce, primary care teams and the role of multispecialty community providers.
We have 20 years of experience developing valid and reliable primary care performance measures, focussing on the accessibility and patient experience of care. In collaboration with Roland (Cambridge), we have led the design/ evaluation of the English General Practice Patient Survey (GPPS), widely accepted as the most relevant barometer for informing commissioning policy and practice within primary care, resulting in >35 major publications (Campbell, Abel).
We have conducted world-leading research on the appraisal, development, implementation and evaluation of Patient Reported Outcome Measures (PROMs) in Clinical Practice (PROMETHEUS, Valderas). We are leading a Cochrane review of the impact of using PROMS in Clinical Practice in collaboration with Gibbons (MD Anderson, US) (Valderas).
We have led the development of the Patient Reported Experiences and Outcomes of Safety in Primary Care (PREOS-PC) as part of the collaboration with the NIHR National School for Primary Care Research, which has been translated and implemented in Spain and Brazil (Valderas). We are also leading the development of a survey of experiences and outcomes of Primary Care for patients with chronic conditions as part of the Patient-Reported Indicator Surveys (PaRIS) initiative for the Organization for Economic Development and Co-operation (Valderas).
A considerable body of research focuses on patients with mental health problems, especially treatment-resistant depression, and patients who are depressed after an acute cardiac event. Other studies include a process evaluation of the ARRISA trial which aims to reduce hospitalisation and death of patients with asthma by identifying, flagging and prioritising care for those at-risk in primary care. Additional trials of community-based weight loss interventions to prevent diabetes, and vascular risk assessment for patients unable to have upper arm measurements are also being conducted.
Women’s genital prolapse and incontinence, Gondar, Ethiopia LA Priority Setting Partnership
Whether face-to-face, telephone, video, or web-based interactions, consultation and related communication remain at the heart of the interaction between primary care professionals and their patients. Facilitating access to such interactions (and providing an evidence base for their use), as well as access to other online services provided by the NHS requires an evidence base. We can’t just ‘assume’ that these alternatives are ‘a good thing’. On this page are some projects where we’re trying to support the NHS in providing evidence around alternative means and routes to accessing care.
COVID-19 came into global healthcare like a hurricane in November 2019. By March 2020, the UK was in lockdown. The University of Exeter has delivered many high-quality projects around the COVID-19 research agenda. In primary care, we are leading BRACE: the UK’s largest trial, funded by the Bill and Melinda Gates Foundation and the Peter Sowerby Foundation, examining the potential for BCG in mitigating the effects of COVID-19 – working in collaboration with a major international consortium of resercahers. We’re also involved in other major studies listed below.
Theme Lead: Professor Sallie Lamb
We have led research on the clinical and cost-effectiveness of different treatment pathways in primary care. Our research has focused on a range of interventions for the prevention and management of falls, fracture, and frailty.
We are also developing and implementing novel, cost-effective approaches to managing high-volume musculoskeletal conditions in primary and emergency care settings.
Our research aims to co-produce and evaluate interventions for the management of musculoskeletal pain; the most common disabling condition of later life.
We also aim to co-produce and evaluate interventions aimed at preventing falls in older people. These interventions aim to improve mobility, reduce pain, enhance quality of life, independence, and reduce the use of hospital and health service resources.
Linking to vulnerable populations, we were one of the first groups to use primary care settings successfully to recruit large numbers of people with dementia into trials.
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We have a substantial programme on the epidemiology of multimorbidity, and are translating this into new interventions. We have contributed to the development theory for the study of multimorbidity for over a decade and have contributed to developing the evidence base for the epidemiology of multimorbidity in England, Ireland, Spain, Australia and other countries.
Our current research aims to develop further the evidence base on the epidemiology of multimorbidity (Genetic Evaluation of Multimorbidity towards INdividualisation of Interventions – GEMINI) (Valderas and Lamb) and on interventions for organising and delivering care for people with multimorbidity for increased efficiency of the health care delivery and improved patient experience and GP satisfaction, including research to improve our understanding of how multimorbidity impacts on the management of patients with suspected cancer (SPOCC) (Valderas & Abel), and how using Patient Reported Outcomes can improve care for people with multimorbidity (PROMETHEUS, Valderas, Measuring the experience and outcomes of primary care).
