Category: Design and innovation

Not just for Christmas – how Xbox technology could help transform healthcare

A man with a robot in a laboratory
Xbox tech could soon offer a helping hand in operating theatres

Many will be wishing to discover an Xbox-shaped gift glittering under the Christmas tree this year. Aside from the seemingly endless hours of entertainment, joy, frustration and competition that these consoles offer, Xbox technology – and other similar gadgets – is finding uses outside of the gaming world, and in the healthcare research sphere. (more…)

Top tips for budding innovators

Photography by Fergus Burnett

Having an idea that could make a difference is only the beginning of becoming the next big innovator.

As we gear up for the opening of our 2019/20 IGHI Student Challenges Competition on 7 January, we’ve gathered some top tips from IGHI and Imperial College London’s many experts in innovation to help you bring your ideas to life.

These innovative individuals draw upon a wealth of experience and knowledge that they’ve built up from establishing their own start-ups or working in innovation.

Read on for their words of wisdom, and if you’re inspired by these, why not submit your global health project for our Student Challenges Competition in January, for the chance to win £10,000?

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Black History Month – celebrating IGHI people

Ovuefe and Davina

For Black History Month, we’re highlighting some of our talented and inspirational IGHI staff members. We’re proud of our staff who help our Institute thrive with its cutting-edge research.

Meet Ovuefe and Davina, who are passionate about working in health and their roles at our Institute. We caught up with them to learn a little bit more about what made them choose this sector, their careers, and what they hope to achieve here at IGHI.

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Playing with nature and technology for innovative children’s hospice care

Two young girls playing a game using plants
Blending design, nature and technology to improve children’s hospice care.

By Ivor Williams, Senior Design Associate

Every day, around 360,000 babies are born around the world. Most will lead long, healthy lives into adulthood. Sadly, a minority experience a very short life due to illness or live with a long-term or life-limiting disease. For these children, palliative care can transform their experience, helping them live with a greater quality of life, while also supporting their family and friends.

Palliative care is an active and total approach to care, from the point of diagnosis, throughout the child’s life, to death and beyond. As a holistic care it embraces physical, emotional, social and spiritual elements and focuses on improving the quality of life of everyone involved. It includes the management of distressing symptoms, care at the end of life and bereavement support.

Children’s hospices provide the most comprehensive palliative care. But globally, there is a chronic lack of them. The demand is high yet hospitals and other organisations have limited resources and capability to offer holistic care required. Hospice care has therefore traditionally been left to the charitable sector. Indeed, most children’s hospices begin life as families grouping together to create the service themselves, due to the rarity of many diseases and illnesses affecting children.

Thanks to advances in healthcare more children now survive their illness for longer, and live to adulthood. This means there is a greater need to act systemically about how hospice care is delivered. Developments in technology and changes in care delivery mean that the hospice service itself moves beyond the walls of a building, into the community. With this evolution in mind, what might innovative children’s hospice care look like now and in the near future?

Designing with children at the centre

As designers, technologists and clinicians at the Helix Centre, we’re using an approach called human-centred design to help transform children’s hospice care. This is a creative process that begins with the people we want to design something for – such as patients, their families and professionals – and spending time with them, to learn about their needs and understand the problems they face. It ends with innovative, tangible solutions tailored to meet those needs. We believe hospice care that can use design and technology successfully and meaningfully can transform the way professionals deliver care, and significantly improve the care experience for patients and their families.

To understand the human needs within the children’s hospice environment, we conducted interviews with families and staff; shadowed children’s hospice staff; reviewed the literature of potential technology applications; and profiled best-practice children’s hospices from around the world. These helped generate many key insights that drove our work, but some stood out as particularly important.

Firstly, we learned that every hospice we encountered offered emotional and psychological support for patients and parents, but only a few did so for siblings. Furthermore, for the family of an ill child, one of the biggest problems was often around the deterioration of the family unit itself. Siblings of an ill child would often become a carer to their brother or sister, spending lots of time in medical environments, and often losing opportunities to bond with their siblings in a way that other families would do normally.

We believe that innovative technologies could help better support family and professional needs, largely because their use in children’s hospices are very limited. There is a huge scope for change to support families, particularly siblings. We also learned of the unique spaces that children’s hospices created, and how that might support innovation.

