WHO and EU-funded Health and Care Cluster collaborating on webinar series

Last year (2020), the World Health Organization’s (WHO) Global Cooperation on Assistive Technology (GATE) launched the Digital and Assistive Technologies for Ageing (DATA) initiative to encourage the global development, synthesis, and use of affordable, quality, digital and assistive technologies to cope with the challenges brought on by ageing.

To explore the wealth of research carried out internationally on digital and assistive technologies for ageing, WHO DATA, in collaboration with the EU’s Health & Care cluster, organised a first webinar on 21 May 2021. The online event brought together ten large-scale pilot projects funded by the European Commission, to show how digital and assistive technologies can be used together to enhance smart and healthy ageing in communities across diverse European contexts.

Researchers and digital experts shared their experience in long term co-design in ageing and large-scale digital health projects. TeNDER, for example, provided input based on our experience developing and implementing meaningful collaboration processes.

Throughout the webinar, speakers underscored the importance of the human component in designing, deploying, and assessing assistive technologies and digital solutions. The presentations shared the vision of research and innovation in the field of health and care and highlighted practical steps to obtain real commitment from decision-makers in the process.

Recent examples of pilots amidst COVID-led restrictions showed the relevance of interoperable technologies to provide tailored and timely solutions to users. Informed discussions were held on technical choices around key performance indicators, service sustainability, services’ innovation, users’ personas and piloting methodologies.

WHO work on digital and assistive technologies

The WHO launched the Digital and Assistive Technologies for Ageing (DATA) to encourage the development of and promote access to assistive technologies for people with impairment or decline in physical or mental capacity, with a particular focus on older people.

Within WHO, DATA brings together perspectives from a number of different departments; including Ageing and Life Course, Digital Health and Innovation, Health Systems and Service Provision, and Health Products, and Policy and Standards.

Working with service providers and users, industry, and civil society, DATA will span boundaries to produce more integrated and cohesive services for older people. If you are interested in exchanging information, sharing knowledge on latest research and contribute to discussion around  enabling environment on digital and emerging assistive technologies for ageing we invite you to join the DATA community. The initiative builds on the successful WHO Global Cooperation on Assistive Technology (GATE) and healthy ageing initiatives, and similarly will be applicable low-income, middle-income, and high-income contexts.

EU work on digital and assistive technologies

The Health & Care Cluster gathers ten Large-Scale Pilot projects financed by the European Programme for Research and Innovation, Horizon 2020. The cluster counts 5 working groups focused on Dissemination, Architecture, Use Cases, KPIs (Key Performance Indicators) and GDPR (General Data Protection Regulation). The Health & Care Cluster projects are framed within the OPEN DEI Innovation Action aligning reference architectures, open platforms and large-scale pilots in Digitising European Industry.

Explore the large-scale pilot projects in the Health & Care Cluster:

Tender: affecTive basEd iNtegrateD carE for betteR Quality of Life

Activage: Internet of Things for ageing well

Adlife: integrated personalised care for advanced chronic patients

Faith: a federated artificial intelligence solution for monitoring mental health status after cancer treatment

GateKeeper: Smart data driven solutions for personalized early risk detection and intervention

InteropEHRate: HER in people’s hand across Europe

Pharaon:  pilots for active and healthy ageing

Shapes: Smart & Healthy Ageing through People Engaging in Supportive Systems

Smartbear: smart big data platform to offer evidence-based personalised support for healthy and independent living at home

Smart4Health: Citizen-centred EU-HER exchange for personalized health

The first wave of pilots: Views from the ground

The first wave of TeNDER pilots will end soon. During the next few months, our user, technical, and research partners will consolidate the data gathered from the five different pilot sites. The results will be analysed and adjustments will be made in time for this fall (2021) when the second wave will commence. They will also consult participants to ensure that the next iteration integrates their feedback, as well as to capture improvements in quality of life.

Thanks to careful planning, user consultations, as well as the timely implementation of contingency plans to mitigate the impact of COVID-19 restrictions, partners were able to build trust in the system, ensure it is fit to address the needs of users, and conduct the pilots safely.

To date, 125 participants have been recruited across the Madrid region (Asociación Parkinson Madrid and Servicio Madrileño de Salud), Bad Aibling (Schön Klinik), Ljubljana (Spominčica – Alzheimer Slovenija), and Rome (University of Rome – Tor Vergata). Participants include patients with cardiovascular diseases (CVDs), dementia, and Parkinson’s disease (PD), as well as caregivers, and health professionals. By the end of the project, we will have reached an estimated 1,500 users. We will also have tested the full range of the TeNDER technological toolbox and the system’s services.

