We dedicate this text to those who want to learn more about how this occurs, and the support mechanisms that might stall this process and mitigate the negative consequences of the tendency toward inactivity.Lies weiter
Europe is ageing. People are living longer; fertility rates are falling; and in some cases, inflows of retirees have altered countries’ demographics dramatically.Lies weiter
Here, we will focus on the specific ICT-based interventions designed to detect falls. The TeNDER system uses devices equipped with sensors to monitor and support the physical status of older adults.Lies weiter
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’’. 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.
 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.
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.
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.
Photo by NASA on Unsplash
First, we need to reinforce, raise awareness of and spread the well-established principles that govern what constitutes a valid intellectual contribution. Practices such as peer review, competitive process for funding research, requirements to publish data, and transparency about conflicts of interest are fundamental to academic life. Most people are unaware of these practices, which are the bedrocks of academic quality and progress […]
– Nemat Shafik, Times Higher Education (2017)
What’s in a fact?
Across the world, the terms ‘post-truth’ and ‘post-fact’ proliferate daily in connection to politics, science, and of course, COVID-19. If we are to believe the headlines, we live in a world where facts and expertise no longer shape realities, public discourse, or political decisions.
However, even as contradictory ‘facts’ circulate, all sides of recent debates assure us that they appeal to truth and fact. Each side accuses the other of being misinformed and spreading misinformation. These words are not misunderstood; indeed, a vague agreement of their meaning exists amongst all users.
Instead of implying that we’ve surpassed truth and fact, time and publication space may be better spent reminding us what it takes to build a fact. The methodologies may differ in each discipline, but a common principle runs through each process: the need for robust evidence.
For some, facts are observed and intuited, for others, they are supported by studies, experts, and institutions, and for many still, facts are the product of scientific consensus. However, as Nemat Shafik, Director of the London School of Economics, stated in 2017: it takes much more than one element to build a fact.
Good researchers are not only curious and knowledgeable, but they also take time to learn, innovate, and apply the methods that help frame each discipline, and they adhere to strict ethical standards.
Today, researchers are also tasked with communicating their work to ensure people’s trust in science. This is an important endeavour and it is a responsibility that extends beyond academia. It lies with politicians, news media, and primary education (to name a few).
As John Oliver points out, however, not all scientific studies out there are created equal. Some (often retracted for shoddy methodologies) seek to legitimise deplorable and potentially dangerous beliefs about race, vaccinations, gender, etc. Others are financed by industries for lobbying purposes. Still others are the product of unethical behaviour.
Algorithms may help weed out inaccuracies on social media, but this is a passive way of countering misinformation. The practice of communicating the basic tenets of good research empowers people and helps develop curiosity, as well as the skills to assess the strength of a fact.
Therefore, it is important to communicate not only what researchers do, but how they do it. How they build the robustness of a fact. Good science takes time, it’s founded on previous knowledge and uses different types of data, in many fields it must be reproducible, it should be peer-reviewed, it builds consensus, it accepts its limitations, and it is transparent about its methods and procedures.
We cannot be experts in everything, but understanding what makes “a valid intellectual contribution,” can help us discern between facts and information that disguises itself as fact.
The responsibility of projects like TeNDER
In TeNDER, user consent entails informed consent. Pilot participants will know exactly what types of tools will be used to assess their physical and mental health, how the data they generate will be processed, and how it will be protected.
Our user partners have passed rigorous ethical committee assessments and will be there to explain each tool and support all participants with the help of the technical partners.
The project consortium has also developed a model for co-creation with target users to ensure trust and that the tools are fit-for-purpose.
Like all Horizon 2020 projects, TeNDER is committed to the principles of open access. The consortium will widely disseminate results and submit periodical progress reports.
We will communicate throughout the project duration and hopefully beyond. As the preliminary pilots are set to launch soon with a cohort of people affected by Alzheimer’s and other forms of dementia, Parkinson’s disease, and Cardiovascular disease, we look forward to sharing this project journey with you.
