Across Europe, neurodegenerative illnesses are dramatically altering the lives of many people, and posing huge challenges to their carers and to health and social care structures.
How can we combine rapidly advancing modern technology with our knowledge of neuroscience and integrated care to improve the lives of people with these conditions and reduce the burden on the people and systems around them?
This was the question the PROCare4Life consortium set out to tackle in 2019.
Supported by Horizon 2020 funding, PROCare4Life brought together 14 organisations from 6 countries across Europe to collaborate, using the latest technology and interdisciplinary expertise to build a platform that can practically address neurodegenerative conditions while adding to the body of knowledge in this field.
Using a co-design process, the PROCare4Life team has created a technological platform whose TRL is 7, which was tested in six large scale pilot sites around Europe, where end-users were able to guide the modular system as it was developed, ensuring it met their needs. The future expected users of the platform are elderly citizens living with Parkinson’s, Alzheimer’s (or similar dementia), their carers and healthcare professionals. Additionally, the PROCare4Life system has been tested to also support elderly people living with comorbidities.
Objectives of PROCare4Life:
Enable communication between all stakeholders, improve time management for social and health professionals and help to achieve an efficient, flexible and adaptable solution.
Facilitate and improve care management for older adults living with neurodegenerative and other chronic conditions.
An interactive, personalised model, developed to meet users' needs, to adopt healthy habits, maintain a daily routine and follow advice from care teams.
Enabling communication across sectors and disciplines to improve time and cost-efficiency, and communication with and across users to strengthen support.
Ricardo Matias, Chief Innovation Officer of Kinetikos Health and coordinator of the project, explained how the team was able to build a platform that can analyse data to provide unique feedback for users to help manage their conditions, and increase their quality of life and autonomy.
“We have a sensing ecosystem that, as passively as possible, tries to collect information from users during their living activities. This information is all streamed into a platform that receives data, distils data through multiple layers of artificial intelligence and provides tailored, specific recommendations."
“So, the model was can we track these users and understand what is going on in their daily activities, make recommendations out of the data, but also track the severity of their condition and adapt the recommendations that are being pushed.”
Having worked on the project for the last few years, he said the goal is now to make sure PROCare4Life has a continued impact after the project has ended.
“We have learned a lot. We are committed to make the project available for others who want to corroborate our results or further research and advance on our results. This is truly important to make sure the project does not end with the life of the funding.”
The PROCare4Life technological solution uses a combination of different sensors to track data, which is then analysed to provide actionable information for their care team and tailored recommendations to the end users.
The market is already full of readily available devices that allow users to track data in different ways, and the PROCare4Life team saw the potential in what that data could do if you gathered and analysed it in the right way.
Jorge Alfonso from Universidad Politécnica Madrid (UPM), PROCare4Life technical coordinator, explained that the technical team’s plan for PROCare4Life was to keep the focus on data and develop a system that was useable, adaptable, and accessible.
“We have the Fitbit, we have the smartphone, we have the binary sensor, we have the camera. Those collect different types of information,”
He explained that PROCare4Life can take this data and analyse it in a way that could predict the future of a user’s condition and provide advice that could prevent it.
“We analyse a certain amount of time of that data and score it: cognitive skills score, medication compliance score, sleep score, etc. Then we predict how these stats would evolve over time and then compare them with the actual scores”.
“We would compare them and then we would think, ‘okay, things went as we predicted’ or ‘something strange happened, we should be doing something, we should promote some activities, we should tell the carer that something is amiss.'”
Through the pilot process, the team were able to create an initial version of the program and then test it against real user experience, using their feedback to improve it.
“The constant feedback was ‘this is too complicated to install, this is too complex to use, this is too complex to operate’.
“It is necessary to think very carefully about what is the target group. Think about their limitations. Think about what we can do on the technical side to minimise the issues they may encounter.”
As the project continued, the technical and clinical teams were in constant contact to understand what was working, what wasn’t working, and what could be added to increase functionally.
Improvements over the course of the project including emphasising passive monitoring more - like the Fitbit - to limit the demand on the user to manually input anything. To resolve tech issues, the team also focused more on cloud services, allowing problems to be solved centrally, rather than having to deal with individual devices or local technology.
The co-design process used by PROCare4Life allowed people living with neurodegenerative conditions and their care teams from five different countries to contribute directly to the development of the solution.
