“No two YPAG meetings are the same”

Six times a year, 10 to 18-year-olds from the Bristol region meet as the Young Person’s Advisory Group (YPAG) to evaluate the way research about them takes place. For our researchers, it’s a chance to have their research ideas, information sheets or questionnaires checked by the people who they are planning to research.

Shivani, 16, blogs about what she gets out of being a member of YPAG (other than pizza):

When I joined the Young Person’s Advisory Group (YPAG) I had few expectations, but I have been pleasantly surprised by the diverse – and often hilarious – meetings. Initially, I was astonished at the eagerness to be involved that all the young people expressed. I am 16, and very passionate and opinionated, and equal enthusiasm from children much younger than me was amazing to witness.

I’ve been attending YPAG for only a short time, but I’ve have experienced such a variety in the sessions so far.

The group met on 23 December to review a document from Bristol Medical School researcher Phillipa Clery, followed by a session from Jo Welsman from the Research Design Service. This all went smoothly. We threw around insightful and original ideas, much to the delight of the researcher whose project we were discussing. She ended by thanking us for our helpful contributions.

Before the discussion, we had all been given the opportunity to participate in some filming, for a short video. I am not the most confident in front of a camera, but I do love to chat, so was happy to answer a few questions on film. The filming was quite humorous, thanks to the office motion sensor lights that enjoyed switching off in the middle of the interviews! Despite that mild upset, all went smoothly, and everyone appeared relaxed and confident on camera. The wonderfully smiley cameraman also filmed some shots during the discussions in the main room.

As the clock hand crawled towards 12pm, our stomachs started to be more vocal. I glanced to my left and caught eyes with the person next to me. Stifled giggles escaped us: we had both heard my stomach rumbling rather loudly. We had all pre-ordered what we wanted for lunch from the café downstairs; our usual routine. So, as lunch time approached, Mike went down to collect the food. Unfortunately, the café was closed, despite it having been very definite about being open when asked before the day.

We brainstormed various solutions to the very serious problem: “Walk to another café nearby?”; “Bang on the door and demand to be served downstairs?”; “Just eat all the biscuits and chocolate bars instead?”. Then the lightbulb moment: “Shall we just order pizza…?”. This was met with much admiration. So, the pizza was ordered, and we all buzzed with this new revelation. At the end of the session, we took a vote, and an almost unanimous decision was made to make pizza the regular thing.

While we waited for the precious delivery, a game was proposed to distract us. Charades on an empty stomach is somehow much more hilarious than when fully fuelled. We laughed a lot that session.

Our YPAG meeting on 3 January focussed on one topic. Two people talked to us about the upcoming festival Good Grief, a city-wide event on talking about and overcoming grief. With it being a sensitive topic, the researchers were accompanied by two members of the charity Winston’s Wish, which aims to help support young people (and their friends and family) experiencing grief.

The session was very productive; the young people brought such a multitude of ideas, constructive criticism and insight into the discussion. The researchers were very grateful, and said they felt they got a lot out of it. Many of the young people were so open and shared some of their own experiences. It felt very powerful that they felt comfortable talking so openly in the space. It speaks volumes for the people that attend YPAG, and those who organise it, for making it such a safe space.

The contrast between these two experiences is fantastic. It shows clearly that no two YPAG meetings are the same, and it’s not all about evaluating and reviewing.

If you are between the ages of 10 and 18 and think you might be interested in joining the group, contact Mike Bell on mike.bell@bristol.ac.uk. No experience is needed (except experience of being a young person), you get paid and it’s a great opportunity to make new friends – like Shivani – and influence research.


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Have you had breast reconstruction after mastectomy?

Closing date: Sunday 1 December

For: People who have had breast reconstruction after mastectomy.

What: The BRighteR Study at The University of Bristol is looking for people with experience of breast reconstruction after mastectomy to join a patient group.

They would like to establish a local patient group to help them understand how people feel being contacted following their breast cancer treatment and how this can be done in a sensitive way that encourages people to take part in the study. Your feedback will help to design the research project which is exploring long term outcomes of different types of reconstructive surgery.

When: The project leaders will meet in late November and further details will be available shortly afterwards.

Payment: The University can pay travel expenses to attend meetings.

For more information: If you are interested in joining the patient group or would like to know more, please contact brighter-study@bristol.ac.uk

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Help update UWE’s radiography training

Closing date: Midnight on 28 October 2019.

For: Anyone living in Bristol can contribute- you do not need to have had an x-ray and / or imaging. Also anyone from outside Bristol who has had imaging in Bristol can take part.

