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PenPIG (Peninsula Public Involvement Group) is PenARC's service user involvement group. They are a group of patients, service users and carers who volunteer their valuable time to make sure PenARC's research is relevant to the needs of the public
PenPIG are involved in a wide range of activities related to the running and work of PenARC. They help us to recruit new staff, are co-applicants on projects, advise on both projects and internal matters, support user involvement in on-going research projects, attend ARC Management Board meetings, present at conferences and train new medical students.
You can find out more about the PenPIGs themselves in "Meet PenPIG" below.
Participation payments are made to members of the public involved as volunteer partners in research and include an acknowledgement payment for the time spent as well as any expenses incurred.
Find our Participation Payment Policy here
PenARC also works with several other groups of patients, families, carers and the public in order to provide 'critical friends' to research teams working in childhood disability, the impact of the environment on human health and mental health.
We have also had useful (and enjoyable) 'Learning Exchanges' with two other ARCs (formerly CLAHRCs) - North West Coast in Lancaster and North Thames.
The Family Faculty brings together parents and families of disabled children (mostly within Devon) to guide and support research being carried out by PenCRU (the Peninsula Childhood Research Unit) addressing issues that are relevant to disabled children and their families, and resulting in beneficial new treatments and services.
HEPE - the Health and Environment Public Engagement group - are based in Cornwall and associated with the European Centre for Environment & Human Health in Truro, funded by The University of Exeter's College of Medicine and Health and the European Union. The Centre investigates the impact of the environment on human health and the complex links between health and environment.
Many of our PenPIGs are active in their communities and other volunteer groups around the South West, and often tell us of events they have been to and other projects they are involved in. We will bring you news of what PenPIG have been up to when we can.
Five members of PenPIG went all the way from Devon and Somerset to visit a group of public involvement advisers based at University College London (UCL). The London-based group had visited Exeter in January 2018, so this was a return visit.
Our London hosts had put together an interesting programme which showcased their collaborative work with young people. We also participated in a co-production event on how to engage citizens in big data analysis. As the day went on, public advisors were able to exchange experiences and compare how the two CLAHRCs work with patients and carers.
As well as discussing the next funding round of ARCs, the groups exchanged ideas on how impact from public involvement in research can best be captured. People said that impact to them meant ‘making a difference’ and this is the whole reason for them being involved in the CLAHRCs. People said that their involvement had to humanise research, make it more understandable and relevant to the real world. They also felt that impact related to more engagement with people who don’t use services. There is personal, national and global impact to be had from involvement of patients and carers. A general issue is that public advisors don’t see the final impact they have had on a research study, and this needs to be improved. The conversation on impact was very interesting and something we want to continue at a later stage – perhaps we attempt a virtual meeting next time?
A more detailed report on the visit is available on the CLAHRC North Thames news pages.
The National Institute of Health Research (NIHR) has been running their annual 'INVOLVE' conference for the last 21 years, and so when one of our PenPIGs had the opportunity to attend this year, we asked her to send us back a report.
Andrea starts "PenCLAHRC provided the opportunity to attend the Involve Conference in Westminster, London. The day focussed on “celebrating the progress of public involvement in research and consider the opportunities ahead”
It promised to be a very full day, structured with presentations from a diverse community of people engaged with Involvement. After the opening plenary session, to include Zoe Gray, Director, INVOLVE and Louise Wood, Director of Science, Research and Evidence, Department of Health, you knew the day was going to be jammed packed with networking, poster presentations and getting to know more about involvement."
Andrea was delighted to see posters about involving older people - including those with dementia - and you can download and read the rest of her report.
PenPIG get involved in a huge variety of healthcare research with us, including areas where involvement is often seen as 'too difficult' or 'not relevant'. In the PPI team, PenPIG and the rest of the PenCLAHRC, we believe that involving patients is relevant to everything, and (with good support and a bit of training) there is nothing that patients cannot understand and help with. As proof of this, Kate Boddy from the PPI team, and Lynn Tatnell from PenPIG were involved in some Health Economics research earlier this year and went on to write a paper with the Health Economics researchers....that has just been published! To find out about the initial research and read or download the paper, visit their page in the journal of Applied Health Economics and Health Policy
Our wonderful PenCLAHRC is one of 13 that have been established across the UK. A small team of people keep an eye on all 13 organisations, and write regular newsletters. The latest one of these focussed on Public and Patient Involvement activities, and includes news of what our PenPIGs have been up to! You can read the newsletter and subscribe to future editions at the CLAHRC Partnership website.
The CLAHRC is now over halfway through the Annual Research Question Prioritisation process, with enthusiastic invovlement by PenPIG in that process. So far we have held two workshops to discuss the 55 questions that were submitted and support PenPIG to chose those they believe most closely match the needs of local people, could help the NHS to save money or would make large improvements to peoples' lives. The process will continue next year with PenPIG being included at the final Stakeholder meeting to choose two questions to become research projects.
