After the summer season our blog on patient experience returns with a very interesting case on patient co-creation. Two nurses and an IT engineer joined to create together with renal patients an app that improves adherence to kidney treatments. During this conversation they tell us about how it was to work with patients in the app’s design and which improvements they have achieved applying user centred methodologies.

Before starting we are first to get acquainted with the Team of Diálisis 24H. It is integrated by Mercedes Muñoz Becerra, Ruth Molina Fullerat and Manuel Escobar Gómez. The team leaves and works in nurse at the beautiful southern city of Granada, famous not only for the Moorish Alhambra palace but nowadays for its innovation campus in e-health. Mercedes has worked as a nurse she has worked in several Granada hospitals at intensive care, anaesthesia, haemodialysis and other services. Since 2008 she serves in nephrology. “What I enjoy most about my job” –says Mercedes- is the work with the chronically ill, since it allows the creation of special ties and this is very fulfilling. The years of experience and the personal maturation have brought new, different values to my work. I am convinced that there is a lot to do and that I can contribute to it.”

Ruth is also a nurse with an in depth experience in nephrology and dialysis at several Spanish hospitals until she ended up also in Granada. Restless as she is, she is committed to continuous improvement, to the care of those in need, to patient communication and to discover each day new stimuli for learning. She recons to be “everyday more convinced of the importance of active listening and communication to capture real needs and develop solutions to them.”

Finally, Manuel is an IT engineer. He defines himself as “an engineer of dreams and a born entrepreneur”. After 15 working in the software industry he focused on ehealth with his companies Biocapax and Healthybluebits.

What is this app about and how does it work?
Diálisis 24H is meant to be a reference and support for kidney patients in an innovative way. It is useful when managing their care and improving adherence to treatment. The app pretends to educate patients in an attractive way: it does not only aim to inform about self-care, but to make them conscious about it. It motivates thus patients to manage their own health and providing them about a broader control on their welfare. The app is free and can be downloaded at IOS and Android stores.

Which functionalities does the app include?
First it has a hydric calculator. It can store the overall hydric intake of all solid and liquid food taken during the day and calculate thus the daily hydric balance. The hydric balance is a key stone of renal self-care and, at the same time, the point with less adherence. Most people are not aware of the influence of specific foods and liquids in there balance.

They have also a food catalogue with a great number of files of foodstuff and cooked dishes that informs about the amounts of potassium, sodium and water they contain. We want our dialysis patients to be able to eat all kinds of food but in a healthy manner. It is not about prohibiting, it is about giving the tools to allow patients to eat what they like taking into account the quantity and the portions. We also want to reduce their anxiety and fear personalizing portions.

Interesting is the health game. We innovated by using gamification to empower renal patients. There is a wide scientific evidence that suggests that playing improves learning. Our patients confirm it: they learn quicker by playing, as we witnessed with the prototypes we developed before the app’s release. The quiz game we created allows the user to play alone or with other app users solving the challenges of the game. 

The digital pillbox reminds with alarms and motivational phrases the patients to take their medication.

Healthcare advices help patients and relatives with information on nutrition, lifestyles, dialysis, care on vascular accesses, vaccines and many other issues. The information is updated regularly according to the latest bibliography.

Last but not least, the historical dialysis records are key elements for treatment success. It allows seeing in a visual manner the evolution of dialysis control, the estimated weight (calculated from dry weight and the hydric calculator results) as well as the real weight. With this information patients get a powerful tool for self-control and to share with healthcare professionals. 

Why did you involve patients in the design?
Develop an application for patients without patients would make no sense. Patients, caregivers and relatives are the main experts on the illness they suffer. For this reason they are perfectly qualified to participated actively in the development and content of apps and add more value.

Our first challenge and greatest wish was to reach the largest number of dialysis patients. And the second challenge was avoiding complexity and at the same time providing everything needed.

What advantages did you find in working with patients?
First a reduction of uncertainty about the app’s acceptance among the target population. Also diminishing interface problems. We saw as an outcome that we needed to release less updates than expected. This would have not been possible without patient’s work and know how.

Has there been any disadvantage?
We can see it as a disadvantage; but we prefer to call it opportunity: we had to learn about many different fields of software development. Manuel had experience, of course. To this learning time we have to add patient recruiting, patient feedback, etc.

What involvement methodologies did you apply?
We worked with design thinking, so that we added Mercedes’ and Ruth’s experience working many years with renal patients to the experience of the patients themselves. On that grounding we applied Manuel’s IT and app development knowledge. We involved patients, that did not participate in the first phase, in the testing of several prototypes so that with their feedback we finally launched Diálisis 24H.

And last, what does the app owe to patients?
During the app’s development process we could adapt colours, shapes and features for the interface. Also wording and vocabulary come from patients insights, which was key in order to allow the widest possible access.

Patients have evolved from a passive, suffering person to active and creative individuals that want to know more about their diseases and get involved in the solution. They felt listened, valued and identified themselves with the project, achieving thus an extra motivation to manage their health.