PROCare4Life Spring 2022 Newsletter

Cláudia Louro PROCare4Life project manager looks forward to the next phase!

Another stage of our real-life pilots is about to be achieved! Pilot 2 is about to close and it has been a challenge. During this period, a new wave of COVID-19 has swept through Europe with unprecedented numbers of people infected and the consequent impact on the organisations involved including hospitals, clinics and associations.

Even through this the six pilot sites in Pilot 2: Spitalul Universitar de Urgenta Bucuresti and University of Medicine and Pharmacy Bucharest, Association Parkinson Madrid in Madrid, Casa di Cura Privata del Policlinico in Milan, Campus Neurológico Sénior in Lisbon and Wohlfahrtswerk für Baden-Württemberg in Stuttgart succeeded in recruiting users and testing the 2nd prototype technology of PROCare4life.

From the preliminary results of Pilot 2 areas and functionalities to be improved were identified. Based on that, the consortium is optimising the technological solution to meet users' needs and expectations, taking into account the characteristics of the system's architecture.

In Pilot 3 we will validate the optimised version of the PROCare4Life system and study its applicability to other chronic diseases, in addition to neurodegenerative diseases.

Stay tuned! Click below for further reading on the impressive results of the PROCare4life project so far.

In Chapter 1 we met Maria! Maria is a 67-year-old retired teacher who lives alone, is very independent and connected to her family, she has recently been showing signs of mild cognitive impairment and memory loss. In Chapter 2 we follow Maria and her informal caregivers as she begins to use the PROCare4Life app as advised by health and care professionals.

The PROCare4Life system is recommended to Maria by her GP who refers her to a Neurologist Dr. Sarah who talks through the solution with her.

Dr. Sarah explains that PROCare4Life is a digital app that aims to improve the quality of life of older people like her. It does this using an easy to use personalised care plan, and access to health and social care professionals. Through wearable sensors such as watches and smart phones, PROCare4Life passively monitors Maria’s health. It actively monitors and registers if her medication is up-to-date, and reminds her to take her meds. It also helps with her general health by asking her to complete health questionnaires.

Sensors in the home collect data and pass it to an AI system. This extracts relevant information which is used to personalize the care provided to the participant, and to support the care giver.
Dr Sarah tells Maria that it’s also helpful for her doctors, helping them make better informed decisions regarding Maria’s condition.

The Communication and Dissemination lead The International Foundation for Integrated Care (IFIC) made the animation using the software Animaker. Together with the PROCare4Life Consortium partners they co-designed and developed the script, created the storyboard, developed the characters and recorded the VoiceOver to create these engaging animations. The International Foundation for Integrated Care hosts The International Conference on Integrated Care (ICIC) which is taking place in Odense in Denmark in May 2022!

Read the Interview with PROCare4Life patient E.G.V by Parkinson's Madrid

11th April is World Parkinson's Day, what is it like to live with this disease?
Obviously it depends on the degree of affectation, the way you accept it and the people around you.

In all cases, it is hard because it is one of the many diseases that have no cure and we don't know how and when it will develop and get worse.

In a way it "forces" you to do therapies, which other people do for entertainment, which leads to spending this time when you could use it for other things. Socially, it still causes amazement when you say you have Parkinson's disease.

Which symptoms do you consider to affect your life the most?
Pessimism, memory disturbances or loss, muscle aches, stiffness in the limbs, sleep disturbances, difficulty in performing some manual tasks due to tremor, writing, reading, and difficulty in expressing any comments in person or over the phone, difficulty in speech..

Have your preferences changed as a result of the disease?
Yes, they have. For example, I feel the need to sleep more even if I don't sleep afterwards. Now I feel the need to eat sweets more frequently but I reject of spicy food.. Above all, I want to live life a little "faster" and more intensely than before..

Do you think technology could help you to improve your quality of life?
Yes. Well-developed technology that is easy to understand, uncomplicated to install, and with results that can be communicated to the patient's environment, helps for sure.

How long do you know PROCare4Life system for?
On 4 April 2021 I became a member of Asociación Parkinson Madrid and they showed me the system that was being used at that time in physiotherapy sessions.

I have participated once with PROCare4Life for a week and I am currently doing the same for a longer period of time at home.

And what do you think about it so far?
It is positive. I am looking forward to the further development especially the interaction between patient, health professional and caregiver, both on the street and at home in case of emergency. I don't know what data and how it is stored in physiotherapy sessions. I look forward to the potential it seems to have.