Theme Leads: Professor Willie Hamilton, Professor Richard Neal, Associate Professor Gary Abel
We are internationally renowned for our research on the epidemiology of diagnosis and the diagnostic process for cancer, including:
We use many methodologies including analyses of large NHS datasets; systematic reviews and individual participant data meta-analyses; vignette studies; diagnostic accuracy studies; discrete choice experiments; and qualitative work.
The Discovery team have many collaborative projects, with current ones listed on the CanTest website. We have many previous projects, and six prize-winning ones have been selected here to show the diversity of subjects within cancer diagnosis that we do.
For more information on the team's cancer diagnosis work, see the DISCO programme.
The CanTest Collaborative, funded by a Cancer Research UK Catalyst Award, is an international team of primary care cancer researchers working on the early detection and diagnosis of cancer. CanTest’s rapidly growing portfolio includes over 40 active projects covering a range of different cancers, focusing on the ‘common’ cancers such as lung and colorectal, and the ‘hard to detect’ cancers such as pancreatic and ovarian. CanTest's research addresses many aspects of cancer diagnosis. Who should be tested for cancer? How should they be tested for cancer? Where should they be tested for cancer? How can the healthcare system offer the best level of testing?
CanTest ongoing projects
The Policy Research Unit funding has now been renewed for 2019-2024. The research is also supported by the NIHR's Applied Research Collaboration for the South West Peninsula (PenARC). PenARC aims to improve health through medical research directly addressing local health needs.
Visit the Ageing, Frailty, and Multimorbidity section for more information.
Theme Leads: Professor Barney Dunn, Dr Anna Price
Common mental disorders, such as depression and anxiety, are among the most frequently encountered and debilitating conditions in primary care; affecting about 5% of the population. Such conditions can occur in isolation, or in combination with other long-term conditions where they complicate management and are associated with worse health outcomes. Other conditions, such as dementia, are less common, but increasing in prevalence – and account for a very considerable proportion of personal distress, and health and social care costs in the UK. The majority of care for people with mental disorders is provided in primary care settings.
The work of this theme focuses on the development of interventions and models of care to improve the management and coordination of care for people with a range of mental disorders within the primary care setting, including work in Improving Access to Psychological Therapies (IAPT) Services.
Much of the work in primary care mental health cross-cuts with Primary Care Focused Health Service Research. We have produced work focussing on patients with mental health disorders in vulnerable groups especially – some are shown below to demonstrate the diversity of subjects within primary care mental health that we cover:
A best practice guide for health and social care professionals
Visit the REACH (Research in Ageing and Cognitive Health) website for a breakdown of research projects.
