Evidence
The video is illustrated with cartoon characters. The transcript is as follows:

[Dr Bean] Hello, my name is Dr Bean and welcome to the MAGIC study, part of the ongoing research helping young people who suffer with constipation. I'm a radiographer who will help show you how the process works.

[Beanlock] Woah there, hang up Doc.

[Dr Bean] Ah Beanlock, how can I help?

[Beanlock] You're sending our audience to sleep!

[Botson] I think we can take it from here Doc.

[Dr Bean] You've got it, Beans.

[Beanlock] Good day to you. My name is Beanlock and this is my assistant Botson. We're going to investigate the process of the MAGIC study group.

To begin with you'll be invited to the research center and asked to sign documents of consent with your parents or guardian, and a questionnaire.

The doctor will then give you three pots. Each pot contains 24 itsy-bitsy little bean shaped tablets that can be taken with water, fruit juice or even yogurt. The doctor will ask you to swallow 24 little beans each day, for three days, supervised by your parent or guardian. How you take them is up to you - one at a time, or all together in your yogurt, either way is fine.

On the fourth day you will come back. You will be asked to change into the clothes the hospital provides and remove any metal objects from your body like jewellery before having your first MRI.

MRIs may be scary but they can be a lot of fun. For you younger beans imagine you're in a rocket or even a submarine. If you have any concerns regarding the MRI please let the radiographer know beforehand. The MRI will last 15 minutes and after, you're free to go for the rest of the day.

[Timeline appears on screen]

[Beanlock] Botson, what's that?

[Botson] It's a timeline,Sir.

[Beanlock] Ah, very good.

[Botson] The participants of the study may need to come back for another MRI on day 7 and maybe for another one, three weeks later, depending on the results. Now Beany Q, over to you.

[Beany Q] Hello, this is Beany Q here, reporting live from within the gut. As you can see I've taken the epic journey of what we call the ‘gut transit time’.

[Botson] Can you tell us a little more about this in detail Q?

[Beany Q] Certainly, you curious bean. When you swallow the tablets they travel through the gut like so [animation of tablet travelling down the gut]. After four days you'll have your first MRI - which means selfie time for us!

Depending on what we see from the MRI if we do spot any of the tablets present on the photos we will ask you to return for another MRI and repeat the process until the tablets are no longer visible.

After the final visit you'll be able to return to your normal hospital and doctors appointments.

[Botson] Cool beans.

[Beanlock] We're not beans Botson, we're tablets.

[Botson] You're right, Sir. We're not beans: we’re the MAGIC beans.

Public involvement: long-term partnerships with children and young people can improve research design

Patients and the public can provide researchers with fresh insights or recommendations based on lived experience. But it is sometimes challenging to involve public contributors meaningfully, especially when they are young.

Researchers in the MAGIC study worked with a group of young people (a Young Persons Advisory Group, YPAG). They wanted to test a method of diagnosing constipation in children. The YPAG helped the researchers make sure their study was suitable for children. 

Both sides benefited from the partnership. The YPAG helped shape the research project; young people came up with original ideas on product design and packaging, information leaflets, and a study website. They said they enjoyed attending sessions, learning about and contributing to research, and developing new skills. 

The long-term nature of the partnership led to its success, the researchers believe. They encourage other researchers to embrace long-term partnerships with the public. That means planning engaging, worthwhile activities, and keeping public partners in the loop all the way through the project.

What’s the issue?

Involving patients and the public in the design of research can improve studies. Public contributors offer a different perspective, may have relevant lived experience, and can help gear the research towards the target audience.

However, it can be challenging to involve the public in a meaningful way – rather than carrying out a tick-box exercise. Working with children and young people can be especially complicated as age-appropriate activities are needed to keep them engaged.

Researchers studying constipation in young people (the MAGIC study) wanted to work with a group which could offer insights. This common condition is distressing, especially when there is no obvious cause. The researchers developed a way of diagnosing underlying problems. They created a mini-capsule that is swallowed, and its progress through the gut is watched on a scan (magnetic resonance imaging, MRI). 

