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Public and Patient Involvement: News and events

Calls for Involvement I Recent PPI Events I PPI Team news

Calls for Involvement

We currently have no calls for involvement outstanding, and are operating a waiting list for membership of PenPIG! If you would like to be involved in healthcare research or clinical research, there are other organisations in the local area looking for patients and members of the public to be involved.

Exeter 10000 – Volunteers for Medical Research. 
Become one of 10,000 people in the Exeter area to participate in their research volunteer bank.  Further details:  http://exeter.crf.nihr.ac.uk/node/155  or (email): crf@exeter.ac.uk

NIHR Clinical Research Facility - Peninsula Research Bank Steering Committee
We work with lay representatives to steer our research and share decision making with our public partners.  We welcome any member of the public with an interest in healthcare to join our group. We also support the running of the Exeter 10,000 Genomes project. Further details:  https://crf.exeter.ac.uk/web/content/join-our-ppi-group or (email): crf@exeter.ac.uk

The Peninsula Cerebra Research Unit for Childhood Disability Research - PenCRU
PenCRU responds to questions from families about therapies and health services for children and young people affected by disability or who have special or additional health needs.  We involve families affected by childhood disability in all aspects of our research and related activities. Further details:  http://www.pencru.org/ or (email): pencru@exeter.ac.uk

Lived Experience Group at the Mood Disorders Centre
We are a group of people living with mental health conditions who volunteer to help increase the public understanding of mental health, and to ensure research into mental health conditions is ‘right’ for the people who have them. More information can be found here:  http://www.exeter.ac.uk/mooddisorders/groups/leg//  or (email): livedexperiencegroup@gmail.com

NIHR South West Clinical Research Network
The South West Clinical Network brings together those who use, provide and commission our health service to make improvements in outcomes for complex patient pathways using an integrated, whole system approach. Your level of involvement can range from becoming a member of a clinical network steering group or task and finish group, through to joining our mailing list to keep in touch with our progress and hear about events and opportunities for involvement: http://www.swscn.org.uk/working-us/ppi/

NIHR South West Research Design Service
The RDS exists to provide help for people preparing research proposals for submission to open, national, peer-reviewed funding competitions for applied health or social care research. The RDS essentially consists of a team of people based in universities and the NHS across the South West, able to advise and provide practical support when you are developing your grant application. One of the aims of RDS South West is to promote active and meaningful public involvement in research: http://www.rds-sw.nihr.ac.uk/public-involvement-patient.htm

People involved in Research
This is an NIHR (National Institute of Health Research - the 'research arm' of the NHS) website that contains a database of opportunities for members of the public to get involved in research. You can scroll through all the opportunities or sort your results by topic, type of involvement or location using the drop-down menus below. You can also sign up to receive an e-mail alert whenever a new opportunity is added that matches your interests. https://www.peopleinresearch.org/

Recent PPI events

4 May: PenPIG Quarterly meeting, Exeter

It's hard to believe it, but another three months have passed and PenPIG will soon be having their next Quarterly meeting to review the work that the group is involved in, hear about new opprtunities to be involved in the work of the PenCLAHRC and suggest future training they feel would be useful.

Although the group is currently at full capacity with 17 members across Cornwall, Devon and Somerset, there are plenty of opportunties to be involved in healthcare research yourself - many of which are listed in 'Calls for Involvement' above.

22 March, special session of "Making Sense of Evidence" workshop

PenCLAHRC regularly runs workshops on 'Making Sense of Evidence' to explain the basic principles of healthcare research to researchers, clinicians and those working in healthcare that are looking to undertake research in the future. Today, a special workshop was run for members of the public and patients across the region, including our own PenPIG, HealthWatch volunteers and members of a newly formed involvement group in Torbay.

20 March, Visit and seminar by Zoe Gray, Director of INVOLVE

We were delighted to be visited by Zoe Gray, Director of the national organisation leading on the involvement of patients and public in health research (INVOLVE).

March 13, South West Anaesthesia Research Matrix (SWARM) AGM and Research Training Event 2017

Set up four years ago, SWARM is a trainee-led audit and research collaboration between six NHS organisations in the region, including Plymouth Hospitals NHS Trust, Royal Devon and Exeter NHS Foundation Trust, Royal Cornwall Hospitals NHS Trust, Torbay and South Devon NHS Foundation Trust, Northern Devon Healthcare NHS Trust and Taunton and Somerset NHS Foundation Trust. It is also supported by Plymouth University Peninsula Schools of Medicine and Dentistry (PUPSMD) and PenCLAHRC.

