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Exeter Collaboration for Academic Primary Care (APEx)

Research themes

Primary Care Focused HSR

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.

Current Projects

  • RETAIN: Recruitment and retention of staff in rural dispensing practice – The rural dispensing practice – does it achieve better medication adherence and clinical outcomes compared to non-dispensing practices? A cross-sectional analysis of routine data
  • STOPP START – Understanding the use of the tools 'Screening Tool of Older Persons’ Prescriptions (STOPP)', and 'Screening Tool to Alert to Right Treatment (START)' to reduce complications of medications, need for GP appointments, the time people spend in hospital and medication costs
  • VOLITION – Development and feasibility testing of an intervention (VOLITION): To support older patients with multiple health problems in joint decision-making about their healthcare with a GP.

Past Projects

  • COCOA – Care for Offenders: Continuity of Access
  • DAQOL AGE – the Devon Ageing and Quality of Life Study
  • ERS – The effectiveness and cost-effectiveness of exercise referral schemes: a systematic review and economic evaluation
  • ESTEEM – an NIHR-funded cluster trial of triage for patients seeking same-day appointments in primary care
  • GETuP study – The effect of targeted exercise on falls and function for people with Parkinson's disease – Systematic review
  • MESH – Managing Illness by Empowerment of Self-Care and Harmonisation of Patient-Practitioner Agendas Asthma Self-Care Pilot Study – on ORE
  • ReGROUP – NIHR-funded (Health Services & Delivery Research) project which aims to inform and support the NHS in addressing current GP workforce issues in the UK
  • Pain Clinic Practitioners' Beliefs About the Causality of, and Expectations for Treatment of Chronic Musculoskeletal Pain
  • Sickness Absence Project – early interventions for reducing the length of sickness absence
  • Special Messages in Primary Care – Development of a special message system to improve informational continuity in the out-of-hours care of patients with palliative care needs.

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).

Patient Reported Indicator Survey (PaRIS) Projects

  • International survey on outcomes and experiences of patients with chronic conditions. (OECD), €3,036,097, 15/01/2019-14/10/2023. Prof Jose Valderas
  • Development work in Norway as basis for an application to Horizon Europe on comparative health system analysis and research. Norwegian Institute for Public Health, £146,419, 01/06/2020-30/05/2021. Prof Jose Valderas

Patient-Reported Outcome Scores (PROMs) Projects

  • Time-dependent variation of patient-reported outcome scores in patients with chronic health conditions. University of Exeter, £50,000, 36 months, Prof Jose Valderas

Past Projects

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. 

Current Projects

Asthma
Blood Pressure
  • ABLE-BP: The relationship between arm and leg blood pressure measurement (further an individual patient data meta-analysis using data from the INTERPRESS collaboration)
  • Clinical relevance of double-arm blood pressure measurement; prevalence of clinically important inter-arm blood pressure differences and associated patient characteristics, based on a cohort of 72,669 Indian primary care subjects using standardized automated simultaneous blood pressure measurement. 
  • Cochrane reviews
    • Allied health professional-led interventions for improving control of blood pressure in patients with hypertension
    • Home-based vs centre-based cardiac rehabilitation update
    • Involving older people with multimorbidity in decision-making about their primary healthcare: A Cochrane systematic review of intervention
  • DROP: Detecting Risk Of Postural Hypotension
    • Detecting and managing postural hypotension in primary care: preparatory work for a trial of targeted medication de-escalation 
  • EuroPAD
    • Diagnosis of peripheral arterial disease in primary care; a survey of general practitioners in England
  • Exploring the aetiology of clinic blood pressure changes during a single clinic visit: A cross-sectional study
  • REACH-HF: Rehabilitation Enablement in Chronic Heart Failure
    • Protocol for evaluation of the implementation of a home-based cardiac rehabilitation programme for patients with heart failure
    • Improving access to cardiac rehabilitation for people with heart failure: Implementation of a home-based service in the NHS 
    • Developing and evaluating a network of practice for the implementation of home-based heart failure rehabilitation across the UK
    • Improving the provision and access of cardiac rehabilitation services. REF Impact Case Study, University of Exeter
Older Patients
  • VOLITION: Development of an intervention (VOLITION): To support older patients with multiple health problems in joint decision-making about their healthcare with a GP
Women
Cross-cutting with new modes of consulting and primary care:
  • Digital self-help focussed interventions for depression or anxiety in people with heart disease: systematic review and meta-analysis
  • D REACH-HF: Digital Rehabilitation Enablement in Chronic Heart Failure
  • Group-based interventions to improve control of blood pressure in hypertension: systematic review and meta-analysis
  • imPulse: Sensitivity and Specificity of a mobile lead-one ECG-like device for the detection of Atrial Fibrillation (AF) 

Past Projects

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.