There is no doubt that the global pandemic caused by COVID-19 has impacted all sectors of society and the population as a whole. In this article, we will focus on the impact that it has had (and continues to have) on people affected by Parkinson’s disease and share the strategies Asociación Parkinson Madrid developed during the lockdown in order to alleviate this situation.
Parkinson’s disease is neurodegenerative and chronic. Today, there is no cure, therefore, treatment seeks to counteract symptoms with both medication and therapies with the aim of keeping the person autonomous for as long as possible and improving their quality of life. Both treatments, pharmacological and therapeutic, are essential for people with Parkinson’s.
The general lockdown that countries in Europe experienced led entities, such as Asociación Parkinson Madrid (APM), to implement telework solutions and teletherapies so that people affected by the disease could continue their treatment.
On 11 March, APM had to close its doors due to the deteriorating situation. At that time there were more than 600 patients following their rehabilitation at our centres and with home assistance. All APM professionals were teleworking by the end of March. We called patients to learn more about their needs and concerns, and to evaluate the impact COVID-19 and the lockdown measures were having on them.
Professionals were concerned about their patients’ therapies because it is known that long periods of inactivity can worsen symptoms. So, it was important that, given the impossibility of providing therapies at home and in APM centres, those affected by Parkinson’s disease could continue their therapies at home.
In this context, APM started providing physiotherapy, speech therapy, and psychological care, using new technologies, allowing us to maintain contact with patients. Although everything changed very quickly, APM’s response unfolded in stages.
At first, APM used social networks such as Twitter, LinkedIn, and Facebook to share exercise infographics. This enabled patients to follow therapeutic instructions. However, the lack of personal contact sometimes made it difficult to follow the steps laid out in the infographics. Sometimes patients phoned the association to request further explanations, sharing their difficulties in carrying out some of the exercises. Dealing with this aspect over the phone was very difficult for APM therapists.
The next step involved streaming the therapy sessions. The videos with the exercises performed by the therapist were previously recorded. Space and the home conditions were taken into account. The interaction in the YouTube chat was very positive, both between the patients and with the therapists, an aspect that was useful in improving the sessions.
The last step was to develop one-on-one tele-rehabilitation, which allowed patients to choose different rehabilitation sessions and have direct contact with their therapists.
APM therapists Jessica Jiménez Cruz and Rocío Martín Picazo, who were involved in this entire process, shared their experiences, pointing out the most positive aspects and the aspects that need to be improved.
Among the aspects that need to be improved, they both point out that there is still a technological gap in regard to older people’s digital skills. Older patients often turned to their relatives, grandchildren, and caregivers to overcome this difficulty and many learned from them. The gap remains, however.
From the technical point of view there was also an internal learning process, the first videos are of less quality compared to later ones where lighting or positioning were considered. Another issue that arose concerned the lack of interoperability between some of the devices, software, and video formats.
One of the positive aspects of tele-rehabilitation that Jessica Jiménez pointed out, has been that it allows therapists to personalise the sessions; that is, it allows people affected by Parkinson’s disease and their families to use this tele-space with their therapist to fit their specific needs. In addition, this experience has provided a new working model for professionals who until now were not usually considered for telework.
For Asociación Parkinson Madrid, there is no doubt that new technologies are the future and that more and more will be introduced in the field of health. Our next steps will include improving tele-rehabilitation and making it more accessible for a greater number of older people by helping them bridge the technological gap and adapt to a new reality.
People’s needs are continuously changing. Technology, organisations, and cities are always evolving and with this evolution, new social, economic and environmental challenges emerge. Often, communities (e.g., of cities, authorities, managers, etc.) are looking for novel ways of identifying human needs and difficulties, to take rapid and effective actions that improve lives.
This is where smart solutions designed by pioneering high-tech companies like Ubiwhere arise, to completely change the way we look at people’s interactions and behaviours by collecting, digitalising, and analysing data from sensors, platforms, and applications.
