The Protection of Personal Data and Why It Matters

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. [1] 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.” [2]

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, [3] the General Data Protection Regulation (GDPR) is one of the most important sources for data protection in the EU. [4] 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.


[1] European Data Protection Supervisor, Data Protection (website), see

[2] European Union Agency for Fundamental Rights and Council of Europe, Handbook on European data protection law, 2018 edition, p. 19, see

[3] 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).

[4] 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

No man is an island – we are all social creatures

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 [1]. 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.” [3]

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.” [3]

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.” [3]

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.” [4]

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…” [8]

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.




[1] Peplau L, Perlman D. Loneliness: A Sourcebook of Current Theory, Research and Therapy. InterScience New York, 1982.

[2] Entis, L. ‘Scientists are working on a pill for loneliness’ Medium, 26.01.2019 [online] Available at: (Accessed: 15.04.2020).

[3] De Turenne, V. ‘The pain of chronic loneliness can be detrimental to your health’ UCLA Newsroom, 21.12.2016 [online] Available at: (Accessed: 15.04.2020).






On dementia

Myosotis – colloquially known as forget-me-nots

"What day is it?" asked Pooh.
"It's today." squeaked Piglet.

"My favourite day." said Pooh.

- A. Milne

All of us who have cared for patients living with dementia, know this progressive neurodegenerative disease steals memories, identities, and livelihoods. It often starts with mild, barely perceptible symptoms, making it hard to recognise what is happening, and it usually takes years to get a diagnosis. The main factor contributing to its development is age. As ageing populations are a worldwide reality, dementia is having a large social and economic impact.

People with dementia have problems with short-term memory, such as keeping track of a purse or wallet, paying bills, planning and preparing meals, remembering appointments, traveling out of the neighbourhood, etc. This worsens with time and people become more and more dependent on family and friends. This can go on for ten, fifteen years, or more. Alzheimer Disease International [1] and WHO [2] report it is one of the most expensive diseases with estimated socioeconomic costs topping $820bn each year; a third of care costs are from informal care.

Families usually adapt their lifestyles to members with dementia. There is the added complexity that much of this family care is provided by ‘sandwich’ generations who work as well as care for elderly family members and children. This is why it is so important to help people with dementia to be as autonomous as possible. Greater autonomy helps families worry less and facilitates social and health care delivery.

As dementia progresses, there are on average three people caring for one patient. In such a context, the term ‘living with dementia’ extends beyond the patients themselves, it involves their families and (in)formal carers. Research in this field has produced evidence on how to slow down the progression and fortunately, we also have different interventions and drug testing underway [3].

Emerging technologies are allowing communities to provide support. With new technologies, patients can be empowered to stay confident and independent. When necessary, modules that measure health parameters give professionals from the social and health care sectors remote access to patient dataand enable them to approach to the patient at the personalised level. Early interventions are beneficial for patients and their families, as well as to relieve the work and save the time of care systems professionals [4].

“Something that’s really important is to help people understand the level at which we want to be engaged. We still want to have social activities.”

– Anonymous Alzheimer’s patient

TeNDER will contribute to this research field by engaging key actors in the sector and leverage innovation to provide a concrete set of services to empower senior citizens in their daily activities. Moreover, the project will provide care institutions, professionals and authorities dedicated tools that could help them strengthen the management processes, as well as promote a framework for implementation and adoption. Ethics, and the integrity and privacy of all participants are key priorities as well.

In the context of COVID-19, all TeNDER partners – particularly partners who work directly with patients – have taken the necessary precautions to ensure the safety of vulnerable populations, patients, carers and health professionals. Spominčica – Alzheimer Slovenia, Servicio Madrileño de Salud,Asociación Parkinson Madrid, Schön Klinik and the University of Rome – Tor Vergata are currently implementing national and international COVID-19 health protocols (follow the links above to learn more).

For more information on the impact of COVID-19 measures and on international guidelines, here are some additional external resources for vulnerable populations:



“Some days there won’t be a song in your heart. Sing anyway.” – Emory Austin


The field of dementia care has changed beyond recognition in the last 30 years. In 1987 dementia was supposed to be a rare condition. It was barely spoken about and was seen as an insignificant part of older people’s psychiatric care [7]. Today, more than 10 million Europeans are diagnosed and living with different forms of dementia. The time needed for informal care is estimated at 82 billion hours and 71% of these hours are supplied by women.

Women make up the largest proportion of the professional care workforce in dementia care[8]. Furthermore, the number of people with dementia is still probably underestimated. We can see different interpretations of cognitive impairment and dementia due to differences in health structures, that affect diagnoses and treatments.Patients with mild cognitive impairment or early-stage dementia remain outside clinical settings and most patients are not diagnosed in a timely manner, or not diagnosed at all [9].

Early diagnosis is a crucial step in accessing care and support for a person with dementia. With a proper diagnosis, family members and carers can have timely access to education, training and support programmes. Being aware of these facts, different support opportunities can drive the decision to seek a diagnosis and help prolong the autonomy of people.