The ASsuRED Project - 5-year NIHR-funded programme that aims to develop and test a new intervention for people who present in Emergency Departments having harmed themselves (May 2019)
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Topic |
Project |
Details |
Output |
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Fellowship
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ADepT fellowship - Barney Dunn
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(NIHR Career development fellowship 14-19) | |
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Psychological intervention evaluation |
RfPB THRIVE trial bipolar |
(17-19: PI Barney Dunn) | |
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Older people Psychological intervention evaluation |
NIHR programme grant for applied research, £2,106,391.00, PI: C Ballard, April 2010 - July 2020 |
Antipsychotics Best Practice Guide Appendix
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Psychological intervention evaluation
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Assessing the effectiveness of Enhanced Psychological Care for patients with depressive symptoms attending cardiac rehabilitation compared with treatment as usual (CADENCE): a pilot cluster randomised controlled trial. | NIHR HTA programme grant, £458,964.60, PI: J Campbell, April 2014 - June 2018 | Publication |
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Psychological Intervention evaluation
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Mechanisms of Action of Group Interventions (MAGI) study. |
NIHR/MRC EME, £158,360, PI: Jane Smith, Jan 2016 - Aug 2017 | |
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Young people People with long term health conditions |
Improving the mental health of children and young people with long term conditions |
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| People with long term health conditions |
COINCIDE Trial. Develop and evaluate a collaborative care intervention for anxiety and depression for people with CHD and/or diabetes in primary care
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PI: Chris Dickens, Oct 2013 | |
| People with long term health conditions | CHOICE Programme. Investigate psychosocial contributors to the use of urgent and unscheduled care among people with long term physical health conditions | PI: Else Guthrie (Manchester), Jan 2014 | |
| Vulnerable people | Meeting the Mental Health Needs of Released Prisoners: the Role of the Probation Service. A Scoping Study | ||
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Older people
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Reducing urgent hospital admissions for residents of care homes | ||
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Older people
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Mapping service for people with dementia in the South West | ||
| COBRA Trial | |||
| Psychological Intervention evaluation | Combining behavioural activation with physical activity promotion for adults with depression: findings of a parallel-group pilot randomised controlled trial (BAcPAc) | Publication | |
| Psychological Intervention evaluation | PREVENT Trial. To establish whether Mindfulness-based Cognitive Therapy (MBCT) provides an effective alternative relapse prevention approach to maintenance antidepressant (m-ADM) in primary care settings for patients with a history of recurrent | ||
| Psychological Intervention evaluation | MIR Trial. Evaluate the benefits of adding mirtazapine to people who have failed to respond to first line antidepressants | PI: David Kessler (Bristol) |
Theme Leads: Dr Kristin Liabo, Beccy Summers, Georgie Jenkins
PPI stands for Patient and Public Involvement. It means researchers working with patients, carers, and members of the public. People involved can contribute in various ways: advising on how to best recruit research participants, membership on research oversight committees, and collaborating on the dissemination of research findings. In principle, members of the public can be involved in any stage of research, as long as it is ethically appropriate.
Patients and carers can be full members of research teams; they attend meetings and contribute with a patient ‘hat’ on. They consider decisions from a patient’s perspective. Sometimes researchers work with a special patient advisory board on a study, and they will present to this board – and the patients give advice on how to move on with the study. Other times patients review funding applications or suggest research ideas. If you'd like to get involved in PenPEG and APEx's collaboration, contact the PPI team.
Patients and members of the public can see problems and solutions to problems in different ways to researchers and healthcare practitioners. By working together in teams, everyone with a stake in the research findings and contributes to making research more relevant to services and patients.
Our approach to PPI is based on a model developed within PenARC over the last five years, a model which has been acclaimed nationally and internationally for its innovative and comprehensive nature. Our model is based on the belief that patients have a right to be involved in research that is intended to benefit service users, and on the hypothesis that research which addresses patient concerns is more likely to be taken up in practice. Delivery of the model involves collaboration with patients and members of the public as both users and producers of knowledge.
Our strategic objectives are to:
We are in the process of establishing a patient and carer advisory group specifically for the work of the National School for Primary Care Research here at Exeter. More information will be posted here in advance of this.
APEx researchers collaborate with the PenARC Patient and Public Involvement Team to ensure our work with patients is meaningful and impactful, and in line with the NIHR Standards for Public Involvement. If you are particularly interested in being involved in primary care research, please email PIExeter@exeter.ac.uk and mention your primary care interest specifically.
Examples of how we work with patients include having patient-specific advisory groups for individual research studies, patient co-applicants that are part of the research team, and patient workshops to inform a particular aspect of the research.
Contact PenARC to get involved.
The PenARC PPI team has developed training materials to support learning for researchers and public members. These include workshops to help public partners reflect on their lived experiences and how to use their experiential knowledge to impact research. Other workshops bring together members of the public and researchers working together on projects to discuss barriers to joint working and aim to improve collaboration between involved patients and researchers. See some examples of APEx's PPI.
Most funders now expect researchers to work with patients and members of the public when they develop research ideas.
The key to successful involvement is to think about it early on, not at the end of developing your proposal.