Plant power

For a children’s hospice, a garden can be a place of refuge, play and relaxation. The leading hospices we assessed placed great value on the ability for children, young people and families to be in nature if they wish. The reason is clear: being in nature can take us away from ourselves, invoke feelings of calm and appreciation, and makes us feel happier.

A signpost about a garden at a children's hospice
Some hospices put great emphasis on outdoor space and interacting with nature.

After spending time in children’s hospices – both in the UK and abroad – we were inspired to consider the outdoor space to be as integral to the hospice service as any of the indoor facilities or medical care. It also provided an opportunity for us to investigate innovative approaches to holistic care, using new research and practices that are emerging in palliative care around the world, notably garden therapy. Furthermore, we saw this as a way to potentially meet the identified needs of children and families through the simple act of engaging with nature in a unique, specialised setting.

With that framing and insight we created a prototype: the Connected Garden. This unique product fuses the concept of horticultural, or garden therapy with meaningful uses of technology. Garden therapy uses nature to support wellbeing, and so our goal was to enable and support accessible use of garden space. We wanted to design something for every visitor and patient of the hospice.

The Connected Garden is an interactive ‘plant synthesizer’ that acts as a tandem activity between two children. We use plants as a physical touch device that generates an output – such as music and light – that enables children to play screen-based games and engage with each other in a highly accessible way.

A photograph of a plant connected to electronics
The Connected Garden merges technology with horticultural therapy.

A unique approach to palliative care

In our testing sessions with children and young people at the Helix Centre and St Mary’s Hospital, children playing with each other didn’t communicate verbally to cooperate. Instead they figured out how to touch or let go of the plants in order to win our simple games, through the feedback of the game itself. We think that children with limited speech and mobility but unaffected mental function could therefore really benefit from this type of approach.

As we observed, the experience seemed to take children away from the reality of being at the hospital. One child remarked they were scared of being at the hospital before playing, but was bright and upbeat afterwards. They seemed to be happy and immersed in the experience.

A photograph of plants connected to a computer that could be used in a children's hospice
Plants-as-interfaces could help children engage with their siblings in hospices.

We believe there is a fantastic opportunity to blend the technological approach in prototype with the horticultural therapy practices that are used in hospices, set in the unique garden space and interior spaces at the children’s hospice. The Connected Garden prototype is the first experimental step in developing holistic products and services for young people and their families.

We also believe it is important to bring the hospice outside to nature. We feel there is a huge opportunity for outdoor activities in which the children explore nature, play in safe surroundings, and experience the sights, sounds and smells of the outside world as part of an overall therapeutic experience.

We want to ensure that every child and family has access to the services they need, harnessing the best products, services and experiences possible. We believe that future hospice care that uses technology can transform the way that care is delivered and experienced, helping professionals, patients and their families alike.

You can see the Connected Garden prototype at the Imperial Lates event on 9th October. Register for free here.

Ivor Williams is a Senior Design Associate at the Institute of Global Health Innovation’s Helix Centre.

How robots in space could lead to better healthcare on Earth

An image of a robot's finger touching an astronaut's finger in space

Working in space comes with its fair share of challenges, to put it lightly. There’s the lack of gravity, extreme temperatures, intense cosmic radiation, delays in communication, clunky space suits, to name just a few things that astronauts contend with.

This complex environment means that tasks we would consider straightforward back on planet Earth, such as gripping and manipulating objects, are surprisingly difficult and time-consuming to accomplish. As humans continue to ramp-up their space exploration endeavours, attempting more daring feats and travelling deeper than ever before, scientists need to address these obstacles for future missions to be successful.

One potential helping hand could come in the form of robots. While the likes of R2-D2 and C-3PO remain in the realms of science fiction, robots have been used successfully in space for some time – think the ISS’s Canadarm, and the rovers trundling across Mars. But through project FAIR-SPACE, our researchers are hoping to improve the way that astronauts interact with them.

“We’re working on human-robot interactions in space, specifically how astronauts can operate robots from a distance,” says Dr Fani Deligianni, FAIR-SPACE researcher from IGHI’s Hamlyn Centre. “We’re aiming to enable more automation in space and to facilitate ways for people to be able to work with robots in a more collaborative way, and ultimately apply what we’ve learned to healthcare back on Earth.”