“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s, and the other was knowing I had Alzheimer’s.” – Terry Pratchett


I was invited to share my story about how my life has changed since my diagnosis of Alzheimer’s disease. I am pleased that my thoughts and positive attitude towards life were so well-received. I was told that I literally gave the attendees goosebumps! I try to always be open-minded and optimistic and to see the future in the brightest way possible. In my introduction, I told participants how I coped with the diagnosis and managed to re-organise my daily routine in order to live life to the fullest. I stressed that nothing has made me happier than realising what great friends I have.

Even though orientation is still the biggest challenge, on an everyday basis I continue with my leisure time activities, just as I always have done – playing tennis, ping pong, editing magazines, hiking, painting, and gardening. Currently, I am more worried, due to changes in my medical therapy, but I remain passionate about all the things I love. I gave the students a take-home message that I believe we all should take into account: “Even with dementia life is still beautiful” (Tomaž Gržinič) [10].

Don’t argue

Accept the situation

Nurture yourself

Creative problem-solving

Enjoy the moment!

As a person’s dementia develops, it is likely to have an impact on their ability to carry out certain activities. And here new technology can also help when managing the time, connections and planning. Meaningful activities such as taking a walk, cooking or painting can help preserve dignity and self-esteem. Some of the most beneficial activities can be simple, everyday tasks such as setting the table or folding clothes. They can help a person with dementia feel connected to normal life and can maximise choice and control. Some activities offer an emotional connection with others.

Throughout my caregiving journey, there were many moments of laughter, tears, frustration, sorrow and happiness, and I worked at incorporating them all into my repertoire. Some moments stand out as very special — like the time my husband who had not spoken for almost a year, replied, “You are the love of my life,” when I asked him if he knew who I was. It is these moments that kept me going.

Looking back, I think caregiving was one of the most difficult things I’d ever done. And as I watched the days turn into months, and then into years, I learned how to pace myself, how to reach out and ask and receive help. This did not occur overnight, but with lots of trial and error. Another thing I did that was invaluable was to join a support group. This in itself was a lifesaver and a source of comfort and socialisation. Fellow travellers make the best companion on the caregiving journey (Susan Miller) [11].



Dementia is not a single disease; it’s an umbrella term — like heart disease — that covers a wide range of specific health conditions. Diseases grouped under the umbrella term “dementia” are caused by abnormal brain changes. These changes trigger a decline in thinking skills, also known as cognitive abilities, severe enough to impair ones’ daily life and independent living. They also affect behaviour, feelings and relationships [5].

Dementia is caused by damage to brain cells. The brain has many distinct regions, each of which is responsible for different functions (for example, memory, judgment and movement). When cells in a particular region are damaged, that region cannot carry out its functions normally. This damage interferes with the ability of brain cells to communicate with each other. When brain cells cannot communicate normally, thinking, behaviour and feelings can be affected. Behavioural and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage.

Alzheimer’s disease (AD) is the most common form of dementia (60% – 80% of the cases). Besides age being a major risk factor, other risk factors include unhealthy lifestyles and vascular, metabolic, and nutritional risk factors [6].


Figure: Understanding the phases of pre-dementia and dementia (MOPEAD project publication)


Older adults often have some decline in memory like difficulties with reasoning, memory, attention, language, but some have the perception that they experience changes that go beyond normal ageing. In this case, we speak about subjective decline that needs to be confirmed by a formal examination.

People with mild cognitive impairment (MCI) – have problems with their memory or cognitive function serious enough to be noticeable with neurological tests. At this stage, it is very important, to recognise the problems and to help the person to stay autonomous as long as possible, to manage lifestyles and seek the doctor advice.

Mild dementia due to AD People may experience memory loss of recent events, may have an especially hard time remembering newly learned information and ask the same question over and over. At this stage, people have increasing trouble finding their way around, even in familiar places.

Moderate dementia due to AD people grow more confused and forgetful and begin to need more help with daily activities and self-care. These difficulties make it unsafe to leave those in the moderate dementia stage on their own.

Severe dementia due to AD – at this stage, the disease has a growing impact on movement and physical capabilities. They require total daily assistance with personal care [12].

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  4. OECD Policy Brief. Renewing priority for dementia: Where do we stand? Paris: OECD Publishing, 2018. Available at:
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  6. Rodríguez-Gómez O, Rodrigo A, Iradier F, Santos-Santos MA, Hundemer H, Ciudin A, Sannemann L, Zwan M, Glaysher B, Wimo A, Bonn J, Johansson G, Rodriguez I, Alegret M, Gove D, Pinó S, Trigueros P, Kivipelto M, Mathews B, Ciudad A, Ferreira D, Bintener C, Gurruchaga M, Westman E, Belger M, Valero S, Maguire P, Krivec D, Kramberger M, Simó R, Garro IP, Visser PJ, Dumas A2 Georges J, Jessen F, Winblad B, Shering C, Stewart N, Campo L, Boada M; MOPEAD Consortium. “The MOPEAD project: Advancing patient engagement for the detection of ‘hidden’ undiagnosed cases of Alzheimer’s disease in the community.” Alzheimer’s & Dementia; 2019; 15 (6): pp. 828-839
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How can assistive technology respond to new healthcare demands in Europe?