Two of our PenPIGs were invited to the NIHR Clinical Research Network Annual Staff meeting in Leeds to speak about how they experienced being involved in healthcare research. Lynn Tatnell and Diana Frost were asked to speak about "What could patients do for us - putting the patient at the heart of our organisation...See your work through the eyes and experiences of some of the patiens who have taken part in our studies..." so that NIHR staff could understand how their work impacted on patients.
NW Coast CLAHRC 'Learning Exchange'. Several of PenPIG were involved in a 'Learning Exchange' with our sister-CLAHRC in Lancaster, CLAHRC North West Coast.
These biographies are still in development, but you can find out more about some of our PenPIGs below:
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PenPIG member since: 2016
I became interested in Medical research after starting a HealthCare Professional course at Plymouth University. Due to my own Mental Health issues, I was unable to complete the course, yet research led me to finding Mindfulness; an alternative NHS support mechanism to manage Depression.
My main area of interest is Mental Health and all that encompasses. In addition, having experienced a variety of clinical specialities, research into long term health conditions such as Asthma, Heart Disease and Women’s health are also close to my own heart.
PenPIG member since: 2012
As a patient, I have primary progressive multiple sclerosis and am interested in guiding research in this area and many others. I am also a member of HEPE (the Health and Environment Public Engagement group for our European Centre for Environment and Human Health in Truro).
PenPIG member since: 2016
I joined PenPIG in 2016. I have spent the majority of my career in the Police being involved in Child Protection and Safeguarding Adults. I am currently the PenPIG Membership Secretary.
PenPIG member since: 2014
I have been involved since 2010 when I took part in the AAA study (Avoidable Acute Admissions) which resulted in going to the Nottingham synopsis where with others we presented a 9-minute talk of the research we did. I then joined PenPIG and have done some amazing research projects helping me with my many health issues and helping others with my experiences.
PenPIG member since: 2011
Projects involved in: NHS Dental commissioning guidelines for dentistry and paediatrics dentistry; MEdmi; Lay reviews for NIHR.
I became interested in PPI after spending 18 years in and out of various hospitals following my daughter's liver transplant and son's heart surgery. I want to improve the experience for childrens in hospital, their input in their treatment, transition to adult services, support from school and education into health for families. I am also interested in mental health, transplants, womens' health and long term health conditions.
PenPIG member since: 2010
My name is Jim Harris and I live in Penzance with my wife Cath and my son Sam. I have multiple long term medical conditions, I use crutches to get around, and take a considerable amount of medication to help me function daily. I have been involved in medical research since 2007 as a member of the Southwest Diabetes Research Network steering group. I do lay reviewing from the NIHR, worked with Diabetes UK GAP, been a co- applicant on a diabetes research trial, presented at several conferences like INVOLVE, and my latest involvement is with the KCCG Patient Reference Group and also my surgery's PPG. I am also a patient representative for SW AHSN and volunteer with the NHS England Dental Commissioning Service working on the new guides for all Dental speciality services. Participating in all these health services research groups keeps me from under my wife's feet (well that’s what she says).
PenPIG member since: 2011
I developed an interest in health research after struggling with many medically unexplained symptoms, many related to my own mental ill health.
My main health research interests are: Mental Health; Adolescent mental health; Mental health and how it impacts our physical health; Heart disease; Antibiotics use;
PenPIG member since: 2010
I am interested in a broad spectrum of medical research. With my wealth of health experience for me and my family I find that many illnesses and disabilities over-lap each other which is challenging for any medical research project. I am passionate about making health care better for others and also passionate about specialists communicating with their patients and carers on an equal level. Teamwork works wonders as I have learnt so much from different experiences - it is such a valuable source of life experience that can either cement your original opinion in stone or change your views completely! I also want to combine mental health and physical health more closely as a holistic view of our well being...
PenPIG member since: 2016
My main reason for working with PenPIG relates to my interest in a wide range of medical research and my aim of helping people to help themselves in health-related matters. I live in a rural area of Somerset and so am motivated to try to reach the people living in my community who may be isolated and lonely resulting in an impact on their general health and well-being.
I am a qualified health walk leader, a Friend of Musgrove Park Hospital (Acute Hospital – Taunton), an Ambassador for the Patients Association and the past chair of my local Patient Participation Group on which I am still actively involved as a committee member.
Having been involved in ‘Wellbeing Our Way’, (National Voices), I submitted a Peer Support blog, (relevant to my lived experience), in which I have described myself as a ‘helper, carer and facilitator’ in my local community.
My background of an M.Sc. in Local Economic Development from Glasgow University, and wide ranging business experience, enables me to take a view on the costs and impact of health-related support across the region – we can’t do everything.
My Research Interests are related to Dementia, Diabetes, Prostate Cancer and any health-related research into the effects, (on both physical and mental health), of isolation and loneliness.
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