Achieving Interoperability in Digitalised Healthcare in the European Union

Research Stream: Social Technologies

Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning (ALL) Institute, Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)

In October 2021, MedTec Europe released a white paper in collaboration with the European Coordination Committee of the Radiological, Electromedical and Healthcare IT Industry (COCIR) titled, ‘Interoperability Standards in Digital Health: A White Paper from the Medical Technology Industry’. It defines interoperability in digital healthcare as “the ability of different information systems, devices and applications (systems) to access, exchange, integrate and cooperatively use data in a coordinated manner, within and across organisational, regional and national boundaries, to provide timely and seamless portability of information and optimise the health of individuals and populations globally”. It also underscores the fundamental importance of interoperability, stating that, “Lack of interoperability is widely acknowledged to be a critical barrier for the adoption and deployment of digital health technologies and for the digital transformation of healthcare”. To this end, interoperability in digital healthcare represents an indispensable systems component and critical necessity for the provision of modern healthcare in the European Union (EU).

To date however, the digitalisation of healthcare in the EU has encountered a complex web of bureaucratic, social and legal challenges due to a fragmented digital health technology market and poor inter-agency cooperation resulting from insufficient interoperability between structures and stakeholders on a national and international level. This has greatly slowed the pace at which potential benefits of digital technology can be translated into tangible improvements in healthcare and quality of life for people in the EU. The European Commission (hereinafter referred to as the ‘Commission’) has arguably been slow to take decisive measures to enhance cross-sectoral coordination by reforming regulatory frameworks governing digital healthcare technologies. As such, data sharing, procurement and administration of digital technologies in the care environment has been governed by customary national laws of individual EU member states. Discordant legal rules and standards across the EU limit the ability of businesses developing and marketing digital health technologies such as robots and connected devices and services to operate effectively in the single market. Deficits of strategic cross-sectoral interoperability in the digitalisation of healthcare infrastructure and a lack of interagency communication and cooperation has discernibly contributed to the longevity of traditional, non-digital and wardship models of care provision, particularly for vulnerable individuals including older people and persons with disabilities.

Perhaps understandably, the Commission has approached the emergence of digital health technologies with a significant degree of apparent caution. In the absence of measures to promote wide-scale uniformity in procurement and implementation processes for connected devices and services in the care environment, the cohesive integration of these modern capabilities represents a slow and costly challenge for a siloed and fragmented European healthcare sector. In its approach to digital health technology, the Commission has assumed an unhurried and deliberate process of supporting research initiatives funded through programmes such as Horizon 2020 and Horizon Europe. The logical reasoning here is to assess, trial and identify examples of best practice in digitalisation within the care sector through the professional utility and implementation of digital technologies by clinicians and care workers. In this way, a trial-and-error process through practice and research can be established, with the experiences of the carer playing an important role in determining the practical challenges of ensuring effective implementation of digital health technologies in the care environment.

The digital healthcare technology industry in the EU is splintered and disorganised, even within the context of the single market. The following Commission Communication document from April 2018 titled ‘Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on Enabling the Digital Transformation of Health and Care in the Digital Single Market; Empowering Citizens and Building a Healthier Society’, announced the following strategic initiatives:

To date, the uptake of digital solutions for health and care remains slow and varies greatly across Member States and regions. Further action at EU level is crucial to accelerate the meaningful use of digital solutions in public health and healthcare in Europe. In its mid-term review on the implementation of the Digital Single Market (DSM) 2014 – 2019 strategy the Commission set out its intention to take further action in three areas:

  1. citizens’ secure access to their health data, including across borders, enabling citizens to access their health data across the EU;
  2. personalised medicine through shared European data infrastructure, allowing researchers and other professionals to pool resources (data, expertise, computing processing and storage capacities) across the EU;
  3. citizen empowerment with digital tools for user feedback and person-centred care using digital tools to empower people to look after their health, stimulate prevention and enable feedback and interaction between users and healthcare providers” (European Commission, 2018).