Resolution 60.29 of the World Health Assembly (WHA) on Health Technologies recognises that medical devices are indispensable tools in the provision of medical care for prevention, diagnosis, treatment, and rehabilitation. It also recognises that they are essential to achieving internationally-agreed health-related development goals, including those set by the Millennium Declaration (1).

In addition, the WHA resolution 61.21 on the global strategy and action plan on public health, innovation and intellectual property acknowledges that current initiatives are not sufficient to overcome the challenges of guaranteeing access and facilitating the innovation of health products and medical devices (2).

Assistive technologies enable people to live healthy, productive, independent, and dignified lives, and to participate in education, the labour market and civic life. Furthermore, these technologies help reduce the need for formal health and support services and long-term assistance, as well as ease the burden of care placed on caregivers (3). 

Without assistive technology, people are often excluded, isolated, and locked into poverty, thereby increasing the impact of disease and disability (4).

With an ageing population in Europe, cognitive, neurological, cardiac disorders and other chronic illnesses are becoming more frequent, generating changes in social and health needs (5). This reality is associated with the incidence of multi-morbidities – where two or more chronic illnesses co-occur –  which makes it important to re-orient health systems towards better monitoring the population and promoting greater independence (5, 6). 

Improving the quality of life of patients and those around them is one of the priority objectives of the European Union (7). TeNDER adopts this priority as a guiding principle. In practice, the project tools integrate a modular, personalised system capable of recognising changes in habitual behaviour, movements and mood using a multisensory system. This information is then shared with all relevant actors involved in the patient’s care. 

Who can benefit from TeNDER?

– Patients with Alzheimer’s disease (AD), Parkinson’s disease (PD) and co-morbidity with other chronic illnesses, such as cardiovascular disease (CVD).

– Caregivers: formal and informal ones.

– Social and health care professionals: physicians, nurses, physiotherapists, social workers, etc.

– Patient associations.

Which health, well-being and socioeconomic benefits?

TeNDER‘s integrated care approach incorporates assistive technologies, and this can have a positive impact on the health and well-being of a person and their family, as well as broader socioeconomic benefits. For example:

– The doctor and the patient will be alerted when cardiovascular risk begins to present complications in her/his health condition, having the possibility of anticipating a cardiovascular event (8). 

– The caregiver of a person with dementia may know the location of the patient and whether she/he  is at home, in the neighbourhood, or has gone off their usual paths, having the possibility of finding the patient in case she/he gets lost (9). 

– A physiotherapist may have a record of a patient’s gait pattern to further individualise treatment (10). 

– A social worker can be alerted if the home of a dementia patient does not meet the conditions for decent housing in the event of inadequate temperature, electricity problems, gas leaks, etc. (3).

These examples illustrate how assistive technologies play an essential role in TeNDER’s integrated care framework, which also takes great care to ensure the privacy of patients and to protect the data they generate to keep them safe. 


1. Sixtieth World Health Assembly. Health Technologies. WHA60.29. 2007; May: 2-3. Available from: 

2. World Health Organization (WHO). Global Strategy and Plan of Action. 2011. 

3. Piau A, Wild K, Mattek N, Kaye J. Current state of digital biomarker technologies for real-life, home-based monitoring of cognitive function for mild cognitive impairment to mild Alzheimer disease and implications for clinical care: Systematic review. Vol. 21, Journal of Medical Internet Research. Journal of Medical Internet Research; 2019. 

4. Huckvale K, Venkatesh S, Christensen H. Toward clinical digital phenotyping: a timely opportunity to consider purpose, quality, and safety. NPJ Digital Medicine. 2019 Dec;  2(1). 

5. Sue T. Expert patients: Sue Thomas explains why the government’s Expert Patient initiative will enable nurses to help patients move away from a disease focus towards independence and a better quality of life. Primary Health Care. 2001; 11(9): 20-1. 

6. Haslbeck J, Zanoni S, Hartung U, Klein M, Gabriel E, Eicher M, et al. Introducing the chronic disease self-management program in Switzerland and other German-speaking countries: Findings of a cross-border adaptation using a multiple-methods approach. BMC Health Service Res [Internet]. 2015; 15(1). Available from:

7. World Health Organization (WHO) Patient safety: Global action on patient safety. 72nd World Health Assembly: provisional agenda item 125. 2019. 

8. Teo JX, Davila S, Yang C, Hii AA, Pua CJ, Yap J, et al. Digital phenotyping by consumer wearables identifies sleep-associated markers of cardiovascular disease risk and biological aging. Commun Biol. 2019 Dec 1; 2(1). 

9. Kourtis LC, Regele OB, Wright JM, Jones GB. Digital biomarkers for Alzheimer’s disease: the mobile/wearable devices opportunity. [cited 2020 Feb 10]; Available from:

10. Vaidyam, A., Halamka, J. and Torous, J. (2019). “Actionable digital phenotyping: a framework for the delivery of just-in-time and longitudinal interventions in clinical healthcare,” mHealth. AME Pub. mHealth. 2019 Aug; 5: 25–25.