Reflections from lived experience contributors and researchers on effective collaboration in the trial of a digital parenting intervention: exploring unexpected outcomes of patient involvement and engagement.

In the world of health research, there is a growing recognition that the people who will eventually use a new treatment or service should help design it from the start. This approach, known as patient and public involvement, moves beyond simply asking people to sign up for a study. Instead, it invites them to sit at the table with scientists, offering their real-life experiences to shape how the research is conducted. The idea is that a study done with the people it affects is more likely to be relevant, more likely to be trusted, and less likely to waste time on questions that do not matter to them. While this partnership is now a standard requirement for many research grants, the true value of the relationship has often been measured only by how well the final study performed. What has remained less clear is what happens to the people doing the work themselves when they collaborate as equals. Does this partnership change the researchers, and does it change the parents or patients who join the team?

A five-year project called OPTIMA, which tested a digital parenting app for families waiting for child mental health support, offers a rare look into this dynamic. The study focused on a group of eleven parents who had navigated the difficult journey of seeking help for their own children. These parents were not just subjects of the research; they were hired as a panel of co-researchers to work alongside the academic team. The goal was to see how this collaboration played out over time and what unexpected lessons emerged for everyone involved. The findings suggest that when researchers and parents work together as genuine partners, the benefits extend far beyond the data collected. The process created a supportive community for the parents, helped them gain new professional skills, and taught the researchers how to communicate with greater empathy and clarity.

The OPTIMA trial began with a clear problem: many families were waiting over a year, sometimes even two, to see a specialist for attention and behavioral issues. During this long wait, parents often felt isolated and unsupported. The research team developed a digital tool to help parents manage their children's behavior during this waiting period. However, before the tool could be tested, the team needed to ensure it was something real parents would actually use. This is where the panel of eleven parents came in. They met regularly with the researchers, sometimes online and sometimes in person, to review every part of the study. They looked at the language used in emails, the design of the app, and the questions asked in interviews. They even helped analyze the stories parents told after the study was over.

The collaboration was built on a foundation of flexibility and mutual respect. The researchers did not treat the parents as a separate advisory group but as active members of the team. They understood that the parents had jobs, families, and other commitments, so they recorded meetings for those who could not attend and allowed for flexible deadlines. In return, the parents brought a perspective that no academic could replicate. They pointed out when language sounded too clinical or when a reminder might feel like a nagging text message rather than a helpful nudge. One researcher noted that getting feedback from people who did not view the world through an academic lens was a valuable learning curve. It forced the team to present information in a way that was accessible to families who were already overwhelmed.

As the project progressed, the parents discovered they were gaining more than just a sense of purpose; they were acquiring tangible skills. Many had not worked in research before, yet they learned how to analyze interview transcripts, edit academic papers, and even record podcasts. One parent, who had never felt confident speaking in public, found the courage to share her story on a podcast after being supported by the team. Another parent noted that the experience helped her advocate more effectively for her own child's needs in the education system. The panel became a source of strength for each other. For parents of neurodivergent children, who often describe their journey as lonely and exhausting, finding a group of people who truly understood their struggles provided a sense of belonging that was deeply therapeutic.

The researchers, too, were transformed by the experience. They reported a deeper understanding of the isolation parents feel during the referral process. This empathy influenced how they communicated with study participants, leading to a high retention rate where most families stayed in the study for the full twelve months. The parents' input helped the team make decisions that kept the study relevant and sensitive to the families' needs. The researchers realized that the lived experience of the parents was not just a nice addition to the study but a critical asset that improved the quality of the science itself. They learned to value the insights of non-experts as highly as their own academic training.

Despite the success, the team also identified areas for improvement. They noted that the parents were not involved from the very beginning of the app's design, which meant some early ideas could not be changed. They also realized that when the five-year project ended, the sudden loss of this community was difficult for everyone. The researchers acknowledged that they should have planned earlier for how to support the parents after the study concluded, perhaps by helping them transition to other roles or projects. This reflection highlighted that meaningful partnership requires thinking about the entire journey, not just the research period.

The study suggests that the most effective collaborations happen when everyone is treated as an equal. It is not about researchers telling parents what to do, or parents simply giving their opinion. It is about a shared space where different kinds of knowledge—academic and experiential—are valued equally. The parents in the OPTIMA trial gained confidence, new skills, and a supportive network. The researchers gained a more humane approach to their work and a better understanding of the people they were trying to help. The result was a study that was not only scientifically sound but also deeply human, proving that when science and lived experience walk together, the path forward is clearer for everyone.