To this end, in 2022, the Commission put forward a proposal for a regulatory framework for the sharing of health data within the EU called the ‘European Health Data Space’ (EHDS) (European Union, 2022). According to the Commission, it will function as “a common EU data space for health data that empowers individuals and fosters a single market for electronic health records”. Further to this, “in 2024, the European Parliament and Council reached a political agreement on the Commission Proposal for the EHDS”. The EHDS is an important pillar in the construction of the European Health Union which aims to create a more unified, harmonised and effective healthcare system throughout the EU and to ensure the availability of medical supplies. These measures also address significant aspects of the three areas outlined above in the 2018 Commission Communication on the Digital Transformation of Health and Care.

In April 2024, the Interoperable Europe Act entered into force in the EU, representing an important step towards the harmonisation of “key” public services as part of the broader Digital Decade strategy. However, extending broader strategic digital interoperability across healthcare systems in the EU arguably requires dedicated and sector-specific legislative overhaul. Interoperable digitalised systems that empower caregiver engagement with stakeholders in policymaking and identification of good practice is necessary to facilitate smooth delivery of high standards in modern care. Digitalised interoperable healthcare systems with seamless transmission of patient health data, alongside appropriately scalable, cost-effective and rapid procurement mechanisms in the implementation of digital technology for effective service provision can maximise the efficiency and expertise of an invaluable care workforce.

Although certain long-anticipated initiatives are underway to harmonise digital healthcare systems in the EU through enhanced interoperability and an easing of some inhibitory regulatory barriers to the smooth functioning of health technology companies in the single market, change is happening at an often-lethargic pace. Unfortunately, this puts an unwelcome delay on the latent potential benefits that could be felt by carers and patients at an individual level given the current state of digitalised technological innovation. Furthermore, carers note that interoperability and scalability challenges often become apparent when trialling digital technologies in the care environment. As such, the involvement of healthcare workers in the creation of policy and best practice for the interoperable digitalisation of the care environment is critically important. Caregiver engagement mechanisms in Commission policymaking and communication with industry represent essential components in the development of digital interoperability frameworks that function smoothly and effectively, delivering versatile person-centred digitalised healthcare at an EU-wide level.

At Their Fingertips: The First International Day of Intangible Cultural Heritage 

Research Stream: Social Lives 

Author: Eva Sophie Krolla, Research Assistant, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING)  

On 17th October 2003, exactly 21 years ago, the General Conference of the United Nations Educational, Scientific and Cultural Organization (UNESCO) adopted the Convention for the Safeguarding of the Intangible Cultural Heritage (hereinafter: the 2003 Convention). The 2003 Convention represents a milestone in recognising immaterial cultural heritage and complements UNESCO’s efforts under the Convention Concerning the Protection of World Cultural and Natural Heritage of 1972 with its well-known World Heritage List. In honour of this, the General Conference of UNESCO declared 17 October the ‘International Day of Intangible Cultural Heritage’ at its 20th anniversary in 2023, which will be celebrated for the first time this year. To date, 183 States Parties have acceded to the 2003 Convention including all 27 European Union (EU) Member States, with Malta being the last one to ratify it in 2017. 

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A Note from the Editors of the Ideas-In-ALL Blog to Start the Semester 

Research Stream: Editorial

Editorial Team: Cassandra Murphy, Hannah Casey, Matthew McKenna, Neasa Boyle 

After a brief, restorative hiatus over the summer months, the blog has now returned full time and is ready to once again highlight and facilitate the communication of strong, important research happening in the ALL community. As always, we aim to share knowledge that best encapsulates our ethos, a task that is made all the more possible by the diverse and exciting range of projects under the ALL Institute banner.

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As always, we look forward to hearing from the researchers behind these projects, who have historically contributed generously to us, both in our regular postings, and across our three symposiums, the fourth of which will be posted this coming December. We have been fortunate enough to witness the progress of these projects over the last four years and look forward to doing so again by affording researchers the opportunity to submit posts to us, in which they tell us about their ongoing achievements in their own words. Therefore, as we enter a new academic year, we the editors wish to drop our readers a brief note to highlight the continued excellence of the ALL Institute, and to give a brief overview of the work that we hope to feature on the blog in the coming months. 

