Exeter Collaboration for Academic Primary Care (APEx)
Theme Leads: Dr Kristin Liabo, Beccy Summers.
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?
Go to INTERPRESS-IPD homepage
"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
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.
Information for:
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