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