Our ultimate aim is to empower users, allowing patients to track and manage their health, social environment, treatment, and medical appointments for as long as they can. For those whose conditions have limited their day-to-day functions, we hope that the TeNDER system will help extend their independence, support their daily activities with necessary reminders and suggestions, and keep them safe by monitoring mental and physical health markers.

TeNDER’s assistive system is designed to provide support, not replace people’s personal connections. While a key goal is to ease the burden of care placed on those who surround patients, this is so that all users can have more time to nourish their relationships, engage in activities that are mentally and physically beneficial, and markedly improve people’s quality of life.

Testing the technological toolbox

During the first wave, patients (with CVDs, dementia, or PD) at the Schön Klinik – Bad Aibling (SKBA) hospital and its Alzheimer’s therapy center, have been testing the Fitbit smartwatches and the Withings Sleep-Analyser.  

Researcher testing the TeNDER system at Schön Klinik

Researchers have been able to visualise each patient’s heart rate, steps, and sleep quality – including the detection of abnormal sleep patterns – using the Fitbit and Withings apps on smartphones, which will soon also be available on the TeNDER-App.

For its part, Asociación Parkinson Madrid (APM) has naturally focused on patients with PD with plans to include caregivers and health professionals. APM is conducting their pilots in the rehabilitation room scenario, involving the use of the Kinect camera and smartwatches. Pending the further relaxation of COVID-19 restrictions in Madrid, APM may be able to test other devices in home environments.

In daily therapy sessions, some patients wear smartwatches and perform routine exercises that the Kinect camera captures and analyses. 

Exercise session at Asociación Parkinson Madrid

Also in Madrid, the Servicio Madrileño de Salud (SERMAS) has been testing the smartphone application and recording basic vitals. It has been working with different types of patients, caregivers, and primary care physicians and nurses. Uniquely, SERMAS is working closely with engineers at the Polytechnic University of Madrid (UPM) to train the algorithms and optimise our data collection.

In Rome, our partners at the University of Rome – Tor Vergata (UNITOV) are recording basic vitals and testing some of TeNDER’s smartphone-integrated services together with patients with dementia and PD, as well as their caregivers and doctors.

Similar to APM in Madrid, UNITOV is waiting for further easing of COVID-19 restrictions to install and test further devices in home environments. In addition to wearables and smartphones, these devices will also include sleep sensors, mini-PCs, and Kinect cameras

RGB-depth sensor

Finally, in Ljubljana, our partners at Spominčica – Alzheimer Slovenija (SPO) have been working with patients with dementia, their family members, and caregivers in their home environments.

Users are testing the smartwatch together with localisation sensors, sleep-analysers, and microphones that can capture general emotional reports in the environment, which are locally processed in the TeNDER system.

SPO is also conducting detailed consultations with professionals and patients, and is integrating their feedback into the system reports. These reports not only feed into the data that trains the algorithms, but they also provide invaluable input that helps us improve the system and its interfaces. User experiences, opinions, and suggestions are key to making TeNDER services person-centered and fit to help address user needs.

Initial reception

Throughout the first wave, patients, caregivers, and health and social care professionals have shown great interest in several services. SKBA reports that the latter group has found the sleep analyser especially helpful, particularly in detecting signs of unknown sleep apnoea.

When using the smartwatch, patients have reported that they are more motivated to stay physically active, proudly referring to the number of steps they are taking every day.

We have also seen the benefits of the work user partners put into meaningfully involving users from the start of the project. SERMAS, for example, has held training sessions with professionals in different primary care centres in Madrid. While SPO held several focus group meetings early on in the pre-piloting phase. These efforts have given us great insight into people’s perceptions regarding assistive technology, as well as user expectations.

The collaboration process, together with TeNDER’s rigorous adherence to data and privacy protection guidelines, has helped build trust amongst current and potential users. Thanks to this, patients who have participated in the projects have expressed general satisfaction and great interest in what comes next as the system is improved and its benefits extended.

At TeNDER we will continue to strive to preserve the sentiment recently expressed by a participant in Madrid: “I am very proud to be able to participate in something that will be the future.”

TeNDER and the Quality of Life of people with chronic diseases

Quality of Life (QoL) is an important concept widely used in medicine, sociology, and psychology. The World Health Organization (WHO) defines QoL as an “individual’s perception of his or her position in life in the context of the culture and value system where they live, and in relation to their goals, expectations, standards, and concerns’’[1]. When applied in the context of healthcare, the concept of QoL refers mainly to health-related QoL (HR QoL), the component associated with health status, health care, and health-related social support.

HR QoL is a multidimensional concept, it covers physical aspects (for instance, physical symptoms and functions), mental factors (for instance, mental symptoms, psychological well-being, emotional status, and cognitive functioning), social components (like social well-being), as well as other elements (for instance, global judgments of health, satisfaction with care, health, and treatment and outcomes).

