Author: Justine Alford

What’s co-production in research?

A photograph of a woman and a man at an exhibition.
Image credit: James Retief

Imagine this hypothetical scenario: a group of researchers are working on novel ways to detect early warning signs that a patient’s condition is getting worse. They think a wearable device that automatically alerts both patients and healthcare professionals to potential problems would be an innovative solution to enable earlier detection.

So the team members put their heads together and come up with a new wearable sensor that they think would greatly benefit patients and professionals alike. But when they test it with patients for the first time, they don’t get the feedback they’d hoped for. Users find it awkward, difficult to set up, clunky and uncomfortable. So much so that most people stopped using it within a day, leaving the researchers with no choice but to go back to the drawing board.

How could this costly situation have been avoided? By better involving the people who this work was designed to benefit in the first place. More and more researchers are realising the value of involving patients and the public in their research because of the unique insight and relevant experience they can offer. But co-production is about more than simply involving patients and the public. In true co-production, researchers work with these individuals throughout the entire project – from start to finish. And for research like the above, they’d work with healthcare professionals, too. They make a team that’s truly equal and collaborative.

The key difference between co-production and more traditional forms of patient and public involvement is that hierarchy is stripped away entirely – power is shared and decisions are made collectively. Everyone listens and respects each other’s expertise, and all members gain something from the experience.

What have we done in a co-produced way?

One of our major co-production journeys has resulted from an innovation event that we helped deliver. This workshop brought together lots of different people including people with experience of hearing loss, designers, clinicians, researchers and charity workers, to come up with innovative research ideas around hearing loss.

This event was different to more traditional meetings in many ways. We shared a creative space, used interactive activities and had strong facilitators to ensure all voices were heard. Everyone worked together, listened to each other and fed in to all of the ideas, so there was joint ownership of all the concepts.

A photograph of the hearing birdsong installation, showing the yellow bird boxes
The Hearing Birdsong installation. Credit: James Retief.

Since then, we’ve been working with a diverse team, brought together at the workshop, to develop one of the ideas: Hearing Birdsong, which is looking to raise awareness of hearing loss. We created an enjoyable and interactive experience for the public, with an installation of bird boxes that emit birdsongs at different frequencies that you might lose if you are experiencing hearing loss. This inviting space ultimately aimed to raise awareness of hearing loss.

Helpers were on hand to give visitors information about hearing loss, so they could seek further advice if needed or sign up for a test with an audiologist. We’re now looking to continue this work in a co-produced way to reach less-often heard voices in London, and begin to help the millions of individuals in the UK with unaddressed hearing loss.

What other projects have we co-produced?

Digital tools like social media, wearables and smartphone apps could be a great way to help address growing mental health needs, but there is still a concern that technologies are being developed without substantial evidence or input from the people they aim to help. One of our projects is looking to understand the acceptability and feasibility of using technologies to detect deterioration of mental health in young people, through working with young people with lived experience of mental health difficulties throughout the project.

A photograph of Lindsay presenting a poster of her research with one of the young people she worked with.
Research leader Lindsay, left, presenting her work with one of the individuals she involved in her research.

For this work, the young people were trained to carry out interviews with young participants who have current mental health problems, and to analyse the resulting data. They built a good rapport with the participants and, in some instances, understood the data in a deeper way (compared to a researcher) due to their relevant lived experience.

Not only has their involvement clearly added to the results, but the young people also gained new skills in data collection, analysis and team working. They’ve since co-authored two papers and spoken at conferences about the research; other groups are also now using this model of co-production for their own research projects.

What have we learned about co-production?

Our experiences of co-produced projects have unravelled numerous benefits, including positive impacts on society or health. It is indeed a journey and people learn by doing along the way. As with any research endeavour, there were, of course, bumps in the road. We’ve found that co-producing research takes time, because trust and relationships need to be built between new people, who might have different backgrounds and skills.

Individuals might bring an agenda or have different goals, but raising those differences and allowing a safe space to discuss them helped to ensure everyone was on the same page. Having face-to-face meetings and allowing time for people to bond socially, for example over coffee and cake, helped grow relationships and increase team morale. Regular communication was key to help keep up the momentum and ensure that everyone had the chance to voice their opinions.