At SWARM's recent AGM, PenPIG member Jim Harris, and Kristin Liabo and Emma Cockcroft of the PPI team gave a well-received talk on the importance and value of involving patients and the public in research. Feedback on the day suggests that all three speakers did a good job at convincing the audience that involvement was a vital part of the research jigsaw, and we look forward to supporting new researchers in their anaethesia projects in future.

March 3rd 2017, Dartington Hall - final Stakeholders' Research Question Prioritisation event

Last Friday, representatives of all of the PenCLAHRC Stakeholders (including PenPIG) attended a meeting held in Dartington Hall to review the final 10 questions submitted for the annual Research Question Prioritisation process. PenPIG have been fully involved in this long process - submitting some questions at the start; reviewing and commenting on 55 brief outlines of all of the questions submitted (during 'Round I'), reading through the comments made by other stakeholders and choosing the best 10 questions out of the 32 left in Round II, and attending a workshop for Round III where individuals 'championed' a question and then the group debated each one before selecting the 'PenPIG favourites'.

PenPIG also have Stakeholder status at the final meeting, and two of the group attended to put forward the PenPIG viewpoint and vote on behalf of the group. Another PenPIG attended as a 'shadow', building capacity to allow them to step up into the voting hotseat next year.

You can see the results of the Prioritisation process on the Prioritisation 2016 webpage, but the two questions leading the votes were:

  • Would a mindfulness approach help reduce medication in patients with chronic pain dependant on opioids?
  • Does employment support, within IAPT services, improve mental health and employment outcomes for individuals with common mental health problems who are either at work, off sick or out of work?

One of the attendees, Diana, wrote a short report of her experience of the final Stakeholder meeting:

On 3rd March myself and Andrea, with another PenPIG as an observer, attended the stakeholders Prioritisation meeting at Dartington Hall. We all introduced ourselves; there were various organisations represented,  from hospital Trusts to CCGs, the SW Ambulance Trust to Plymouth and Exeter Universities. We started the meeting with each question being introduced and a short statement made by a stakeholder to champion the question. We then discussed the pros and cons of each question being taken forward for funding, how the question might need to be altered and whether it was something CLAHRC was in a good place to take on as a research project.

 

Many gave a good account of the 10 questions, and we were told to decide on the ones we wanted to go forward for funding. We decided to stick with the PENPIGs vote (we had a workshop on Monday to discuss all 10 questions as a group and reach the 'PenPIG group decision') and voted.

 

I was impressed with the whole process, and being involved was a privilege; it also raised how PenPIG is involved in supporting the CLAHRC in decisions of this kind. We stopped for lunch before returning to hear the result of voting. Sadly PenPIG's first choice was not selected, but other questions that we liked were selected. All in all our inputs were recognised, and the other questions will be looked at again, and re-evaluated  for future funding.

February 2017 - Kristina Staley seminar, Plymouth - "Patient, Public or Lay - Purpose, not Politics"

We were very lucky to have Dr Kristina Staley give an interesting and thought-provoking lecture on the confusion around involvement and how we can improve its quality. This was followed by enthusiastic debate about the nature of involvement, who to involve and the need for different levels of experience and expertise in those we involve in research.

Dr Kristina Staley has been working in the field of involvement in health and social care research for twenty years. She is the Director of TwoCan Associates, a small consultancy specialising in developing policy and practice. She has worked with statutory and voluntary sector organisations to improve the quality of their patient and public involvement,  including NICE, the HRA, The MS Society and Parkinsons’ UK. Kristina writes a blog on PPI in research, and is currently a Visiting Fellow at PenCLAHRC.

January 2017 - PenPIG Quarterly Meeting, Taunton

PenPIG - as a 'membership' group - have four meetings a year to discuss business, policy, strategy and access training. In January 2017 we will be heading to Taunton for our first Quarterly meeting of the year

November 2016 - March 2017

PenPIG are actively involved in the PenCLAHRC Research Question Prioritisation process, reading through (and voting on) all 55 questions in Round I of the RQP and then narrowing that even further down to a 'Top Ten' in Round II of the process. The PPI team have supported PenPIG by holding workshops in November and December, and everyone is looking forward to preparing for the Final Stakeholder Meeting to be held in March 2017.

12 December 2016

PenPIG and the PPI team had a very useful (and enjoyable) training session on 'How to have Effective Meetings', run for us by Helen Sieroda of Wise Goose Coaching. We discussed what makes for a good meeting, what behaviours and actions make meetings go 'off the rails' and how each person at a meeting needs to be committed to making that meeting work well. PenPIG and the PPI team are now in the process of drawing up a list of 'Acceptable Meeting Ettiquette' for all of our future meetings! We finished an excellent training session with mince pies, ahead of Christmas.

