Stories/Lived Experience
Author: Evelyn Soye, Research Assistant with the SHAPES Project (Department of Law and ALL Institute at Maynooth University)
According to European Commission’s Report on the Impact of Demographic Change, people aged over 65 account for the majority of the 50 million EU citizens who suffer from two or more chronic conditions. Meanwhile, it is estimated that demographic ageing in Europe will mean that the number of people aged 65 years and over will increase to almost 130 million by 2050. Therefore, although Europeans are living longer, increased lifespans can be associated with declining health and a greater prevalence of chronic disease and physical and cognitive impairments (UN Special Rapporteur on the Rights of Persons with Disabilities, 2019).
SHAPES (Smart and Healthy Ageing through People Engaging in Supportive Systems) is an EU funded project working to develop a pan-European online platform that will provide a range of supports to older persons to facilitate their continued healthy and independent living. The project brings together thirty-six partner organisations and research institutions, across fourteen European countries, with expertise in health, social sciences, IT development, robotics, healthcare, care service provision and advocacy. Under the supervision of Prof. Delia Ferri, Co-Director of the ALL Institute, my role within SHAPES involves researching the relevant EU legal framework and investigating the extent to which it can best support the provision of inclusive, integrated health and care services.
Having previously worked on a Horizon 2020 legal research project and as a Trainee (Stagiaire) in the EU courts, the Research Assistant position in SHAPES was of particular interest to me as an opportunity to apply and to continue to progress my knowledge of EU law, its objectives and limitations. A broad range of legal and policy areas are concerned in the SHAPES ambition of providing health and care services, via an online platform, across the borders of the EU Member States to older persons, including persons with disabilities and vulnerable adults. Therefore I was excited by the opportunity to contribute to such an ambitious project, that combines various disciplines, with the objective of promoting the rights and improving the quality of life of older persons across the EU.
My work as a Research Assistant touches upon a range of areas of EU law and policy; including the protection of fundamental rights and freedoms as they pertain to both care recipients and caregivers, to exploring the competence of the EU institutions to act in areas such as health, technology, disability, ageing and the rights of older persons. As part of my research tasks, and among other matters, I have explored the issue of divergent protection regimes for vulnerable adults across the EU, the question of informed consent in respect of vulnerable adults, and the role of the European Ombudsman in the EU implementation of the UN Convention of the Rights of Persons with Disabilities (CRPD). Furthermore, I contribute to other work packages within the SHAPES Project. Indeed, the multidisciplinary aspect of the project has opened my eyes to the collaborative work of expertise across academia and industry involved in making the SHAPES ambition a reality.
In the context of the Covid-19 pandemic, I have been working from home since I joined SHAPES in April of this year. While it certainly raises its own challenges, my experience of working from home in SHAPES has, on the whole, been very positive. Given the internationality of the SHAPES consortium, online communication and interaction is an integral feature. Despite the geographical distance and the scale of the project, in my view, this has been very successful in SHAPES, with a welcoming and collegial rapport amongst the team.
Through my research work with SHAPES, I have certainly gained a deeper knowledge of EU law, in particular in the areas of health, disability, and technology, as well as the particular EU policy approaches governing EU action in these areas. In particular, in investigating the regulatory framework to support the development of the SHAPES integrated care platform, I have found the interaction between these areas very interesting. For example, how to address the issue of informed consent in the case of vulnerable adults in research trials and pilots in light of Article 12 CRPD, which recognises the legal capacity of persons with disabilities on an equal basis with others.
Under the excellent supervision and mentoring of Prof. Ferri, I have been encouraged to take responsibility and ownership of my work and afforded fantastic opportunities, such as guest lecturing to final year law students at Maynooth University, and contributing to academic research publications. Additionally, I have found the interdisciplinary approach in SHAPES particularly valuable as an opportunity to learn from different perspectives and to receive valuable contributions and feedback from diverse fields of expertise. It is inspiring seeing the commitment and passion of all of those involved in furthering the ethics, policies, and technologies to realise the greatest potential for SHAPES to have an enduring positive impact on the lives of older persons and older persons with disabilities.
I am very grateful to be part of such worthy and ambitious work, and I am excited to see how this collaborative effort comes to fruition over the course of the project and beyond.
The SHAPES project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 857159.