Think about how much time you will have to develop relationships with people, what role they will have on the project, who will help them navigate the research system (if they are co-applicants on your application), and how you will cost their continued involvement in your bid (e.g., will there be funds to cover travel if involvement activities will happen in person).
If you need help thinking about and planning the involvement within your research, the APEx PPIE lead runs PPI advice clinics, where you can meet one on one with them and ask any questions that you have about doing PPIE within your project. The PPIE lead can advise you on things like, running a PPI workshop, developing patient and public facing materials, assembling a PPI group and PPI payments. They can advise you on developing creative patient and public engagement initiatives and signpost you to relevant literature to support you in becoming confident in your abilities to do PPIE.
We run the APEx PPIE Advice Clinics regularly, click here to book the next available slot.
When considering involvement in the research, think about who the main benefactors will be: patients with a particular condition, general members of the public who come into contact with primary care primarily through their GP surgeries, or carers of patients? Then consider how you might approach people with these experiences.
APEx has a core group of patients and carers that they work with, called the APEx PPIE Group, who have lived experience of a broad range of health conditions. If you have the beginnings of a research idea but you want to know if its relevant and important to patients and carers you can book onto an APEx Idea Café. This provides a relaxed atmosphere for you to discuss your early research idea with the APEx PPIE group. This enables the APEx PPIE group to share their valuable experiential knowledge with you to help shape your research idea so that it blossoms into a relevant and high quality project.
We run the APEx Idea Cafés regularly approximately once a month, click here to book onto the next available slot.
The University of Exeter has some groups that work with members of the public on a regular basis, which may also be helpful to you.
The National Institute for Health Research has developed a set of standards that we encourage you to work toward. If you are applying for funding from the NIHR it is important that you explain how you will work to these standards.
The NIHR has also published information on how they acknowledge the help provided by patients and members of the public in their work. You might refer to these when you cost up your application. However, some people use different rates, since it always depends on the role of the people you work with, what they would be happy with, and also the higher the rates the less involvement you will be able to cost into your bid.
Take a look at PenARC's PPI Resources for Researchers.
Interpress-IPD
Patient involvement in a meta-analysis of inter-arm blood pressure difference (INTERPRESS-IPD): what’s the point?
"There have been many occasions as the project progressed when I thought our contributions added value. From the beginning, we were welcomed and involved. Other members were patient and explained technical aspects when asked, so that we did not feel inhibited to seek guidance. A particular lasting memory I carry away from the project, is how all members joined in by challenging, discussing and debating, to reach conclusions and decisions. They were thorough to the nth degree, with some participating by phone link from other countries. Fortunately, we had a chairman (CEC) who could manage it all extremely well. I know this is how it should be, but it is very satisfying and impressive to be a part of and witness."
John, PPI Advisor
"My experience as an advisory group member has all been very positive. I have been made welcome at independent monitoring group meetings and feel that I have played an integral part in the process, even though my previous technical or medical knowledge and expertise was limited. I have always been encouraged to participate and query any technical words or phrases and seek clarification of my understanding at all times, both before and during meetings. Additionally, although my experience of the academic research process and terminology was limited at the start of this research programme, through attending pre-meetings and participating in training opportunities, this has not presented a problem. My contribution has always been welcomed and it has again proven easy to offer a lay-persons view at appropriate times throughout the research process and to feel valued and included.”
Malcolm, PPI Advisor
See our SAPC 2019 contribution or download the INTERPRESS Poster PPI
Stopp Start
Patient involvement in a screening tool of older people’s potentially inappropriate prescriptions and a screening tool to alert doctors to right treatments (STOPP START)
STOPP (Screening tool of older people’s potentially inappropriate prescriptions) and START (Screening Tool to Alert doctors to Right Treatments) are the most widely used approaches for ensuring suitable prescribing of medicine in older adults in Europe. They help support medication reviews and give a set of suggestions in terms of reducing medication burden (STOPP) and adding potentially beneficial therapy (START).
The aim of the STOPP/START project was to understand how, when and why the use of the STOPP/START tools improves medicines management in older people.
A group of 5 older people with experience of taking multiple medicines were involved throughout the project. This group were involved at specific stages of the project.
