“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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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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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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Enabling meaningful contributions: a new report on PPI

According to The Healthcare Improvement Studies (THIS) Institute at the University of Cambridge, there has been a growth in patient and public involvement (PPI) in research over the last few years. They were interested in the evidence around what works, how and why so they commissioned RAND Europe to conduct a rapid review of the evidence base on PPI in research.

RAND Europe are a not for profit research institute that helps to improve policy and decision making through research and analysis. Their report ‘Patient and public involvement and engagement in research; enabling meaningful contributions’ aims to support organisations and initiatives seeking to involve patients and the public in research in a meaningful and effective way.

They conduced a rapid evidence assessment and interviews with experts, and examined why and how patients and the public get involved with research, what enables meaningful involvement, associated challenges and potential enabling mechanisms, the impact of PPI, and the evaluation of this activity.

Based on these insights, the report makes the following recommends for engaging patients and the public in healthcare research:

  • Think carefully about who to involve and why.
  • Ensure roles of PPI contributors are clear and well communicated.
  • Ensure that PPI contributors are well informed and supported to effectively engage.
  • Think about ethical considerations.
  • Build in monitoring and evaluation mechanisms.
  • Report on the methods used to engage patients and the public and on involvement outcomes.
  • Design efforts to recruit and retain patient and public contributors in a way that reflects the diverse factors which motivate them.
  • Consider the mix of approaches that will allow for effective awareness raising and recruitment.
  • Enable engagement through a mix of levers.

The full report can be downloaded here or from RAND’s website.

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Get involved in The People’s Trial

The People’s Trial is a new and exciting way to participate in scientific research, where participants decide all the major steps of a randomised trial. This initiative is being run by the Health Research Board-Trials Methodology Research Network (HRB-TMRN) based in NUI Galway in Ireland.

The People’s Trial is an online space where people can contribute to a randomised trial through six phases. The first phase has now been completed but you can sign up to their mailing list to hear about phase two; choosing the final trial question from everyone’s suggestions. Anyone can take part – you don’t need special skills or training. It’s a fun, free way to enjoy science while doing a little bit of good in the world.

A randomised trial is;

“A study in which a number of similar people are randomly assigned to 2 (or more) groups to test a specific drug, treatment or other intervention. One group (the experimental group) has the intervention being tested, the other (the comparison or control group) has an alternative intervention, a dummy intervention (placebo) or no intervention at all. The groups are followed up to see how effective the experimental intervention was. Outcomes are measured at specific times and any difference in response between the groups is assessed statistically. This method is also used to reduce bias.” National Institute for Health and Care Excellence (NICE)

The People’s Trial aims to help the public learn about randomised trials, to understand why they matter and to be better equipped to think critically about health claims. It will also help researchers learn about how best to involve the public in the steps of a trial process. This in turn will help influence other trials to be better designed and implemented in the future.

Find out more and take part here.

 

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Top five tips for facilitating public involvement

By Rosie Davies, Research Fellow (Patient and Public Involvement), People in Health West of England

Get any group of people together and you can be sure there will be different views and personalities. In public involvement meetings we love those different voices, however, in order to allow everyone to be heard, not just the loudest person, some facilitation skills are required.

At People in Health West of England (PHWE) we offer a half-day ‘enhancing facilitation skills’ workshop to help people run meetings about health issues with patients and members of the public. The workshop is run by Rosie Davies; Research Fellow at PHWE, and Cathy Rice, a member of the public who has been involved in health research.

Here Rosie shares her top tips for facilitating public involvement groups.

 

On 19 June Cathy and I ran our popular ‘enhancing facilitation skills’ workshop with participants coming from a range of backgrounds including researchers, public involvement staff, voluntary organisations and the public sector.

During the informal and interactive workshop we covered; considering what’s important for members of the public attending meetings; agreeing ways of working together; thinking through different aspects of the facilitator’s role; as well as adapting facilitation style to suit different situations.

Our top five tips for facilitating public involvement are:

1. Agree ground rules

Agreeing ground rules helps to shape expectations and support you and the group to stay on track. It can also build trust and provide a reference point if you need to challenge behaviour later on.

2. Co-facilitate with a public contributor

Having a member of the public as a co-facilitator or co-chair helps to create a sense of shared ownership and ensure that acronyms and buzzwords are avoided.

3. Stay focussed

It is important for you in your role as facilitator to keep the group on track and manage contributions effectively. That means stimulating constructive and focussed debate whilst allowing everyone to have a voice.

4. Be prepared

Having a good meeting includes planning in advance, following up and feeding back afterwards, as well as work during the meeting itself. Think about what is important to the group members, from clear directions to the venue to post-meeting debrief and support.

5. Manage different behaviours

Strategies to cope with different behaviours and vulnerability are useful to build your confidence. During the workshop we share real life examples and discuss various strategies and techniques to ensure all group members can contribute to a successful meeting.

Very friendly environment and facilitators were very good and friendly 😊

The fact that the trainers had ‘lived experience’ of mental health and health issues [worked well]

Really good workshop – very well modelled!

I feel more confident about facilitating

[I am] so pleased for tips on how to deal with different personalities. This is great – not just for facilitating!

Participants at enhancing facilitation workshop June 2019

Here are just a few of the changes participants are going to make as a result of attending the June workshop:

  • Get better on ground rules now I know what they’re for
  • Try to be more reflective when faced with different situations as a facilitator
  • Use volunteers to co-facilitate
  • Think about how I can provide feedback to [public contributor] members more effectively
  • Plan for better pre-event communication and make a checklist for facilitating
  • Ensure that…public contributors…have opportunities to co-chair

Would you like to learn more and build your confidence in facilitating public involvement groups? We are holding another workshop on Wednesday 9 October in Bristol. You can sign up here.

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NIHR Future-Focused Leadership Programme is open for applications

The NIHR academy have recently announced that the NIHR Future-Focused Leadership Programme is open for applications. The closing date is Friday 9 August at 1pm. For the first time, applications from public contributors involved in strategic activities in the NIHR are invited.

The new Future-Focused Leadership Programme enables you to develop your capabilities and effectiveness as a leader by identifying and reflecting on your strengths and areas for development. To join the programme, you will be a current leader based within NIHR or delivering a national role for NIHR. This could be as a public contributor involved in governance and leadership. You will be developing into or taking up leadership roles at the senior level, facing significant leadership challenges, where support will be most needed and impactful.

The programme will enhance skills in leading across organisational boundaries, leading strategy and change and influencing others to achieve the strategic aims of NIHR. Alongside your existing experience and leadership skills, the Future-Focused Leadership programme will provide time for reflection, refreshing existing skills and learning new ways of working which will support:

  • On-going self-awareness and recognising the impact and influence leaders have
  • Cross departmental collaboration with senior leadership
  • Creating an impact across the wider system
  • Developing team members and emerging leaders to maximise their potential.

This application window will be for the first two cohorts of the Leaders stream; Cohort 1 starts in late September 2019 and cohort 2 in January 2020. The third cohort is anticipated to start in January 2021 (with applications in summer 2020) so there is a further opportunity to participate at a later date.

This prestigious 12-month programme will consist of a blended learning approach, including face to face workshops and virtual, online sessions.

Further information on the format and content of the programme and how to apply is now available at www.nihr.ac.uk/fflp

If you have any questions please contact leaders-programme@nihr.ac.uk

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