Sensing human capabilities and intentions

FAIR-SPACE, or Future AI and Robotics for Space, is a collaborative hub led by the University of Surrey that’s aiming to accelerate the development of artificial intelligence and robotics for space exploration. Deligianni and the Imperial College London research team are focussing on remotely, or tele-operated tasks in environments where it’s difficult for astronauts to travel safely.

Astronauts orbiting a distant planet from the safety of a station, for example, could control robots on the ground without having to land themselves. Robots could also make lighter work of much simpler operations like routine station maintenance, where the lack of dexterity offered by space suits, coupled with strength limitations due to deteriorating muscle mass from working in low gravity, create difficulties.

To develop better systems for such situations, the FAIR-SPACE work is focused on using virtual/augmented reality to run simulated tasks. In these simulations, the user operates a robotic arm – much like what happens, in reality, on the ISS. The researchers investigating a number of potential ways to improve performance. One of these is an emerging field called neuroergonomics, which studies the brain in relation to work.

“What we’re doing is monitoring the brain state of an operator to provide feedback that can hopefully enhance their performance, and also minimise performance differences between operators,” Deligianni explains.

An artist's illustration of a hololens headset underneath an astronaut's helmet.
An illustration of an astronaut wearing an augmented reality headset underneath his helmet.

How this works is a number of wearable technologies are employed to take various measurements from an operator, which are then fed into an AI algorithm. These readings include brain activity through an EEG skull cap, and eye-tracking through smart glasses (i.e. a hololens headset).

“The idea is that we integrate these measurements and use AI to determine the operator’s awareness and mental workload, and when their performance deteriorates,” says Deligianni. “We can then use the augmented reality feature of the hololens headset to provide direct feedback to the user as they’re working. This will hopefully improve their attention and make them more aware of the task at hand.”

Stress, sweat, share

The brain isn’t the only part of the body that the researchers are interested in. Dr Bruno Rosa and Panagiotis Kassanos are also developing flexible electronic sensors that can be worn on the body. These wearables would again monitor various different signals, including heart rate and a reaction to stress called galvanic skin response, where increased sweating changes the electrical characteristics of the skin.

The idea is that this information would be pooled to determine an individual’s stress levels, again with the ultimate aim of improving performance.

“When people are under pressure it can improve their performance up to a point because it makes the task more interesting,” says Deligianni. “But there’s an upper limit, beyond which performance begins to suffer. We want to be able to detect where this peak is and respond, either by alerting the operator or their team so that they can intervene and share the load.”

Fellow teammates aren’t the only option for divvying up tasks at critical times. This is again another opportunity for humans and robots to work together on a job, combining the strength and dexterity of robotics with the judgment and decision-making skills of a human.

“A major part of this work is shared autonomy – operating modes where the machine accomplishes part of the task, but the operator is in control to some degree,” Deligianni explains. “We want to find the right balance between the two for the best performance in a task.”

Already the group is exploring varying degrees of autonomy in their virtual reality simulations, coupling performance measures like gripping accuracy with the physiological signals collected through the wearable devices. “If we can find differences in performance, then this could indicate ways to effectively modulate their workload,” Deligianni says.
[youtube https://www.youtube.com/watch?v=KPF4Qm5ToqQ]

Watch this simulation, from Deligianni’s team, of an astronaut’s interaction with robotic systems at the ISS.

From robots in space to the operating theatre

At the moment the work is specifically looking at interactions in space, but the research could also be applied to other extreme environments on Earth where it’s dangerous for humans to be working. And while this research journey may seem an unconventional path for a Centre that’s fabled for its work in medical robotics, the project actually has roots in the operating theatre back on Earth.

Like astronauts, surgeons need to work on intricate and highly delicate procedures, under an enormous amount of stress. Space missions and surgery are also safety-critical and require specialist skills and lengthy training. Surgeons and astronauts also need to cope with incredibly high workloads, which is why Deligianni is collaborating with Hamlyn surgeon Mr Daniel Leff, who helped develop the “cancer-sniffing” iKnife, to share learnings between these two different yet parallel environments.

More than just rooted in medicine, Deligianni has aspirations that all of this work could have healthcare applications back on Earth. For example the group is working on a wearable electronic suit, or exoskeleton, that could not only facilitate task performance, but also tackle the issue of low gravity-induced muscle atrophy. “These exoskeletons could also help people who have musculoskeletal diseases or tremor,” Deligianni says.