The researchers wanted to recruit children to test whether the mini-capsules were effective. They formed a partnership with a Young Persons Advisory Group (YPAG) from the beginning of the project, to help them tailor their research plans. The aim was to make sure the study was acceptable for the children taking part.

What’s new?

The YPAG consisted of young people between the ages of 8-18 who were interested in research, though did not necessarily know about constipation.  

YPAG sessions were held every few months for five years and were each attended by an average of 16 young people. 

The researchers tried to plan child-friendly activities that were suitable for all members, regardless of their age or level of literacy. They planned meetings at locations other than hospitals, which the young people preferred. The researchers aimed to guide, rather than direct, the group, encouraging free expression of ideas, and an equal relationship. And they kept the young people in the loop with study updates.

The YPAG helped shape many aspects of the research. Examples of their contributions include:

  1. Creating a model of the gut: as an icebreaker, the YPAG crafted a 3D marble run model of the gut, with drain pipes and connectors. This allowed members of all ages to understand how the gut works, and the model was used in future demonstrations.
  2. Mini-capsule design: the YPAG’s input led to a smaller and more rounded design. The group agreed that the mini-capsules should be flavourless, and that special shapes (hearts or flowers), although more interesting, were not preferred as they were harder to swallow.
  3. Mini-capsule packaging: the group considered how to make packaging more child-friendly. They suggested that the capsule box should be small enough to fit into a child’s pocket.
  4. Information sheets: the YPAG considered what participants, and their parents/carers, would want to know, and what language to use. One member suggested separate information sheets for different age ranges. The YPAG reviewed and edited drafts, resulting in accessible sheets that were later praised by the study’s Research Ethics Committee.
  5. Animated videos: the YPAG members came up with the idea of an animation to explain the study to participants. This was more modern, eco-friendly, and memorable than pages of text. With the help of student animators, they designed, scripted, and narrated two cartoons explaining the study to younger and older child participants. 
  6. Study website: another original YPAG idea was a dedicated website to showcase the study. The YPAG has its own space where blogs and photos of the group’s sessions are posted
  7. Presenting and co-authorship: several YPAG members have spoken at academic conferences and are co-authors on scientific posters and publications – including this paper.

Why is this important?

YPAG input was highly valued. It shaped the study from start to finish and improved the study design and materials. 

Both the research team and the YPAG benefitted. YPAG members were proud to be involved. They enjoyed the chance to make contributions, learn about research, develop new skills, socialise with new people, and grow in confidence. 

The researchers believe the partnership was successful because it was genuine and sustained. They involved the YPAG at all stages and kept the young people up to date as the study progressed. 

What’s next?

The researchers are continuing their partnership with the YPAG. The YPAG has reviewed the design of a follow-on study, suggesting a change to the study design which means that patients in the standard treatment group, as well as the intervention group, will receive their test results. The YPAG members are invited to attend grant management meetings as full members.

The researchers had not anticipated the level of success of this partnership. They therefore did not collect data on the impact of the group during the initial work. From now on, the team will capture the impact of the YPAG involvement, recording their suggestions and feedback from sessions. 

YPAG members made recommendations on how to effectively involve young people in research. They say:

  • Do not patronise – build an equal relationship, based on respect 
  • Keep an open mind, be ready to listen to a range of opinions and take ideas on board; do not involve young people just to tick a box
  • Do not underestimate the contributions a YPAG can make
  • Involve the YPAG as early as possible – at concept – and keep the group engaged with frequent visits 
  • Keep the YPAG in the loop throughout, to increase understanding of the study and the opportunities for comments and improvements  
  • Make involvement fun, creative and provide an agenda for each meeting so the YPAG knows what to expect. 

Co-production and public involvement take time, but the researchers are convinced that partnerships are beneficial. They would encourage other teams to embrace public involvement as a long-term commitment and a strength of a project, rather than a time-limited input to tick a box. 

You may be interested to read

The full paper: Abrehart N, et al. “A little (PPI) MAGIC can take you a long way”: involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961). Research Involvement and Engagement. 2021;7:2 

The MAGIC study website.  