Data represents a valuable tool to support decision-making and strategies in diverse contexts. Collecting and correlating data from distinct sources within an environment – a city, building, healthcare facilities, etc. – gives people a holistic view of the communities living, visiting or working in it. Decision-makers and responsible entities can use this information to identify the need for altering certain services or infrastructures to suit people’s needs and expectations.
Ubiwhere, for instance, typically collects urban data (on mobility, environmental conditions, as well as safety and quality of life) to provide city managers and other authorities real-time information about a city’s ecosystem. By drawing indicators on the quality of life of people living or visiting a particular city or building, we help city managers visualise and be conscious of what works and what needs to improve. Our responsibility is to cross-reference the data from a variety of sources and display it in intuitive and customisable dashboards, which give decision-makers valuable insights and help enable coordinated responses.
But in any context, with the purpose of presenting assorted information in a unified, integrated, and understandable way: one must ensure that different devices, platforms, and networks are able to communicate with each other and that the data is open and available for use. Interoperability amongst different systems is thus a determining factor.
But what is interoperability?
Interoperability is, in a very succinct way, “the ability of different systems, devices and applications to exchange and make use of information.”
There are a myriad of useful devices, networks and platforms, but even when there is a high offer of all of these components, if they do not speak the same language, they will not be able to work together and create an efficient smart system.
Interoperability and standardisation are what allow software developers and managers, for instance, to get contextual information from different sources and operate with the purpose of optimising different services collectively. They can manage multiple applications through well-defined interfaces and without being tied to a particular vendor or technology.
Interoperability is decisive when it comes to the success of digital systems for assisted living and healthcare
TeNDER brings together renowned organisations from the healthcare sector, research centres, and companies with vast experience in high-tech development, to create an integrated care model to help manage multi-morbidity in patients with neurodegenerative diseases.
To achieve such an innovative vision, it is essential to design a standard tool able to support interoperability among different systems operating in diverse settings.
Collecting data in a safe manner from different sources in different contexts (through location and environmental sensors, cameras and affective recognition technology, etc.) and cross-referencing it with background information on the patient, will help alert us to changes that could lead to health complications.
Towards more personalised healthcare
The system will store this information as a set of indicators and patterns on the patients’ quality of life under certain conditions. Healthcare professionals will get a holistic view of their patients so they can proactively address specific needs and support the autonomy of those who live independently.
It aims at transforming the way healthcare professionals interact with their patients and with each other.
Projects like TeNDER represent an opportunity to seize the findings and know-how in data orchestration, standardisation, and interoperability and apply in many other contexts to provide truly smart living across all sectors.
We aim at building a standard and interoperable solution that centralises the collection and processing of data from heterogeneous sources and systems in a single platform; and harmonises diverse types of integrations, standards, and protocols with applicability in different communities and, to improve the lives of all people and create a safer, more inclusive and sustainable world.
Partners in the TeNDER project are developing an integrated care model to manage co-occurring chronic illnesses in patients with Parkinson’s Disease, as well as Alzheimer’s and other forms of dementia. To create a personalised experience for all users, the TeNDER system will gather personal and medical information from patients, using various technologies including health bands and sensors. Through the development of this system, the project aims to support users through their entire clinical journey and to help improve their quality of life and of those who surround them.
Why is it important to consider data protection?
The concept of data protection stems from the right to privacy. Both are vital, not only to safeguard and promote fundamental rights and values, but also in the exercise of other fundamental rights and freedoms.  Nevertheless, they are separate rights. While the right to privacy “consists of a [more] general prohibition on interference,” the right to protection of personal data is generally viewed as a more modern and active right, “putting in place a system of checks and balances to protect individuals whenever their personal data are processed.” 
The protection of personal data is considered a fundamental right. The collection and use (or processing) of personal information, including about their health, in a project such as TeNDER might therefore have an effect on the fundamental rights of the research participants and eventual users of the TeNDER system. While acknowledging the importance of protecting privacy and personal data, there can be reasons that justify the processing of personal data. In order to ensure that such processing of personal data respects the fundamental rights of those of whom data is collected, it may only take place under strict compliance with necessary safeguards.