“My hopes are that ultimately, we’ll be able to actually see this research used in healthcare and in space soon.”

Dr Deligianni gives thanks to Daniel Freer, Rejin Varghese, Shamas Khan, Anh Nguyen, Stephanie Pau, Yao Guo, Bruno Gil Rosa, Panagiotis Kassanos, Fani Deligianni, Robert Merrifield, Guang-Zhong Yang, who have all contributed to this project. 

Putting people at the heart of dementia research

People drawing on coloured paper at a design workshop
Credit: Helix Centre

By Justine Alford, IGHI Communications Manager

All around us, technology is making our lives easier. Google Maps has allowed us to ditch the A-Z; apps can bring you everything from takeaways to taxis; Alexa won’t let you forget your anniversary again; the World Wide Web is your never-ending guide to everything on this planet and beyond; the list is seemingly endless.

Yet while many of us may be most familiar with the convenience and shortcuts that everyday technology bestows us, its potential to positively impact our lives stretches far beyond this. Arguably one of technology’s greatest assets is that it is an enabler, allowing ordinary people to do more. And for people with dementia, it could enable greater independence, helping more people to stay at home, reducing hospital visits and delaying the need to move to a care home.

That is the foundation upon which Imperial College London’s new dementia research centre – part of the UK Dementia Research Institute (DRI) – was built. Led by Professor David Sharp, the Centre’s goal is to develop new technologies for a “Healthy Home environment”, a smart system that monitors people with dementia in a number of ways and enables early identification of health problems, leading to swift intervention and support. And our Helix Centre has partnered with this new research centre to make sure that people are put at the heart of these emerging technologies.

“People are becoming jaded that research in the lab won’t make a difference in the real world,” says Matt Harrison, designer working in the Helix team.

“What’s unique about this work is that it marries what happens at an academic institution with the expectations of the eventual users of the service and their loved ones. We’re really excited to help close the gap between research and the lives of people with dementia.”

An extra pair of hands

Dementia is major public health concern. There are around 850,000 people living with dementia in the UK, but that number is expected to rise to more than a million by 2025. And with dementia patients occupying a quarter of NHS hospital beds, and accounting for almost 70% of people in care homes, we urgently need ways to help our systems cope with the increasing strain on services.

A man cooking with a smart home device behind him on the kitchen counter
A smart speaker device like a Google Home Hub could support the work by creating a dementia-friendly interface between the person with dementia, the technology and the clinical and technical teams looking after them. Credit: Matthew Harrison

With effective treatments yet to appear on the horizon, one way to alleviate the burden is to keep people at home. But rather than simply diverting resources from one environment to another, the new centre for Care Research and Technology (CRT) wants to create a smart system that will help people with dementia to become more independent at home.

“What’s being developed is a smart home service integrated with a clinical dashboard that enables health professionals to keep track of how people are doing,” Matt says.

“The aim is for most of the technology to be passive within the home, so that people don’t have to actively engage with it. These parts will monitor people in a number of ways, such as looking at their sleep and movement patterns and detecting urinary infections. While others will offer a friendly helping hand, such as giving reminders for appointments.”

This system isn’t being developed entirely from scratch. Rather it’s being built on foundations already developed by the CRT’s collaborators, the University of Surrey. Having an existing model to augment will hopefully mean that the technologies can reach people sooner.

Design for dementia

A key part of this research endeavour is to make sure that what’s being developed truly meets the needs of those that it is designed to benefit – people with dementia, their carers, and healthcare professionals. That’s where Helix comes in.

Over the years researchers have begun to realise more and more the value that input from end-users adds to research. Whether this is patients, the public, people working on the frontline or all of the above, these individuals offer a unique insight into people’s needs and expectations. This helps make research more meaningful and more likely to succeed when applied to the real world.

Traditionally this kind of input has come through involvement practices. Researchers might send out surveys, or hold focus groups and workshops to consult target users and feed their thoughts back into the work.

“What we’re doing is taking involvement to the next level,” says Pip Batey, designer at Helix. “Bringing in human-centred design adds in an additional perspective to patient and public involvement. They both have the same ethos – ensuring that research is carried out with, not for people – but they use different approaches.”