Some of these factors may influence the HR QoL of older people with chronic diseases. In elderly patients, QoL is mainly influenced by physical independence, physical and mental health, and by physical and behavioral symptoms; moreover, the level of autonomy in performing daily activities has a fundamental effect on the HR QoL of these patients.

Many patients with chronic diseases depend on care from their caregivers and relatives: the progression of the disease may increase the needs of the patients, which in turn may affect the HRQoL of caregivers and relatives.

TeNDER will create an integrated care ecosystem using micro-tools to assist people with Alzheimer’s, Parkinson’s, and cardiovascular diseases, and – where present – comorbidities. These micro-tools will be able to recognise the status of a person and thus adapt the system to the person’s needs via a multi-sensorial system (even in the most severe cases), and match with clinical and clerical patient information, while preserving privacy, monitoring the ethical principles, providing data protection and security.  By combining user-friendly technologies and substantial research experience, our project aims to help improve the HRQoL of patients and those who surround them.

 

References

[1] The WHOQOL Group. (1995). The World Health Organization Quality of Life Assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41(10), 1403–1409.

 

 

 

TeNDER successfully completes pre-piloting phase

After careful preparations, TeNDER is ready for 2021 and the first wave of pilots. During the pre-piloting phase, consortium partners laid out the legal and ethical framework of the project, defined the technical architecture of the services TeNDER will provide, consolidated the system for gathering data and analysing results, and consulted future users, among other things.  

In addition, we developed use case scenarios, stories that reflect real-life situations and help us conceptualise how users will interact with our tools. To complement this exercise – and despite the difficulties the COVID-19 pandemic posed – we safely reached patients, carers, and professionals to reflect on the technology and TeNDER tools.

TeNDER partners in Germany, Italy, Slovenia, and Spain conducted nearly 200 surveys and 61 interviews with patients, caregivers, and medical and social professionals. The results gave us invaluable insight into the ways the TeNDER system will be used on the ground:

“I would like to have more autonomy. And that when I communicate with people, they understand
all that I want to say.” (patient with Parkinson’s Disease)

“Some days, when I returned from work, I found her on the floor and she couldn’t explain what had happened. It would be very useful to know what happens [while I’m gone] and to be alerted if she has fallen.”
(caregiver of a patient with dementia)

“It would be nice if you could also encourage patients to exercise regularly, and monitor their vital signs, too. As a physician, I would benefit from reading the reports before seeing the patient.” (neurologist)

The importance of the pre-piloting phase

During this preparation phase, we not only identified what patients, caregivers, and other participants need, but we also worked with TeNDER’s technical partners to ensure their input is integrated into the system design. Furthermore, we translated complex procedures into less technical terms.

Careful preparation helps projects like TeNDER stick to timelines, reduce failure rates, and above all, achieve societal impact for the benefit of patients and those who surround them.

What comes next?

TeNDER pilots will take place in three waves all the way through to end of 2022. Results, publications, updates, and analyses will be made available on our website and other platforms throughout the duration of the project.

Stay tuned for more updates by following us on Twitter and LinkedIn, and by subscribing to our bi-annual newsletter! 

Outcome of the Sustainable Places Conference 2020

On 30 October, several EU-funded initiatives participated in an online workshop organised within the general framework of the Sustainable Places Conference 2020. The workshop, titled “Sustainable Housing Supporting Health and Wellbeing,” centred on the benefits of and the ways to create living spaces fit for all walks of life.

Among a broad range of innovative projects and therefore participants with various backgrounds, Annelore Hermann (Universidad Politécnica de Madrid) presented TeNDER and how it fosters independent living, particularly in old age.

Each project is developing tools, policy recommendations, and services that contribute to sustainable housing and other living environments. This entails, for example, creating age-friendly home certification models (Homes4Life), as well as TeNDER’s own integrated care system.

Other initiatives are focusing on policy and strengthening the links between various stakeholder groups that have a strong impact on healthy ageing and wellbeing (SHAFE). Linked to these policy goals is the work of researchers and other stakeholders seeking to support the creation of age-friendly communities, integrated health, etc. (NET4AGE-FRIENDLY). Meanwhile, AGE’IN and SmartWork aim to improve access to living and working environments that help extend the independence of ageing populations.

The ongoing pandemic has put a spotlight on the needs of people and communities over the course of time. What all the projects and the people behind them have in common, is that they strive for more safety, more independence, more sustainability, and above all: less isolation.

Knowledge exchange and collaboration

One way to facilitate knowledge exchange, which may benefit researchers and users beyond project years, is to collaborate with projects and organisations that address similar societal challenges.