While we found that there doesn’t need to be a specific leader, one person still needs to take the driver’s seat. This person is crucial to help coordinate group members and meetings, push the project forward and ensure tasks are completed.

Overall, we’ve found co-production is a rewarding experience, can generate impactful results and creates a group of passionate people that can make greater progress than the individuals alone.

Why sharing leadership in healthcare matters

Hands together in a circle

By Dr Lisa Aufegger, Research Associate

Alongside the inherent challenges of the job itself, working in acute healthcare teams comes with another layer of complexity.

On a regular basis, staff will interact with highly specialised professionals from across different disciplines. This means that team members such as anaesthetists, nurses and surgeons need a high level of shared understanding, not only in relation to their main objective but their roles and responsibilities, too.

Shared leadership (SL) – where leadership working relationships are distributed and team members’ unique roles defined – has been proposed as a way to foster effective team performance in such situations. And it’s the focus of my latest research. (more…)

Project SAPPHIRE: Making the most of precious health data

By Joshua Symons, Director of the Institute of Global Health Innovation’s Big Data Analytical Unit

Patient data is precious. It’s a resource that many researchers and clinicians use to improve healthcare and therefore the lives of patients and health professionals. That’s why we want to make sure it’s used in a way that’s both effective and safe. (more…)

Our Co-production Journey: From Sandpits to Bird Boxes

A picture of yelllow bird boxes at a pop-up event.
Image credit: James Retief @jretief11

By Anna Lawrence-Jones (co-written with Jean Straus).

This article originally appeared on the UCL Public Engagement blog and has been reposted with permission. Visit the blog to read more about the UCL Centre for Co-Production in Health Research. 

In my former job at Cancer Research UK, I organised Sandpit Innovation Workshops that brought together researchers, healthcare professionals and innovative thinkers to come up with novel research ideas to help solve a health challenge. Normally a three-day event, sandpits are a way to generate research ideas – which are inevitably more innovative and daring in this spontaneous environment – and get them funded quickly. But often, patient attendees were part of a panel which selected projects to fund, and were not part of the teams producing the ideas themselves. I often felt these were a lost opportunity for patients to have a greater role. (more…)

Why patient engagement matters

A female doctor talking with a colleague

By Dr Lisa Aufegger, IGHI Research Associate

Patient engagement has become a key priority in today’s health and care systems. And some have argued it’s essential for the sustainability of the NHS.

Patient engagement (PE), the involvement of patients in their medical process, is not a new concept. It first appeared in the late 80s, when the US Food and Drug Administration brought together patients, government, industry, and academia to identify and remove barriers to successful HIV drug and treatment development. Since then, PE activities have blossomed across clinical and non-clinical areas, and generated meaningful insight into and impact on quality improvement in healthcare service and delivery.


The Research Partners Group: A year on

By Alex Taylor, Research Partners Group member.

“I would recommend highly [the RPG] to other researchers”
– Researcher quote 15/08/2019

Just over a year ago my colleague and fellow lay member John Norton wrote a blog post introducing the newly-created Research Partners Group (RPG): An insider’s view of patient and public involvement. We’re a diverse group of 11 patients, carers and members of the public brought together by the Imperial Patient Safety Translational Research Centre (PSTRC). We were set up to help review research projects and researchers’ plans for involving people like us in their work.

Well, here we are just over one year later, and we have been very busy!


Digital data: a double-edged sword for safer healthcare

How can we make the NHS the safest healthcare system in the world? Can we harness the power of digital technology to improve patient safety? What digital innovations do we need to improve the safety of care, and what approaches are necessary to enable healthcare staff to interact with these innovations in technology?

These are big questions. But none too bold to be addressed at our recent NIHR Imperial Patient Safety Translational Research Centre (PSTRC) Symposium. By tackling challenging topics such as these, our event provoked impassioned discussion and debate while whetting the captive audience’s appetite with plenty of food for thought. (more…)

Does access to electronic health records by patients improve quality and safety of care?

By Dr Ana Luisa Neves, Research Fellow at the Imperial NIHR Patient Safety Translational Research Centre.

Over the last decade, incentives to adopt electronic health records have spread worldwide. Electronic health records offer many advantages, including an easier access to centralised health information by healthcare providers, patients and researchers, ultimately leading to a better coordination of patient care, greater efficiency, and better health outcomes. (more…)