A winding path of discovery

Human-centred design is rooted in a deep understanding of how people live their lives. Thus people, in this case users of the technology, aren’t merely consultants or sounding boards for a project – but are the core around which the research blooms.

“We’ll be illustrating the technology concepts to people in their homes, so that they can input on the direction and form that these innovations take,” says Alice Blencowe, Helix designer. “And we’ll also be doing the opposite: illustrating the lives of people with dementia and their home environments to researchers, helping them to have greater empathy with the people that the technologies are designed to help.”

“It’s a bridge between these two groups of people,” adds Pip. “We’re creating a link, rather than simply telling researchers that this is a person’s perspective, and vice versa.”

The way this works in practice is that designers – in this case, from Helix – will work closely with different users, from people with dementia and their carers to researchers and clinicians. This will inform the team about their unique needs and situations, and give them an understanding of the problem that the research is trying to solve. These insights will then feed into the design of different prototypes, which are then brought back to the users for testing and critiquing.

“It’s an iterative process, not just an output,” Alice says. “We’ll create deliberately provocative designs to provoke reactions from our users, so that people meaningfully engage with the design process,” adds Matt.

A photograph of dementia centre researchers at a workshop at the Helix Centre.
A Helix workshop with researchers in the DRI CRT to map technologies within the programme against the needs of people with dementia. Credit: Pip Batey.

“Dementia brings a unique set of challenges so for technology to really change lives, the experts in dementia – people living with the condition and carers – must be involved in every stage of design and development,” says Dr James Pickett, Head of Research at Alzheimer’s Society. “This ensures the solutions we create are acceptable, practical and will bring real benefits.

“At Alzheimer’s Society we involve the people affected by dementia in every aspect of our work. As a founding funder of the UK DRI we are delighted to see a co-design approach being championed in the Care Research and Technology Centre to develop technologies that will help people with dementia to remain independent for longer.”

The journey towards the unknown

So far, the Helix team has been immersing themselves as much as possible with people with dementia, carers, researchers, clinicians and therapists. Through interviews, workshops and shadowing, the group has been documenting their needs in granular detail, so that they are primed to translate these insights into early prototypes.

The first technology that the team will work on is the clinical monitoring platform, which coalesces and interprets all of the data from the smart home.

“It’s one thing getting all of this data, but it’s knowing what to do with it to make it useful,” says Matt.

“If the system picks up that there could be a problem, we need to make sure that is the case, and then work out the best way to intervene.”

The next phase of their work will be on the interface for the people at home, whether that’s people with dementia, their carers or family members. This interface is the window between these users and the smart home itself, and it could take a number of different forms based on user research, such as touchscreens or voice control.

A smart home device next to a mug on a kitchen counter
Smart home devices could help people with dementia by giving reminders, or combating loneliness. Credit: Matthew Harrison.

“We’re really excited about this part,” Matt says. “It could do things like nudge people to weigh themselves if the system spots that their eating habits have changed, remind them to take their pills, or even ask them how they’re feeling to help address loneliness and isolation.

“There are loads of possibilities.”

That means that right now, it’s impossible to know what the end result of this research will look like. But it’s an exciting unknown that Helix is proud to be part of.

“For me, the Care Research and Technology Centre at Imperial, who work closely with the Helix centre, is the jewel in the crown of the UK DRI,” says Prof Bart De Strooper, UK DRI Director.

“It brings people affected by dementia closer to the basic science that is taking place, and will change the conversation and thinking of the Institute as a whole.”

How wearables could help tackle sepsis

A doctor showing a patient vital signs on a smartphone
Image credit: CW+ and Mile91/Ben Langdon

Our immune system serves to protect our bodies from threats, such as rogue cells that could turn cancerous, or infections that could harm our health. But the immune system can also go wrong, and do more harm than good.

This is what happens in sepsis, or “blood poisoning”, where the immune system goes into overdrive while attempting to clear an invader, such as harmful bacteria, and inadvertently attacks person’s tissues and organs. This life-threatening reaction is estimated to affect close to 150,000 people each year in the UK alone.

