Matriarch

Transforming Healthcare Research Through Creative Design

How can expertise become more inclusive and accessible? This question drove a recent curriculum collaboration between healthcare researchers at the Royal Brompton Hospital and MA Communicating Complexity students and tutors, resulting in a creative approach to understanding the experiences of mothers with Cystic Fibrosis.

The challenge

As modulator therapy dramatically improves life expectancy for people with Cystic Fibrosis, more and more people with CF are choosing to start families. However, crucial questions remain unanswered about the safety and impact of these treatments during pregnancy and breastfeeding. People with Cystic Fibrosis want evidence-based information to make informed decisions about their reproductive health and medical teams across the country need to understand how best to support and care for people with CF and their newborn children.

The opportunity

The Matriarch team, led by Dr. Imogen Felton and Professor Jane Davies, recognized that this wasn't just a medical research challenge—it was a communication and accessibility challenge that could benefit from creative, systems thinking approaches.

Working with eight patient experts, the research team conducted in-depth interviews, coding and analysing the complex factors that influence the motherhood journey for women with Cystic Fibrosis. After producing their own thematic analysis, they partnered with us on MA Communicating Complexity to explore ways to transform these data into visual systems maps that could make the interconnected nature of this healthcare challenge visible and understandable.

Knowledge Exchange in Action

This collaboration was a process of active knowledge exchange. Doctors in the Matriarch project brought their clinical expertise and qualitative data. Students and tutors on MA Communicating Complexity contributed qualitative systems mapping methodologies and methods, and communication design skills. Most importantly, the voices and experiences of women with Cystic Fibrosis remained at the centre throughout, ensuring that their expertise as experts with lived-experience drove both the research questions and the creative outputs.

Students learned:

• Qualitative systems mapping methodologies

• Qualitative analysis - translating interview data in variables and visual relationships

• Collaborative design processes in healthcare contexts

Researchers gained:

• New ways to visualise and communicate complex healthcare dynamics

• Insights into collaborative, participatory design processes

• Methods for translating Qualitative research into new forms of actionable information

From complexity to communication

In the project, we produced a collection of individually and collectively-created systems maps that revealed the intricate relationships between the medical, social, emotional, and practical factors impacts reproductive choices for people with CF. These visualisations transformed interview data into patterns, themes and insights that will now be used to evolve service provision and support further research and healthcare policy.

Individual interview maps allowed students to dive deep into personal stories, while the collective systems map revealed broader patterns and feedback loops within the healthcare system itself.

Impacts

The visual outputs were presented at the Creative Health and Wellbeing Festival at Central Saint Martins, reaching audiences beyond clinical teams and the course. But the impact extends far beyond a single presentation.

"It's already such a utility to us to see the priorities for our next steps in genuinely iterating our service development for future parents and fathers, and peer-to-peer connection. So it is going to have a very significant impact on what's going to happen over the next 12 months."
— Dr. Imogen Felton, Matriarch team lead

The collaboration has provided the research team with concrete tools for strategic decision-making. As Dr. Felton explains, the visual maps reveal "a way for us to think about micro and the macro policy decisions and management and directions and to make the case for funders.”

Over the next three years, this work will inform the development of the service for people with Cystic Fibrosis and their families, while also supporting healthcare teams across the country to provide better, more informed care.

A methodological collaboration

The collaboration has produced more than just beautiful visualisations—it has created a new ways of communicating the impact of holistic healthcare services.

"This work provides a tool for us to demonstrate measurable impact. We've not really been able to do it thus far, and this is a really innovative route and key into that, unlocking those things that you can see have such transferability in other spheres."
— Dr. Imogen Felton

The visual approach has revealed insights that traditional research methods might miss. As research team member Becky noted,

"I'm absolutely fascinated by some of the things that you've pulled out of this and how it really changes perspectives on some of it."

The combination of visual and written approaches creates a more comprehensive communication strategy:

"We're well covered for the written side of the research, we're now in a position to get both sides (written and visual) running together, which is just going to strengthen it and get through to a lot more people."

A model for inclusive expertise

By treating people with Cystic Fibrosis as both community members and experts, and by using visual methods to make complex experiences understandable as a system, this collaboration tested an inclusive model of sharing, developing, and applying expertise.

What made this collaboration particularly powerful was the ethical sensitivity all participants brought to the work. As Dr. Felton reflected: "You have all articulated a certain sense of sort of an ethical responsibility to your subject, which is maybe not standard through this work but it's really, really welcome and thank you for bringing such sensitivity to the project. It's been invaluable for us. More transdisciplinary work like this please."

This project represents an ongoing collaboration between the Royal Brompton Hospital Matriarch research team and the MA Communicating Complexity program, demonstrating the power of creative methods in healthcare communication and patient-centered research.