What and when: The University of the West of England (UWE) has been training radiographers for over twenty years and would like your help in updating their training course. They are using an online tool to create an opportunity for people to have their voices heard. Help shape their future by:

  •  sharing your insights;
  •  commenting on ideas;
  •  rating other people’s views.

All ideas are anonymous. If you have helped with this previously, please note that this is a new updated workshop with different tasks to work through.

For more information: Visit https://crowdcurriculum.clevertogether.com

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Help develop innovative approaches to heart failure

Closing date:Wednesday 6 November 2019

For: This is an exciting new opportunity for anyone affected by heart failure (either themselves or as a carer or family member).

What: The British Heart Foundation are a medial research funding charity. They are looking to take research to the next stage and have developed a new funding grant that will help organisations develop innovative approaches that address an unmet clinical need to ultimately benefit people affected by heart failure. To ensure the applications they fund are important and relevant to patients, they are looking for representatives to review and assess the funding applications from their unique patient and carer perspective.

They are currently looking for one (additional) lay member to be part of the Funding Committee to ensure the patient and carer voice is incorporated into the final funding decisions. They are also looking for people affected by heart failure to be part of their Wider Reference Group who will support the two lay members in their role by sharing their insights and ensuring they are able to represent the wider heart failure population.

When and where: Both of these roles will need to be able to review and access funding applications online over December 2019 – January 2020 and that will likely take a few hours. For the lay member role only, they will additionally need to attend a Committee meeting in London on 28 January 2020 that will take the majority of the day.

Payment: All travel expenses will be covered (they can book these in advance for you) and refreshments and lunch will be provided

For more information: Visit the British Heart Foundation website or get in touch with Sinduja Manohar at heartvoices@bhf.org.uk or 0207 554 0426.

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Have you experienced trauma? We need your help.

Closing date: Friday 1 November

For: People who have experienced trauma. You don’t need to have any expertise of research, just a willingness to share your views within a group of 10-12 people.  You won’t be asked to discuss your own experience of trauma.

What: A team of researchers at the University of Bristol are looking for people who have experienced trauma to help advise them with their study. This might be violence, abuse, neglect, loss, disaster, war or any other emotionally harmful experiences. The study is a review of literature about what approaches to healthcare are safe and acceptable for people with lived experiences of trauma.

When: There will be an initial meeting in central Bristol to ask for your opinion on some aspects of the study. The meeting will last no longer than two hours. There may be further future meetings and you may occasionally be asked to review things like plain English summary of the study findings.

Payment: Attendees will be paid £21.57 per hour and reasonable travel expenses will be reimbursed.

For more information: If you are interested in helping, please email trauma-informed-study@bristol.ac.uk before 1 November.

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Are you a Bristol-based patient or carer with an interest in palliative or end of life care?

Closing date: Monday 11 November

Do you have a life-limiting illness?

Are you a current or past carer for someone who has received palliative or end of life care?

Do you have a connection to, or interest in, palliative and end of life care?

For: Any Bristol-based patients or carers with an interest in palliative or end of life care.

What: The University of Bristol Palliative and End of Life Care Research Group is running a workshop on patient and public involvement in palliative and end of life care research. During the workshop they will explore how members of the public can influence and steer research and you will have the opportunity to contribute to current research projects.

When: The workshop will take place on Wednesday 13 November 10:00-16:00 at the Vassal Centre in Fishponds.

Payment: Attendees will be paid £40 to attend and local travel expenses will be reimbursed.

For more information: To find out more please email peolc-researchsw@bristol.ac.uk or call 0117 331 4599.

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What does good public involvement look like? A public perspective

Cathy Rice has been involved with People in Health West of England (PHWE) since the very beginning in various roles including as co-chair of the operational group, editor of newsflash, our fortnightly newsletter, and co-facilitator of our enhancing facilitation skills workshop.

She has also been a public contributor on several research projects and clinical trials over the years both locally and nationally.

We had a chat with her to see what we could learn from her experience.


What made you want to get involved with health research in the first place?

I thought it sounded like a worthwhile idea. I hadn’t worked for two years following a stroke and it was a way for me to dip my toe back into the water of the working world.

The first project I was involved in was based at the University of the West of England and was to do with GP training. I explained that I was no longer energetic, but the researcher said all I had to do was be a member of the public- someone who was not from an academic or health background. Although many people get involved in health research related to their own personal health situation, for me it was more like an escape from my situation. After the first meeting, I remember noticing that it was the longest I had gone without thinking I’d had a stroke.

What have you enjoyed most about being a public contributor over the years?

I have loved seeing how things change as a result of my contributions.

On Newsflash, sometimes the key information for an involvement opportunity is hidden away among pages of academic writing. I enjoy extracting the essentials, and making the entry accessible to everyone.