World Sepsis Day, on September 13th, seeks to raise awareness of this serious condition, which could take as many as 6 million lives across the globe each year. It’s also an opportunity to celebrate those who have made it their mission to tackle sepsis. We caught up with IGHI researcher, Meera Joshi, who is doing exactly that.

Why is sepsis such a major concern in healthcare?

“Sepsis remains a massive problem, not only in the UK but globally. You only need to pick up a newspaper to spot recurring headlines; it’s a huge killer; as many as 1 in 4 people with sepsis will unfortunately die from the condition. And there’s been evidence to suggest that for every hour delay in diagnosis, the mortality rate goes up by 8%. Data show that if you pick sepsis up earlier, people are much more likely to have better outcomes.”

Why is sepsis tricky to diagnose?

“One of the main problems is that it’s hard to spot. There’s no established molecular marker that can be used to pick up sepsis to date; there’s no single blood test for diagnosis, either. There are markers that are sometimes used, but they lack specificity. Patients also often have vague symptoms that could be attributed to something else, meaning it can go undetected.”

What’s the aim of your research?

“One of the things we’re looking at doing is seeing if novel technology can help identify patients with sepsis sooner. One of the ways that healthcare professionals can check for deterioration of a patient’s condition on hospital wards is to measure their vital signs. Currently, nurses do this on wards around every 4-6 hours, checking things like heart rate, blood pressure, temperature, etc. But we know delays can happen in making these observation rounds. So there could be an opportunity for us to detect sepsis, and deterioration more broadly, quicker.

“We’re looking at new wearable technology, originally developed at the College, which can measure a patient’s vital signs more often, up to every two minutes instead of hours apart. We want to see if this can speed up the detection of clinical deterioration.”

How does the wearable work?

A woman having the wearable sensor attached to her chest.
Image credit: CW+ and Mile91/Ben Langdon

“It’s a lightweight wearable device that attaches to a patient’s chest via electrodes. The sensor, provided by Sensium, records heart rate, respiratory rate and temperature every two minutes. Packets of data are then uploaded to the server before notifications can be sent to desktop computers or handheld devices used by clinical staff.

“We’ve been developing computer algorithms that will generate alerts when this data detects there is a problem. Through these, we’re identifying the best ones for nursing staff, so that the alert can be raised to nurses in real-time, as a patient’s condition is deteriorating.”

Could this sensor have other applications?

“At the moment our focus is on sepsis, but we are looking at any patient deterioration more broadly on hospital wards.

“We’ve just completed a study involving 500 patients at a North West London hospital, where we looked at all sorts of patients with a host of different conditions. Some patients deteriorated for reasons other than sepsis, so we want to see if we can apply this technology and algorithm for other causes.”

How have you involved patients and professionals in this work?

“We’ve been working closely with patients and healthcare professionals throughout all of this research. Out of the 500 patients in our trial so far, we’ve got questionnaire data for around 450 patients, to find out their opinions on the technology and whether they find them acceptable to use. We’ve also done in-depth interviews with both patients and staff, speaking to junior nurses, junior doctors, senior nurses and consultants, among others, who are all shaping our work for the better.”

What stage is your research project at?

“I’m coming towards end of my PhD now, for which I’m hugely grateful to my funders – the NIHR Imperial PSTRC, Royal College of Surgeons and CW+.

“Largely at West Middlesex University Hospital, so far we’ve looked at the reliability of the sensor, its potential for earlier detection, and lot of work with our patient and staff cohort to explore their opinion about device and the use of technology in healthcare.”

What do you hope to achieve with this work?

“I’m hoping we can use wearable technology in the future to help detect sepsis and patient deterioration quicker than is currently possible. And ultimately improve patient outcomes and survival; that’s the next step, to see how this can make a real difference to patients in practice.”

Image credit: CW+ and Mile91/Ben Langdon

Meera Joshi is a Clinical Research Fellow at the Institute of Global Health Innovation’s NIHR Imperial Patient Safety Translational Research Centre

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.

On entrepreneurship and seizing opportunities to make healthcare safer

A photo of Ana talking on stage

By Ana Luisa Neves, co-founder of momoby, GP and IGHI Research Fellow. 

At momoby, we believe every woman should have access to prenatal care, regardless of where she lives. To tackle this challenge, we’re developing a low cost, pocket-sized device that tests for diseases that could harm pregnancy, using a single drop of blood. (more…)