Do you think it is useful? Why?
Yes it is useful now and may be more useful in the future when it is fully developed.
Knowing certain factors such as sleep, heartbeat, calories, and many others that can be known helps us, our caregiver and the professional, to see the situation and be able to make a decision if necessary.

How you see yourself using the system in your real life?
Very well.

Do you want to continue using it / would you recommend it?
Yes, I want to continue using it, and yes I would recommend it!

March celebrated World Sleep Day!

World Sleep Day is a global awareness act that celebrates sleep and aims to help those with serious sleep problems. Celebrated on the Friday before Spring Vernal Equinox of each year, this holiday has an annual 155 events held across the world and is participated by over 70 countries. The slogan for 2022 is Quality Sleep, Sound Mind, Happy World. Sleep is a foundational pillar of health, and the quality of your sleep can impact not just your physical energy in the morning but your mental and emotional health, too. WSD highlights the power of quality sleep for both physical and mental health in adults and children alike. Conversely, lack of sleep or poor sleep quality is known to have a significant negative impact on health — affecting attention, memory, learning, obesity, diabetes, weakened immune systems and other health problems. The science is clear: Sound sleep is a vital component of health. To help improve sleep worldwide, World Sleep Society has compiled 10 Tips for Better Sleep.

Project Partners and Lisbon Pilot site CNS – Campus Neurológico was created to provide an integrative and multidisciplinary approach to patients and caregivers within its own facilities in Torres Vedras and Lisbon.

The CNS programs are focused on the treatment of neurological diseases, primarily Parkinson’s disease and other movement disorders, as well as Alzheimer’s disease and other dementias, welcoming both Portuguese and International patients. Patients are treated with a personalized and multidisciplinary approach. Neurology, Psychiatry, Internal Medicine, Nursing, Physiotherapy, Occupational Therapy, Speech Therapy, Psychology, and Nutrition specialists are part of the multidisciplinary team.

CNS is developing a program intended for insomnia. The program exists in an inpatient and outpatient format. Patients are assessed at the beginning and at the end of the program by a multidisciplinary team composed of neurologists, nurses, and psychologists. They also perform Video polysomnography to better characterise the sleep problems.The intervention includes sessions of Cognitive Behavioural Therapy (CBT), Exercise and relaxation sessions. At the end of the program, a personalized program for home is offered to each person.

The team responsible for the program development is composed by Professor Joaquim Ferreira, Neurologist and Pharmacologist, Dr. Ana Rita Peralta, Neurologist specialising in sleep problems, Dr. Cristiana Silva, Neurologist specialising in sleep problems, Nurse Tiago Pama Reis, Dr. Filomena Sousa, Psychologist and PT. Daniela Guerreiro.

Since its creation, CNS further aims to conciliate its clinical activity of excellence with the conduction of clinical research projects and the training of both health professionals and general public.

Check out some of CNS videos to raise awareness of the benefits of healthy sleep and to increase awareness of their consultations and programs aimed at healthy sleep.

Privacy and Ethical by Design

Data Privacy Day was marked by Project Partners Stellar with Ricardo Morte, the Privacy and Ethics researcher and chair for the Ethics and Privacy Committee at the PROCare4life project wrote this in relation to their work.

It is an educational initiative originally focused on raising awareness among both businesses and personal users about the importance of protecting the privacy of personal information online, particularly in the context of social networking. This educational focus has grown after some years to include other fields, like the health and research ones.

Here we should remember that the main objective of PROCare4Life pilots and the future use cases is to deploy the PROCare4Life platform and, in the pilots’ case, verify its technical use and acceptance in order to achieve a later business implementation. In order to achieve this objective, it is clear that the project needs a big amount of ICT, so that Privacy is also a key issue.

Our main target is to achieve that the PROCare4Life project is designed to achieve the highest levels of Data Protection and Ethics. For this reason, we help to take care of this issue from the very beginning of the project because in the digital world the principle that says “building is easier than re-building or reforming” works exactly as in the analogical world.The main , and oft forgotten, tool to achieve the mentioned levels is to work with as less data as possible, which means applying the data minimisation principle. One way to apply this principle is to work with pseudonymized or anonymized data whenever possible, and this is exactly how our project works. We try to work with as less personal data as possible and when we need to work with personal data whenever possible we anonymize them