Current Projects

  • Di-Facto - Facilitating access to online NHS primary care services - current experience and future potential
  • TOGETHER 2 study: Evaluating video and hybrid group consultations in general practice: mixed-methods, participatory study

Past Projects

  • Devon webGP pilot evaluation
  • Alt-Con - The potential of alternatives to face-to-face consultation in general practice, and the impact on different patient groups
  • ViCo - Chief Scientists' Office (Scotland) funded research examining the potential for video-consulting in primary care
  • PRP - Current and potential impact of online consultations in general practice on socio-economic inequalities

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.

Current Projects

  • BRACE - BCG vaccination to reduce the impact of COVID-19 in healthcare workers 
  • PRINCIPLE - Platform randomised trial of treatments in the community for epidemic and pandemic illnesses

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Ageing, Frailty, and Multimorbidity

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.

  • Several NIHR feasibility studies for randomised controlled trials of novel interventions for commonly encountered conditions in primary care. 
  • NIHR ARC National Priorities – Ageing, Dementia and Frailty, NIHR Applied Research Collaboration (ARC) National Priorities, 26808, £1,875,000, 01 October 2020 – 30 September 2023. CI Prof Helen Roberts, co-applicant SE Lamb.
  • PROCURE - Partial Rotator Cuff Tear Repair Trial, NIHR HTA, NIHR128043, £1,483,587.80, 01/01/2020 – 28/02/2029, CI SE Lamb.
  • Research for Patient Benefit (RfPB) Programme: NIHR201031 – Anti-TNF (Adalimumab) injection for the treatment of adults with frozen shoulder during the pain-predominant phase: a multi-centre, randomised, double-blind, parallel-group, feasibility study. 01 March 2021 – 31 March 2023. £249,991.00. CI J Nanchahal, Co-applicant SE Lamb.
  • BOOST: Better Outcomes for Older People with Spinal Trouble
  • Getting it Right for Shoulder Pain
  • Oxford Pain and Lifestyle Survey (NIHR programme grant)

2021

  • HIP HELPER - Improving patient recovery following hip fracture through caregiver support: a feasibility study. NIHR200731 01Sept2020 – 01 Sept 2021. £249,987.00 CI T Smith, Co-applicant SE Lamb.
  • PEP-TALK: A behaviour change physiotherapy intervention to increase physical activity following hip and knee replacement: a pragmatic randomised controlled trial. NIHR Research for Patient Benefit – Competition 32 (Ref: PB-PG-1216-20008). £350,000. 01/08/2018 - 31/07/2021 CI Toby Smith Co-Investigator Sarah Lamb. 

2019

  • Risk-benefit and costs of uncompartmental (compared to total) knee replacement for patients with multiple co-morbidities: a non-randomised study, and different novel approaches to minimise confounding. £268,076. NIHR HTA (Ref: 15/80/40) (01/06/2017-30/11/2019) Prieto-Alhambra-D (University of Oxford)
  • CORKA Community based rehabilitation after knee Arthroplasty (CORKER) C.I. Karen Barker, University of Oxford. NIHR HTA 01/04/13 01/08/2014 - 31/12/2019 £1,482,960 (University of Oxford)
  • PreFIT – Prevention of Fall Related Injury Trial: NIHR HTA. (Ref: ISRCTN 71002650 8/14/41) £2.9 million. 06/2010 – 02/2019. CI Lamb S. (University of Warwick/Oxford)

2018

  • PROVE Physiotherapy Rehabilitation for Osteoporotic Vertebral fracture trial (PROVE) NIHR HTA (Ref: 10/99/01) 01/01/2013 - 31/03/2018 £1,272,201 CI Barker K (University of Oxford)