The project had a patient co-investigator and a patient and public involvement facilitator who sat in the core research team, to integrate patient perspectives and input from the wider PPI groups in discussions and decisions.
Young People's MH
Primary care recorded mental illness among children and young people in UK before and during the COVID-19 pandemic
The mental health of many children and young people has been negatively affected by the COVID-19 pandemic. The prevalence of mental health problems has increased significantly amongst young people with approximately one in six children aged 5 to 16 reporting having a mental health problem in July 2020, compared with one in nine in 2017. Anxiety, depression and disturbances in appetite and sleep are some of the most commonly reported symptoms. Despite the easing of lockdown measures, the mental health of young people continues to be affected by the challenges related to the pandemic.
Although surveys have identified an increase in poor mental health amongst young people, it is unclear how the pandemic has impacted the diagnoses of self-harm and mental health problems in children and young people made by general practitioners (GPs).
Aims:
The team will work in collaboration with the McPin Foundation – a mental health research charity which specializes in involving young people with lived experience of mental health problems in research.
We intend to work with two groups throughout the project
The PPI groups will be involved throughout the study and will help the research team:
Di-Facto
There has been a recent increase in the use of internet-based services in General practice (GP) surgeries. Including the ability to book appointments, order repeat prescriptions as well as offer alternatives to face-to-face appointments via email and video.
With a drive towards an increased provision of these services, it is important to understand any ‘barriers to use’ and how they might be overcome, particularly in order to ensure fairness in the provision of healthcare to different groups of people. One way to ensure this is with digital facilitation; supporting NHS patients and carers in their use of online services.
This project aims to understand:
So far we have worked with patient advisors in:
We will continue to work with the patient advisory group throughout the project.
Throughout the project, we will be keeping track of the input from the patient advisory so that we can evaluate and report the impact of PPI on this work and be able to share our approach with others.
Theme Lead: Emma Pitchforth
Understanding the global drivers of health and healthcare is vital. Under this interdisciplinary theme, we consider primary care in a global context, including workforce and health systems and examine the broader global challenges of which health and wellbeing are an important component. Understanding the transnational nature of health and potential policy solutions helps to place primary care in the bigger picture.
AMR Historical Foresight - Antimicrobial resistance (AMR) is a major global public health threat. There is impetus to create global governance mechanisms as part of a response to address the challenges of AMR. In this project, the team are developing an innovative approach to combine historical perspectives with future looking methodologies to understand whether lessons can be useful drawn from AMR from how tobacco control and climate change have evolved.
The International Consortium for Health Outcomes Measurement (ICHOM) Standard Set for Overall Adult Health is the result of a collective work by a group of leading physicians, measurement experts, and patient advisors under the leadership of Jose M Valderas. It represents the outcomes that matter most to adults who have Good health/No disease, Well controlled disease and Poorly controlled disease.
One Health drivers of antibacterial resistance in Thailand - This project aims to develop an understanding of the One Health drivers of AMR in rural Thailand (OH-DART).
Patient Reported Indicator Survey (PaRIS): international survey on outcomes and experiences of patients with chronic conditions.
Priority setting partnership on pelvic floor disorders in Ethiopia – Many women globally suffer with symptoms of pelvic floor problems such as urinary incontinence and pelvic organ prolapse. Members of the team are part of a priority setting partnership, being led by the University of Exeter and with the James Lind Alliance and University of Gondar, to identify research priorities form the perspectives of women and healthcare professionals in the Gondar region of Ethiopia.
WHO Basic Rehabilitation Package for supporting the integration of rehabilitation services within primary health care (PHC) and low-resource settings. The package will outline basic interventions for rehabilitation that can be safely and effectively delivered by existing workforce within these settings (including general practitioners, nurses and community health workers) through a task-sharing approach, as well as the resources required to deliver them. The package will support Ministries of Health in planning, budgeting and integrating basic rehabilitation at PHC level. The package will also inform the development of clinical protocols and training materials for existing PHC workforce. Jose M Valderas is a member of the Working Group.
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