How is the protection of data regulated in the EU?
In addition to a number of European and EU instruments that lay down the right to the protection of personal data,  the General Data Protection Regulation (GDPR) is one of the most important sources for data protection in the EU.  The GDPR harmonises the rules related to data protection across Europe, while leaving room for Member States to adopt their own (complementary or stricter) national rules in certain areas.
Article 1 sets out the GDPR’s two main objectives, namely i) to protect fundamental rights and freedoms of persons, in particular their right to the protection of personal data, and ii) the free movement of personal data within the EU. These are the overarching principles that should always be taken into consideration in the application of the GDPR.
What is personal data and what are the basic principles for data processing?
What does the term personal data mean? In Article 4, the GDPR defines personal data as “any information relating to an identified or identifiable” person, meaning anyone who can be identified, directly or indirectly, for instance by reference to a name, an identification number, location data or other identifiable information. The processing of this type of information is protected by the GDPR. The term ‘processing’ here refers to, among others, the collection, recording, organisation, storage, alteration, retrieval, consultation, dissemination, erasure or the destruction of personal data.
The GDPR, in Article 5, sets out a number of principles that always need to be taken into account when processing personal data. Compliance with these principles will ensure the safe handling of personal data that respects the fundamental rights of those of whom data is processed.
One of those basic principles is that of lawfulness, which requires that all processing of personal data shall be based on one or multiple legitimate grounds set out in Article 6 of the GDPR. For special categories of personal data which are, by their nature, particularly sensitive (e.g., personal data revealing racial or ethnic origin, biometric data, data concerning health), processing is in principle prohibited, unless it is based on one or multiple legitimate grounds set out in Article 9 of the GDPR.
Another principle, that of purpose limitation, requires that personal data shall be collected for specified, explicit and legitimate purposes and may not be processed further in a manner incompatible with the original purpose. Moreover, according to the principle of data minimisation, no more personal data shall be collected than what is necessary for the realisation of the purpose for which they are processed. For example, collecting data that is not strictly necessary for the realisation of the TeNDER project would breach the data minimisation principle.
The principle of storage limitation requires that personal data is kept in a form which allows identification of the individual for no longer than is necessary for the purpose for which they are processed, though it may potentially be stored for longer periods in cases of processing solely for, e.g., archiving purposes in the public interest or scientific research purposes.
Together with the remaining principles (fairness and transparency, accuracy, integrity and confidentiality, and accountability) set out in Article 5, they form the basis of safe data processing under the GDPR and ensure that the fundamental rights of those of whom data is processed are protected.
TeNDER and data protection
With the TeNDER system intending to gather personal and medical information from its users, the consortium will ensure that processing of such personal data will comply with the rigorous legal guidelines set out above and in the GDPR as well as relevant ethical guidelines. This will guarantee that the fundamental rights of the research participants and eventual users of the TeNDER system are protected.
 European Data Protection Supervisor, Data Protection (website), see https://edps.europa.eu/data-protection/data-protection_en.
 European Union Agency for Fundamental Rights and Council of Europe, Handbook on European data protection law, 2018 edition, p. 19, see https://op.europa.eu/en/publication-detail/-/publication/5b0cfa83-63f3-11e8-ab9c-01aa75ed71a1/language-en.
 Article 8 of the Charter on Fundamental Rights of the European Union (7 December 2000); Article 16 of the Treaty on the Functioning of the European Union (25 March 1957).
 EU Regulation 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation), see https://eur-lex.europa.eu/eli/reg/2016/679/oj
How the current isolation affects us and especially the most vulnerable
“I think it’s very healthy to spend time alone.
You need to know how to be alone and not be defined by another person.”
– Oscar Wilde
What a strange world we live in these days! Due to the outbreak of Covid-19 and the current pandemic, public authorities across Europe decided in March that social distancing measures are necessary to slow down the spread of the virus. Social distancing, also called ‘physical distancing’, means maintaining space between yourself and others.