Animations created by the YPAG to explain the study to older and younger children

The young people in this study were from the Nottingham GenerationR YPAG. GenerationR- Young people improving health through research, is a national network of NIHR or NHS-funded YPAGs that aim to improve the design and delivery of clinical research so it is relevant for children, young people, and their families. 

The MAGIC study findings have been recently published in a separate paper which details the design of the new mini-capsules and their first testing in feasibility study: Sharif H, and others. Feasibility study of a new MRI mini-capsule device to measure whole gut transit time in pediatric constipation. Journal of Pediatric Gastroenterology and Nutrition. 2020;71:5 

Funding

This research was funded by two NIHR Invention for Innovation (i4i) Product Development Award grants.

Commentaries

Study author

We had the privilege to build a fantastic rapport with our YPAG over several years. Their enthusiasm and investment in our study has been overwhelming. We weren’t expecting to be still working with the YPAG five years on!

Co-production is not a quick process. It takes time to build and maintain a fruitful relationship, but the gains are proportional to the effort put in.

It is now well-recognised that patients and the public have a key role in steering health research. Our study demonstrates the impact of a genuine long-term partnership. We hope that these examples of good practice and of the real benefits of long-term rapport with one’s patient and public involvement group will help make involvement and engagement more genuine and sustained.

Nichola Abrehart, Research Fellow, School of Medicine, University of Nottingham 

YPAG members 

I like the fact that we are doing quite a lot for research as young people who think like the patients and we think from the patient’s perspective rather than the professional’s world – so it’s great to think we are helping the patients.

YPAG Member (15 years old)

Being part of the YPAG helps you to have an insight into the other side of things – as young people we go to the doctor and get medicine and we don’t see how that medicine comes to be or any of that process. So I think I understand a lot more about how things happen.

YPAG Member (16 years old)

Members of Nottingham GenerationR YPAG, speaking as part of this study

GenerationR Alliance

Engaging patients and the public as collaborators in research has been shown to improve research relevance and acceptability. Research should meet the needs of those who may ultimately use services or require care informed by the findings of such research, thus children and young people who are directly or indirectly affected by research fundamentally have a right to say what research is undertaken and the manner in which it is done. Young Persons’ Advisory Groups (YPAGs) provide a forum for clinical researchers and triallists to engage with children and young people on issues relevant to the design, conduct and translation of paediatric clinical trials.

Involving patients and the public, especially children and young people throughout the duration of such a long-term project is not an easy task. However, YPAGs were set up for that very reason and with skilled facilitators leading the groups ensures that members are fully supported, trained, and rewarded for their efforts. The MAGIC study is an excellent example of a mutual long-term partnership with a YPAG that benefited all involved. The study teams efforts to make this an enjoyable experience for young people should be applauded.

Jenny Preston, Coordinator of GenerationR Alliance, NIHR Alder Hey Clinical Research Facility 

Patient and public involvement advisor 

This was real co-production. Suggestions were discussed, taken up and had an impact on the design and management of the study. It should be held up as an excellent example of good practice for guidelines and policy.

The study highlights the need to build and sustain relationships with public contributors rather than holding the odd tokenistic meeting to sign off an idea. In order to fully engage with children, you have to find out what they think and what they need. It took time, commitment and an open-minded and inclusive view of recruitment to get this depth of interaction with young people. It took willingness to try out their ideas, which resulted in some very innovative additions to the study.

Carol Rhodes, Patient and Public Involvement Advisor, Keele University

Public contributor 

Health research should be made up of two parts: the researchers, and the patient body. Public involvement is collaboration with the common purpose of well being and progress. Active public and patient involvement is essential for effective results. The patient voice helps shape research and adds ‘lived experience’. This is a reality check that can never be undervalued.

As a public contributor involved in several projects, I am pleased to read about young people becoming part of that work. It is a step forward in effective practice. It represents a research procedure that results in relevance, transparency and general acceptance.

Elizabeth Lloyd-Dehler, Public Contributor, London 

Conflicts of Interest

None declared.