The Idea: Researchers want to know your thoughts on having genetic testing (DNA testing) to look genes that can put you at risk of cancer This test can be done by taking a mouth swab or by doing a blood test. We would test for genes including BRCA and Lynch syndrome. These genes can be passed onto your children and affect other members of your family. If we find you carry these genes other members of the family could be tested.

The question: They want to hear about your experiences around colposcopy and your views on how acceptable genetic testing might be would be for you.

When: 20th of January 2021

How:  This will be done over an online platform like Zoom. We will lay out the idea and then explore your views on the matter. It should take no more than 2 hours.

Who: They ideally want around 8-10 women over the age of 18 years who have experience of using colposcopy services or who have engaged in the national cervical screening program/smear test

Why: This will help them develop a research idea that really does have the potential to save numerous lives. They will also reimburse you £25 for your time and help. Furthermore, if you were interested, there would be opportunities in the future to continue to shape this research.

If interested or for more information please contact nr3546@bristol.ac.uk.
For more information about Dr Neil Ryan please go to: http://www.bristol.ac.uk/clinical-sciences/people/neil-ryan/overview.html

The Idea: Researchers want to know your thoughts on having genetic testing (DNA testing) to look genes that can put you at risk of cancer This test can be down by taking a mouth swab or by doing a blood test. We would test for genes including BRCA and Lynch syndrome. These genes can be passed onto your children and affect other members of your family. If we find you carry these genes other members of the family could be tested.

The question: They want to hear your views on how acceptable this would be for you and hear about your experiences.

When: 20^th of January 2021

How: This will be done over an online platform like Zoom. We will lay out the idea and then explore your views on the matter. It should take no more than 2 hours.

Who: They ideally want around 8-10 women over the age of 18 years who have a lived experience of ovarian cancer.

Why: This will help them develop a research idea that really does have the potential to save numerous lives. They will also reimburse you £25 for your time and help. Furthermore, if you were interested, there would be opportunities in the future to continue to shape this research.

If interested or for more information please contact nr3546@bristol.ac.uk.
For more information about Dr Neil Ryan please go to: http://www.bristol.ac.uk/clinical-sciences/people/neil-ryan/overview.html

Involvement Opportunity Title:  The effects of antidepressant withdrawal on mood and neurocognitive function

For: Patients with experience of taking antidepressants who have discontinued at least one antidepressant medication type in the past (e.g., Prozac, Citalopram) and who may or may not be taking antidepressant medication currently.

What:  A PhD student is preparing to conduct an online study investigating the effects of withdrawing from antidepressant medication on mood and emotion/social processing. I am looking for participants who are interested in sharing their experiences of antidepressant medication use and in particular, answering questions around withdrawal. I am also hoping to get feedback on my research questions, study design and study materials, with the aim of making the research more accessible and reducing participant burden.

When: If interested please email to discuss arranging an online session which could last up to an hour. Sessions will be arranged from week beginning 18 Jan 2021 until we have enough respondents.

Where:  Online (MS Teams or Zoom call)
Expenses: Volunteer basis
Closing Date: 30 Jan 2021 (first instance)

For more Information: 
please email Raqeeb Mahmood, rm2377@bath.ac.uk or go to https://www.swdtp.ac.uk/profile/raqeeb-mahmood/

Common Ambition Bristol is a major new project with people of African and Caribbean heritage working in partnership with health care professionals to increase HIV testing and awareness and reduce HIV stigma in Bristol. For this project to be a success, the project team need people of African & Caribbean heritage to work together with them to help develop news ways to tackle HIV. There will be various paid and volunteer opportunities to be involved in the project. More information here

The project is being led by Brigstowe (Bristol-based charity for people living with HIV), in partnership with African Voices Forum (Bristol-based network of African and African-Caribbean community organisations). They will be working in collaboration with African and Caribbean communities, health care professionals from Unity Sexual Health and public health teams from Bristol City Council to introduce new ways to increase the uptake of HIV testing and broader sexual health services. Researchers from the University of Bristol will work in collaboration with community members to evaluate the project.

Eligibility: A person of African and Caribbean heritage living in Bristol or the surrounding area.

When: The project team are holding an online launch on Tuesday 2nd February from 4.30pm to 5.30pm – where you can find out more about the project and how you can help shape it – please register here. If you are interested in finding out more about this project and are unable to attend the launch event, please email info@brigstowe.org

Role: There are six paid roles to be part of the Project Delivery Group which will meet monthly and lead the project. The team will also be looking for four people to help with the evaluation of the project, also paid roles.

Diversity: As this project directly relates to the lived experience of being a person of African and Caribbean heritage, the project team are looking for individuals from these communities.

Have you called NHS 111 worried about COVID symptoms?

The Universities of Bristol, Oxford and Southampton are looking for six members of the public to join their advisory panel.

The role is open to any patients, parents or carers with experience of calling NHS 111 between March and June this year for themselves, or on behalf of another individual, with symptoms that they were worried could be COVID-19.

There team of researchers from the Universities of Oxford, Bristol and Southampton, are planning to listen back to recordings of NHS 111 phone calls. Then they will identify and describe common caller concerns, and how call-takers manage these concerns. They will also explore how call-takers make sure callers know when and how to seek further medical help.

The role of lay advisor is flexible but could include:
• Helping them choose the most important things to include in training for call takers
• Helping to plan the best ways to communicate and share their findings with the wider public.

You could take part in a group video conference, or talk to our researchers privately by phone, whichever you prefer.
You will receive online shopping vouchers to recognise your contribution.

Please get in touch by 15th December
Their website is https://calling111aboutcovid.wordpress.com/
Or email the study team via open-project@bristol.ac.uk

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.

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.

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

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.

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.