2017

  • PDSAFE – A randomised controlled trial of the effectiveness of PDSAFE to prevent falls among people with Parkinson's Disease NIHR HTA (Ref:10/57/21) 01/03/2013 - 31/08/2017 £2,777,037 CI Ashburn A (University of Southampton)

2015

  • DAPA – Physical activity programmes for community-dwelling people with mild to moderate dementia. NIHR HTA (Ref: 09/80/04) 04/2011 – 09/2015. £1.78 CI Lamb S. (University of Warwick/Oxford)

2013

  • SARAH – Exercises for arthritis of the hands. NIHR HTA (Ref: 07/32/05) £976,955.70 CI Lamb S (University of Warwick) 11/ 2008 - 05/2013

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).

  • Developing tools for preventing delirium in primary care. RfPB 1/4/2017 (24 months) £235.000. Role: Co-App PI Prof David Melzer, RD&E NHS Foundation Trust, Exeter, UK
  • Longitudinal analysis of multimorbidity and polypharmacy patterns in individuals aged 65 or older: electronic health care record based cohort study. Fondo de Investigaciones Santiarias, Instituto de Salud Carlos III. 1/9/2016 (36 months). PI Dr Concepcion Violan, Jordi Gol IDIAP, Spain
  • Meta-synthesis of patients and health professionals' perceptions of multimorbidity in General Practice. University of Exeter (partly funded through Improving the management of long-term conditions with the clinical use of patient-reported outcome measures in Primary Care, National Institute for Health Research CSA). PI Prof. Jose M Valderas
  • Modelling the impact of co-morbidity in the diagnosis of cancer in general practice. Co-PI Prof Jose M Valderas and Prof Willie Hamilton, University of Exeter
  • Development of a conceptual model for the study of co-morbid conditions: an example with hypertension and osteoarthritis. University of Exeter. PI Prof. Jose M Valderas
  • Determinants and impact of incident multimorbidity in the English Longitudinal Study of Ageing. University of Exeter. PI Prof. Jose M Valderas
  • Risk-benefit and costs of unicompartmental (compared to total) knee replacement for patients with multiple co-morbidities: a non-randomised study and different novel approach to minimise confounding. NIHR HTA. 1/2/2017 (24 months) PI Dr Daniel Prieto-Alhambra, University of Oxford, UK
  • Comorbidity as a predictor of referral to, and outcome from, surgery in primary care patients with newly diagnosed osteoarthritis in the hip: Effectiveness of the multi-PAP intervention in young-old patients with multimorbidity and polypharmacy aimed at improving physician drug prescription in primary care: cluster RCT. Fondo de Investigaciones Sanitarias, Instituto de Salud Carlos III. 1/9/2015 (36 months). PI Dr Isabel Del Cura Gonzalez, Servicio Madrileño de la Salud, Spain
  • Person-Centred Coordinated Care. National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South West Peninsula. PI: Prof Richard Byng 1/1/2014-31/12/2019 
  • Innovating care for people with multiple chronic conditions in Europe. The ICARE4EU project. European Commission 7 Framework Programme. 2013-2016. PI François Schellevis, NIVEL, Netherlands
  • Improving the management of long-term conditions with the clinical use of patient-reported outcome measures in Primary Care, National Institute for Health Research PI Prof. Jose M Valderas 1/3/2011-29/2/2016
  • Agent-Based Simulation as a tool to support polypharmacy prescribing practice in multimorbidity. National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South West Peninsula. PI Dr Daniel Chalk. 9/3/2015-31/1/2016
  • Quality and Outcomes of Care for Chronic Conditions in Older Patients Diagnosed with Breast, Colorectal, or Prostate Cancer Compared to Non-Cancer Controls:  An Observational Study Using the Clinical Practice Research Datalink (CPRD). Cancer Research UK. Co-PI Prof. Jose M Valderas 1/7/2013-31/12/2015

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Early Cancer Diagnosis

Theme Leads: Professor Willie HamiltonProfessor Richard NealAssociate Professor Gary Abel

We are internationally renowned for our research on the epidemiology of diagnosis and the diagnostic process for cancer, including:

  1. Identification of individuals at high risk of cancer
  2. Optimum testing strategies in primary care
  3. Implementation of this into the NHS and internationally

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.  