But is physical isolation not directly linked to social or emotional isolation? What happens when the beneficial ‘alone time’ described by Oscar Wilde exceeds the quantity of time we would like to spend alone? How do the elderly or people with neurodegenerative diseases such as Alzheimer’s perceive these times?
Loneliness is defined as a subjectively experienced aversive emotional state resulting from unfulfilled social needs . Unlike depression or anxiety, loneliness is not clinically recognised; therefore, those who feel chronically isolated cannot be diagnosed or treated. However, loneliness makes us more susceptible to infections as it weakens the immune system.
How loneliness turns into disease
“Inflammation fuels disease processes in a host of devastating illnesses, including atherosclerosis, Alzheimer’s and cancer. […] Inflammation is not the disease itself; rather, it serves as a kind of molecular fuel that helps the disease thrive and grow.” 
When we experience loneliness, our body produces a defensive reaction at the cellular level to prepare it for any coming dangers. A part of our defense capacity is used for this.
“Our bodies see loneliness as a mortal threat. When we’re alone, there’s no one to help us fight off that saber-tooth tiger or the hostile war party from the next village. Sensing that we are isolated and at risk, our bodies ramp up their defences in anticipation of the wounds and infections to come. It was a pretty good survival tactic thousands of years ago. In the modern world, though, it’s killing us.” 
Emotional and physical pain is processed similarly by the brain. Humans are social creatures and therefore, interactions and connections are crucial for us. Researchers think that throughout evolution pain signals could have been “borrowed” to alert when we are socially isolated. In one sentence: “We need to take social pain just as seriously as we do physical pain.” 
We live in an individually-oriented society
What happens if in these times you live alone, or an elder member of your family does? According to figures published by Eurostat in July 2018, 34% of households in the EU were single-person households.
“Sweden tops the chart with over half (51%) single households, followed by Denmark (44%) and Lithuania (43%). At the other end Malta had just 20% single households, 22% in Portugal and Slovakia.” 
With the current contact restrictions, all these people spend much more time alone than usual. What can we do now to support the most vulnerable, such as the elderly and those suffering from a disease?
It is very important to stay connected. If the isolated person is not familiar with social media or the most recent communication technologies such as Zoom or Skype, use the good old telephone. Call him or her, every day. Give some of your time, capital which many of us dispose of these days.
You know that your neighbour is part of the risk group but you have never talked to him or her before? What if you leave a message in their letterbox or in front of the door, proposing to go grocery shopping for them or taking their dog for a walk.
You can also suggest to an isolated, vulnerable family member or friend to listen to music or to get creative and try painting to feel less alone. All the senses are no longer stimulated without external input. Especially for the elderly, these factors can deteriorate their cognitive functions and directly affect their health.
In the framework of our European research project TeNDER, we are developing an integrated care model for patients with neurodegenerative diseases, mainly, Parkinson’s, Alzheimer’s and other forms of dementia.
TeNDER will be useful in the care pathways of remote monitoring and it will help increase patient autonomy. Relatives and caregivers will feel more secure as they can manage care remotely. All this happens without face-to-face contact, therefore the current risk of exposing them to contamination can be greatly reduced while the sense of safety on both sides and the interconnection are maintained.
As John Donne already wrote in a poem in 1624: “No man is an island entire of itself; every man is a piece of the continent, a part of the main…” 
These reflections on solidarity seem still to be true 400 years later. No one suffers alone, we are in this together. Every crisis makes us stronger and this one certainly will, too.
 Peplau L, Perlman D. Loneliness: A Sourcebook of Current Theory, Research and Therapy. InterScience New York, 1982.
 Entis, L. ‘Scientists are working on a pill for loneliness’ Medium, 26.01.2019 [online] Available at: https://www.theguardian.com/us-news/2019/jan/26/pill-for-loneliness-psychology-science-medicine (Accessed: 15.04.2020).
 De Turenne, V. ‘The pain of chronic loneliness can be detrimental to your health’ UCLA Newsroom, 21.12.2016 [online] Available at: https://newsroom.ucla.edu/stories/stories-20161206 (Accessed: 15.04.2020).