PROCare4Life had six pilot sites in five countries:
Association Parkinson Madrid (APM)
Casa di Cura Privata del Policlinico (CCPP)
Wohlfahrtswerk für Baden-Württemberg (WBW)
Campus Neurológico Sénior (CNS)
University of Medicine and Pharmacy (UMF)
Spitalul Universitar de Urgenta Bucuresti (UHB)
The pilots were held in three stages. The first pilot had 400 users who tested the feasibility of an initial design of the solution and provided their feedback. The second pilot tested an updated version of the solution and involved more healthcare professionals. It also allowed the team to better understand the metrics that were being tracked. The final pilot was a clinical study to test the final version of the solution and its impact on people’s quality of life, in addition to a large-scale survey of patients and healthcare professionals.
“It was important for us to experience the PROCare4Life platform in all the different scenarios that the user experiences in their day-to-day life: the rehabilitation centres with a multidisciplinary team, the day-care centre with professionals that supervise the patients in their daily activities, and especially the home scenario where patients live their everyday lives.”
Things are not always predictable when theory meets practice, and the PROCare4Life team were agile and flexible and adapted the needs of the pilot participants and the reality of their lives. Elda explained that the participants had a good level of satisfaction with the solution, which improved as time went on. There was also clear evidence that the solution had a positive impact on the quality of life of users, compared to the control group.
Users valued aspects of the solution like tailored recommendations, being able to use new technology, and the idea of remote monitoring. The suggested more visual feedback like videos and more recommendations would improve the solution in the future.
Users also raised issues with the app, like the generalised content which wasn’t adapted to them, or content being repetitive, as well as various tech issues.
“We can say that patients and caregivers wanted to be actively involved and enjoyed being involved in the project,”
"We can say from the good compliance and low dropout rate that those results were positive. It’s always important to find a balance between users of low digital skills, but they want to be actively involved. So, a balance of interactions and passive monitoring, which is not invasive."
“We also need to look at increasing digital literacy and reaching a more personalised solution.”
“This is an integrated care platform that allows data sharing, allows information sharing, allows detailed monitoring of the person. It is person based and has been continually based on the suggestions of the participants - more than 1,500 people who have given feedback.”
“Sometimes it was challenging, and it was difficult, but, of course, it should be made for the people who are going to use it. We have tried to be very honest about the things that have gone well or bad. We have done internal research to reflect on that. We try to make it constructive, identifying things that might be useful to researchers or anyone taking over PROCare4Life and taking it to the market.”
She identified the primary outputs from the project as the integrated PROCare4Life system, as well as the sub-products within that system like the web platform, smartphone app, and game platform. Each of these has the potential to be implemented by care providers allowing people with neurodegenerative conditions to manage their health and live better lives.
In addition, PROCare4Life has had a research impact too, a significant number of publications in scientific journals and presentations at conferences.
Pilar said that anyone working on a similar project could learn a lot from PROCare4Life, especially in how to deal with older people.
“We needed to make sure they were comfortable with the solution and they were able to use it. The research needed to be adapted to their needs. You need to make sure the people you are involving are listened to. You need to take seriously the co-design part."
"Don’t underestimate the need for people to be trained - the digital divide is still there. This needs to be planned from the very beginning."
“Try to make the system as passive and minimalist as possible. If you make it too complex, you create frustration. The system should be easy enough for them to feel able and confident while using it.”
She said that having a multidisciplinary teams is an incredible resource, but requires a lot of work to make sure everyone is on the same page.
“We had to work hard to understand each other. We had to make a big effort to pass from individual methodologies to multidisciplinary approaches. The first year is difficult, but then something magical happens and you understand the clinicians and you understand the technical partners and you understand the social scientists and the communications partners.”
While the PROCare4Life project is now over, it has created a well-realised technology platform and a body of evidence that has expanded the understanding of technology as a care tool.
There is huge potential for this platform to be picked up by care providers who are interested in improving the quality of life of people with neurodegenerative conditions, and for those developing systems to use the learnings of PROCare4Life to improve their work.
Each of our partners is leaving the project with a better understanding of how a platform like this can leverage modern technology to deliver better integrated care and are looking at implementing learnings from the project in many different ways.
If you would like to learn more about the project or discuss how you might use it in your work, please contact us.