  1. We have examined the public appetite for cancer testing even when the likelihood of cancer is low – which strongly influenced provision of NHS cancer diagnostics.
  2. We have examined the key features of ovarian cancer in women presenting to their doctor…
  3. and a similar study in childhood cancer.
  4. We have studied whether seeing the same GP preferentially has an effect on the speed that cancer is identified.
  5. We have modelled whether cervical smears could be used as a diagnostic test in women with gynaecological symptoms, in addition to its standard use in screening.
  6. We have also led the field in studying the link between a raised platelet count and a future cancer diagnosis.  

For more information on the team's cancer diagnosis work, see the DISCO programme.

CanTest Research Group / Discovery (DISCO) Team

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

Policy Research Unit

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.

SPOCC: Spotting Cancer Among Co-Morbidities

Visit the Ageing, Frailty, and Multimorbidity section for more information.

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Primary Care Mental Health

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:

  1. Researchers within the APEx collaboration have researched treatment-resistant depression for patients with a diagnosis of major depressive disorder who remain clinically depressed after two or more different evidence-based treatments.
  2. The CADENCE project conducted a pilot trial of enhanced psychological care for people undergoing cardiac rehabilitation treatment who are depressed after an acute cardiac event

Research Groups

  • Health Services and Policy Research

Our Impact

A best practice guide for health and social care professionals

 

Psychological Medicine

  • CCUK: How depression leads to relapse in people with UC 
  • HOME: How can we best address prolonged acute hospital stays in older inpatients with medical-psychiatric multimorbidity? 
  • SCENE: Improving the quality of life and health outcomes of patients with psychosis through a new structured intervention for expanding social networks

Dementia / Care Homes

Visit the REACH (Research in Ageing and Cognitive Health) website for a breakdown of research projects.

Suicide and Self Harm

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)

Mental health past projects (some cross-cutting with vulnerable groups theme from primary care health service research theme)

  • Older people
  • Young people
  • Vulnerable people
  • People with long term health conditions
  • Psychological intervention evaluations
  • Fellowships

Topic

Project

Details

Output

 Fellowship

 

 

ADepT fellowship - Barney Dunn

 

 

(NIHR Career development fellowship 14-19)  

Psychological intervention evaluation

RfPB THRIVE trial bipolar 

(17-19: PI Barney Dunn)  

Older people

Psychological intervention evaluation

Improving mental health and reducing antipsychotic use in people with dementia in care homes: the WHELD research programme including two RCTs

NIHR programme grant for applied research, £2,106,391.00, PI: C Ballard, April 2010 - July 2020

Antipsychotic Best Practice

Antipsychotics Best Practice Guide Appendix

 

Psychological intervention evaluation

 

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

Psychological Intervention evaluation

 

Mechanisms of Action of Group Interventions (MAGI) study.

NIHR/MRC EME, £158,360, PI: Jane Smith, Jan 2016 - Aug 2017  

Young people

People with long term health conditions

Improving the mental health of children and young people with long term conditions

   
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

 

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    

Older people

 

Reducing urgent hospital admissions for residents of care homes    

Older people

 

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)  

 

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Public Patient Involvement

Theme Leads: Dr Kristin Liabo, Beccy Summers, Georgie Jenkins

What is PPI?

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.

What do PPI members do?

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.

Why is PPI important?

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.

How does APEx approach PPI?

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:

  • Embed public involvement in all research activities
  • Develop practical involvement approaches in partnership with patients and carers
  • Build on the collective experiences of the Peninsula Public Involvement Group (PenPEG)
  • Further the evidence-base for public involvement in research
  • Support sustainable public involvement and engagement at the University of Exeter College of Medicine and Health

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.

What approach does APEx take to PPI?

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.

How do I involve the public in my research?

Most funders now expect researchers to work with patients and members of the public when they develop research ideas.

Planning during the proposal stage

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, 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.

Approaching interested parties

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. The University of Exeter has some groups that work with members of the public on a regular basis.