I feel I have a much clearer understanding of how research works. It’s amazing how many years academic research sometimes takes.

What has your experience taught you about what good public involvement looks like?

  • A good contact person is key. It has really helped me feel valued when I have had a trusting relationship with the research staff.
  • Be clear about the role. As with any commitment, people want to know what they will be doing, what is expected of them and what they can expect. This includes being clear about payment; is there any payment, how much and for what, will expenses be covered?
  • Keep us informed, even if that is only an email every few months to say that nothing much is happening. Of course, if there are results to share, let us know. We love seeing the benefits of our involvement.
  • Take what we say seriously. That doesn’t mean we have the final say as naturally everyone has different opinions but listen and ensure our involvement is meaningful.
  • Celebrate difference. Everyone has different personal and professional experience they will bring to the role which means involvement will vary. That’s ok, people are different, and all lived experience is valuable.
  • Facilitate meetings well. Academics have a responsibility to everyone in the room to ensure that all voices are heard. Co-facilitating meetings with a member of the public can help this and they can also keep an ear out for any jargon.
  • Be thoughtful. Think about what the experience of taking part will be like for a member of the public. On one project I was involved in I had to travel quite far to attend a meeting and, after having a stroke, the long train journey to a new place was a big deal for me. The contact person met me from the train station and accompanied me to the venue, which meant a lot to me and helped encourage my further involvement.

Cathy is passing on the baton of newsflash editor so we wanted to take this opportunity to say thank you so much for all your hard work from all of us here at People in Health West of England.

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Are you interested in emergency care and how it is delivered in Bristol, North Somerset and South Gloucestershire?

Closing date: Friday 27 September

For: Anyone interested in how emergency care is delivered in in Bristol, North Somerset or South Gloucestershire. If you have had recent experience of emergency care services in the region that would be great but is not essential. You only need an interest in emergency care.

What: A group of researchers and health professionals based in Bristol are looking for members of the public to help them identify the major problems in emergency care (Accident and Emergency Departments, Urgent Care Treatment Centres, Ambulance call-out) that need to be tackled.

When: A two hour meeting will take place in the seminar room, CLAHRC West, 9th Floor, Whitefriars, Lewins Mead, Bristol, BS1 2NT, either on Tuesday 1 October or Thursday 10 October 11 am -1.00 pm.

Payment: A cold buffet will be provided at the end of the session, you will be paid and all travel costs covered.

For more information: To find out more email Helen Baxter helen.baxter@bristol.ac.uk or Julie Clayton julie.clayton@bristol.ac.uk and confirm which date works best for you.

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Provide your views on research funding applications

Closing date: Friday 11 October

For: Open to everyone who has experience of using NHS or social care services as a patient, service user or a carer or as a representative of patients, service users or carers.

What: Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSG CCG) are looking for people to join their remote patient and public involvement group. This work will involve assessing funding applications from researchers looking to work with the local NHS. Public contributors will read funding applications, score the applications using a pre-set scoring sheet, and provide feedback where appropriate.

When: Applications will be sent to reviewers on Monday 21 October 2019 and reviews to be completed by Friday 8 November.

Where: The funding panel membership will be entirely conducted by email.

Payment: As a public contributor you will be offered a fee at the point when you are asked to become involved in reviewing a research funding. Reasonable expenses associated with your involvement will be reimbursed.

For more information: Click here to download further information including how to apply. You can also contact Kat Bagi on 0117 900 2227 or Katalin.Bagi@nhs.net to discuss the details.

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Training for NHS volunteers and public contributors

NHS England have two upcoming training courses for NHS volunteers and public contributors or patient voice partners.

Patient and public voice partners training course

The two-day interactive patient and public voice partners training course is aimed at people who are involved in NHS England and NHS Improvement or supporting health and care transformation programmes on a regular basis. The next cohort is taking place on 13 and 14 November in Leeds (deadline for applications is 4 October). Through the course participants will explore how they can effectively work in partnership with a range of stakeholders to influence change and develop their skills and confidence – making the most of their role. Travel expenses and accommodation will be provided based on individual need. To find out more, read the course advert, complete the application form and email england.ppve-learning@nhs.net

Understanding the Health and Social Care Environment

The free online training course Understanding the Health and Social Care Environment is accredited by Certa and available to current NHS volunteers. The course is divided into three sections: about the stakeholders, about tools and methods for influencing health and social care, and about how you can present your community issues to have maximum impact for positive change. The next course starts on 19 November 2019 (deadline for applications is 4 November). The course ends with a full day of assessed presentations where participants have an opportunity to share the projects they have been working on as part of the course, gather practical advice on how to develop their work further, and to network. For more information about the course, read the course information here, complete the application form and email england.ppve-learning@nhs.net

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