While TeNDER’s integrated care model focuses on people affected by Alzheimer’s, Parkinson’s, and cardiovascular diseases, the results of the project and its assistive technology system may contribute to the development of alternatives for other types of patients.

Fundación Querer uses the benefits of ICT-based technology to support children and adolescents affected by neurological disorders. Founded in 2016, the organisation offers educational resources and conducts research and awareness-raising campaigns.

El cole de Celia y Pepe

One of Fundación Querer’s core educational projects is El cole de Celia y Pepe, a school that supports students with severe language and communication difficulties that stem from neurological disorders. The programme runs for 11 months in Madrid. It offers individualised attention, involves parents, and aims to develop greater autonomy in students.

Recently, Fundación Querer partnered with the Grammar & Cognition lab, led by Dr. Wolfram Hinzen (Pompeu Fabra University), to research language disorders. The study will map language disorders in relation to cognition.  

Their method combines the (1) elaboration of a comprehensive behavioural profile; and (2) a Magnetic Resonance Imaging (MRI) component. The aim is to “profile language behaviorally across the different populations available in this school and study [the] connections and disconnections between linguistic and non-linguistic cognitive profiles that can feed into new educational approaches and tests.”

Adapting to support students 

During the COVID-19 pandemic, El cole de Celia y Pepe has not only continued to support its students, but it has also created online access to resources for children with special needs across the world.

Both TeNDER and Fundación Querer demonstrate how ICT-based tools and digital technologies, when done right, can help all walks of life.

Taking it one step further – Empowering people with technology-based systems

We’ve all been there, when feeling sick the highest aim is to get well again, preferably as soon as possible. However, this isn’t something that is within reach for everybody, especially not for people with chronic diseases, like Alzheimer’s, Parkinson’s, or cardiovascular diseases. Due to the progressive development of such conditions, returning to a status quo is unfortunately out of reach.

Therefore, the focus needs to shift to slowing down the progression of a disease and making the best out of the situation in such a way that enables people to be as healthy as possible, and in turn, live the best life possible.

This is in accordance with the concept of Health promotion, which was defined by the World Health Organization (WHO) in 1986 in the first conference of Health Promotion in Ottawa. Thus, health promotion is “the process of enabling people to increase control over, and to improve, their health” (World Health Organization, 1986). Concrete strategies were published afterwards in the Ottawa Charter for Health Promotion and now serve as the foundation for the “Health for All” strategy of the WHO.

One of the basic tenets of health promotion is to enable people “to achieve their fullest health potential,” in other words, to put people in a position where they can control and can stand up for their own health. This way, people are not only passive recipients of health care, rather, they can advocate for themselves and, in a wider sense, make the best out of the situation. Having a “supportive environment, access to information, life skills and opportunities for making healthy choices,” were identified as ways to reach this goal.

Similarly, the concept of empowerment builds on the concept of enabling. According to the WHO, empowerment is “a process through which people gain greater control over decisions and actions affecting their health” (World Health Organization. Division of Health Promotion & Communication, 1998). Conditions should allow people directly to influence their health through actions – individually and as a group.

In the age of digitalisation, more and more technologies are being developed to support people in their daily lives. Ranging from simple communication tools to activity trackers or sophisticated monitoring devices, technology offers a wide spectrum of implementation possibilities. Whereby some tools are developed primarily for enjoyment, as, for example, game applications, while others offer solutions to problems in daily living and aim to increase individual control over actions.

Said solutions are also targeted by the European project “TeNDER” (affecTive basEd iNtegrateD carE for betteR Quality of Life), which is currently running in the EU-funded Horizon 2020 programme. During the project, a technological, sensor-based system is being developed aiming to increase the autonomy of the user and thus also leading to an increased quality of life.

By giving the users possibilities to have control over their daily activities, TeNDER empowers them in various aspects. Therefore, users can manage their medication intake alone or schedule dates (medical or personal) with a Virtual Assistant and a Calendar-Function, which is especially important for users with memory impairment. Furthermore, users can track their activity with respective tools, or monitor their vital signs, like blood pressure or heart rate, and check their quality of sleep.

Moreover, with the linkage of various health sectors and services in the sense of integrated care, the TeNDER system connects patients with their respective physicians and carers. This way, more relevant information can be provided to make planned visits more efficient.

All in all, technology-based systems offer the user the means to lead a more independent and autonomous lifestyle despite the presence of disease, and empower him or her to take action in controlling their own health.

References

World Health Organization. (1986). The Ottawa Charter for Health Promotion.   Retrieved from http://www.who.int/healthpromotion/conferences/previous/ottawa/en/index.html

World Health Organization. Division of Health Promotion, E., & Communication. (1998). Health promotion glossary. Geneva: World Health Organization.