Before you approach people to ask if they would like to work with you, consider what role you can offer them in your research.

Is your idea fully formed and you would like help with plain English descriptions of the research you plan to do? Or, do you have an inkling of an idea and would like people to help you shape this further?

Do you have funds to cover people's travel to come and see you at the university, will you be able to meet them where they live or where they usually gather (if you are linking in with a community group)?

What does the NIHR recommend?

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.

PPI – Examples of Working Together

Interpress-IPD

Patient involvement in a meta-analysis of inter-arm blood pressure difference (INTERPRESS-IPD): what’s the point?

Go to INTERPRESS-IPD homepage

Project Context

  • Cardiovascular disease is the leading global cause of death. Since most events occur in those at low to medium cardiovascular risk, recognition of novel risk markers, to refine risk prediction and to stratify treatment priorities, is important.
  • A difference in blood pressure between arms is one such risk marker. We have formed the INTERPRESS Collaboration to study this: we have combined data from 24 cohorts across Europe, the USA, Africa and Southeast Asia, totalling over 57,000 patient records.

PPI Advisor Input

  • 3 PPI advisors - Malcolm, Nigel, and John - contributed to all meetings and were involved in correspondence. Kate Boddy and Kristin Liabo were PPI facilitators: co-applicants to co-ordinate PPI involvement.
  • Pre-meetings prepared advisors for the full research meetings by reviewing and discussing relevant documents. These meetings were highly valued.

PPI Impact

  • Co-produced a plain language summary of the project to be included in the protocol document and project website.
  • Revised collaborator invitation letters to emphasise data anonymisation and signposting to the protocol on PROSPERO.
  • Suggested changes to the appraisal tool (QUIPS), subsequently endorsed by the project team. This was a significant impact for the project ensuring that the appraisal tool was fit for the purposes of the study.
  • Ensured that a patient/end-user perspective is at the forefront of researchers’ minds whilst conducting the research.

"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)

Project Context

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.

PPI Advisor Input

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.

PPI Impact

  • Input into theories about STOPP/START and helped to prioritise which theories to review in more detail.
  • Discussion and interpretation of initial findings. Influence the terminology used in the project opting for personalisation over individualisation. The group also helped to define what was meant by personalisation for the perspective of using STOPP/START.
  • Co-produced plain language summary of the project.
  • Advised about who to share findings with and how.

Young People's MH

Primary care recorded mental illness among children and young people in UK before and during the COVID-19 pandemic

Project Context

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:

  • Look at how many children and young people in the UK have been diagnosed with a psychiatric disorder or have self-harm recorded in their GP records, comparing the periods before and during the Covid-19 pandemic.
  • Work with children and young people, parents and other key partners to develop recommendations for GPs, other healthcare services, social services, schools and colleges, on how to help children and young people with their mental health difficulties.

PPI Advisor Input

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

  1. A children and young people’s group consisting of approximately 20 young people with mental health difficulties
  2. A parent/ carer group of approximately 10 people with experience of supporting a young person with mental health problems.

PPI Impact

The PPI groups will be involved throughout the study and will help the research team:

  • Interpret the study’s findings
  • Identify areas for further analyses
  • Consider the impact of the findings for healthcare and social care services, schools and universities, primary care services, children and young people and parents/carers
  • Co-develop recommendations that are relevant and have the ability to be applied effectively
  • Develop creative methods to share the study findings

Di-Facto

Project Context

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:

  • How the use of internet-based services are advertised and supported in GP surgeries
  • The benefits and challenges of different approaches used to support internet-based services for patients and staff.

PPI Advisor Input

  • 3 PPI advisors contributed to development of this project along with PPI facilitator Emma Cockcroft. Emma and Chris Marriot (Patient co-investigator) are part of the core project team.
  • A group of 7 patients (including Chris) are part of a wider patient advisory group. This group has met on a number of occasions so far and will continue to meet throughout the project.  

PPI Impact

So far we have worked with patient advisors in:

  • Refining research questions for the systematic review
  • Reflecting and interpreting findings from the review
  • Development of surveys for GP practices and patients
  • Refining methods for the qualitative research
  • Developing patient-facing documents

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.

Read more about the Di-Facto project

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Global Health and Broader Context

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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