09 November 2016

Three PenPIGs attended the PenCLAHRC Management Board meeting; the draft MInutes of that meeting are available on request now. PenPIG are a very important part of the Governance and oversight of the CLAHRC, and have a regular 'reporting slot' on the Agenda of the Management Board meeting to report on their activities, how PenPIG are working with other local organisations and how 'patient and public involvement' is happening across all of the CLAHRC projects.

14 October 2016

The PPI team were delighted to host a seminar on October 14th, open to all. We welcomed Dr Rosamund Snow – a renowned editor of BMJ and herself an Involvement Researcher – to talk on “Why healthcare research isn’t working, and some ways to make it better”. You can find out more here

13-14 October 2016

A mixed group of PPI team and PenPIG recently travelled all the way to Lancaster to take part in a 'Learning Exchange' with our sister-CLAHRC - the North West Coast CLAHRC. The two CLAHRCs have been exchanging visits, teleconferences and resources for a year now, and we hope to bring you a report about what we have both learnt soon.

29 September 2016

We delivered a bespoke course on qualitative analysis for PenPIG and two other public groups working with PenCLAHRC. Over 20 members of the public spent an afternoon in Paignton Library learning how to draw up an analytical framework to assess interview transcript data, greatly assisting the researchers with their ongoing project. This group will become the nexus of a local network around involvement in care.

 

PPI Team news

EUPATI Fellow finally graduates!

For the last 14 months, one of our team has been spending her free time studying to be a Patient Expert in medicines research and development with the EUPATI project (EU Patient Academy in Therapeutic Innovations). Along with nearly 100 other students from all 28 EU countries, Helen graduated last month in Brussels at a spectacular ceremony to become a EUPATI Fellow. Find out more about the EUPATI project and how you can access a Toolbox full of insight into the medicines research and development process or join the UK chapter of EUPATI if you are interested in finding out more.

Vistors from Norway

We recently welcomed two researchers visiting us from Tromso in Norway. They attended a teaching session led by PenPIG member Nigel Reed and Kristin Liabo which focused on including patients in teaching evidence-based medicine. Maria Bakland and Gunn Pettersen also met the PPI team for lunch and continued their discussions about how best to involve patients in research.

Fundraising Frenzy!

We are going fund-raising crazy over the next six weeks! Two excellent causes are being supported by PPI team members during October and November:

Cerebra is a great charity, dedicated to helping families with children with brain conditions discover a better life together. They are also a major stakeholder in the PenCLAHRC, and an organisation that funds important involvement-based research here, with links to PenCRU and the Family Faculty. To help the team get their fund-raising off the ground for Cerebra Head Awareness Week, we put on our best head-gear for a photo.

At the recent PenPIG Quarterly meeting, the group also got together to support this great cause. And you can support them too by following this link: Cerebra Head Awareness Week, 24 - 28 October 2016 or following them on #CerebraHeadAware.

As well as dressing up, our own Kristin Liabo took part in the Great West Run on Sunday 16 October. She managed a great time and raised a fantastic £848.00 for Cerebra!

And Helen Burchmore proudly sported a moustache throughout November (all day, every day...) in aid of Prostate Cancer UK, mens' mental health and the "Movember" movement: http://prostatecanceruk.org/about-us/movember, eventually raising £450.00

 

 

Upcoming Events

May
03

PPI Advice Clinic

Plymouth, ITTC Building (PL6 8BX)

Whatever your query, from finding out more about Patient and Public Involvement to creating a PPI...
More information

May
09

Searching and Review Clinic

The University of Exeter, St Luke's campus, South Cloisters (Room 2.35)

These clinics have been set up to help the PenCLAHRC Evidence Synthesis Team to manage and respond...
More information

Calendar

News

Dr Nick Axford appointed as Associate Professor

21 April 2017

Dr Nick Axford joins PenCLAHRC this week as Associate Professor in Health Services and will...
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Want to stay mentally healthy in older age? Stimulate your brain in early life

20 April 2017

Stimulating the brain by taking on leadership roles at work or staying on in education...
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Job Opportunity - Trial Manager

10 April 2017

The University of Exeter Medical School is seeking a Trial Manager to take a lead...
Read more

News

Research Projects

Comprehensive Mouth Care and Post-operative Pneumonia (CUPPA)

Theme: Evidence for Policy and Practice

A pilot study to see if comprehensive mouth-care reduces the incidence of post-operative pneumonia in...
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Changing Agendas on Sleep, Treatment and Learning in Epilepsy - A long term condition of children (CASTLE)

Theme: Evidence for Policy and Practice

PenCRU and the Evidence Synthesis Team are working with families, charities and health professionals specialising...
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Research Projects