To this end, the remit of the ALL Institute continues to expand, forging strategic connections across a diverse network of professional researchers and organisations. It incorporates a synergistic array of state-of-the-art research projects that, at their core, seek to promote person-centred and inclusive digital, social and technological development into the future.  

In the words of the ALL Institute, “We work across disciplines, sectors and while remaining committed to independent research, we collaborate with civil society, policy makers, industry, intergovernmental organizations, United Nations agencies and most particularly individuals, especially those belonging to different marginalised groups”. 

Principles of inclusivity, human rights, accessibility, respect for diversity and equal participation guide the research projects taking place at ALL Institute. Flagship projects include, ADVANCE CRT, AT 2030, ERC Project DANCING, Digital Wealth, Global Collaboration on Assistive Technology (GATE), GoGreenRoutes, PatentsInHumans, ReCreating Europe, SHAPES, STEM Passport for Inclusion that well epitomize the ALL ethos and mission to advance accessibility, equality and human rights for all persons in a digitalising society. Two of the above projects, ReCreating Europe and SHAPES, have recently concluded, bringing together years of invaluable work while furthering and strengthening the mission and impact of the ALL Institute in the process. 

In the space of a few years, the Ideas-in-ALL blog has helped to significantly enhance the public profile of the ALL Institute. The blog complements the work of the ALL Institute and continues to raise awareness of the importance of ensuring that person-centredness, human rights and inclusivity underpins technological advancement and digitalisation in our societies. As such, the blog provides a platform for our diverse array of partners to draw attention to, and explain in straightforward terms, the importance of each research project and initiative taking place in ALL. Invaluable blogpost contributions from ALL members, external stakeholders and independent voluntary submissions, have greatly enhanced general civic interest in the work of the ALL Institute.  

We look forward to continuing to hear the voices from the wide variety of projects ongoing within the institute, alongside potential posts from those which have recently concluded or that are coming towards the end of their journey. We strive to provide learning experiences for all, so hearing from PIs and researchers working on these successful projects helps to develop best practice principles in our own research and contributes to the generation of new ideas and collaborations. As a group our aspiration is to engage more external stakeholders in the blog process, hearing from those who are directly impacted by our research and exploring the beneficial nature of what we do as an Institute. We have some exciting posts coming up from several of our ongoing projects so stay tuned.  

We appreciate your engagement with our posts as we continue to share commentary on the intersection between our principles and the wonderful research activities happening internally within the ALL Institute and externally with our partners.  ALL Institute - Maynooth University

My Experience as Project Manager of DANCING… Some Personal Reflections on the First Four Years

Research Stream: Social Lives

Author: Hilary Hooks, Project Manager, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING) Project

As the Project Manager for the ERC-funded DANCING Project, led by PI, Prof. Delia Ferri, my role has been to manage the project’s administrative and operational aspects and supporting the PI in ensuring that the project stayed on track with its key milestones.

I have endeavoured to create a robust project management framework. This involved developing a suite of tools, including a spreadsheet to track finances, another to track project activities and deliverables and another to record meetings—ensuring that we met all milestones efficiently. With a project of this scale, managing a €2 million budget requires close attention, and by working closely with other university offices, I ensured compliance with all relevant regulations. The administrative side of the project is complex and involves coordinating with multiple university offices, as well as external entities like graphic designers, filmmakers, and dance companies, the latter two through a tendering process. By managing these details, I freed up our researchers to focus on their work without worrying about the operational hurdles.

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Can Lifestyle Changes Inform New Human-Rights Based Approaches to Dementia Management, Treatment and Care?

Research Stream: Social Lives

Authors: Maria Gialama, PhD scholar and Graduate Teaching Assistant at Maynooth University’s Department of Psychology, Joanne McVeigh, Assistant Professor of Psychology, Maynooth University, Mac MacLachlan, Professor of Psychology & Social Inclusion, and Co-Director of the ALL Institute, Maynooth University and Georgios Hadjigeorgiou, Professor of Neurology, Medical School, University of Cyprus.

Dementia is an extremely common, progressive neurodegenerative condition which affects almost 55 million people worldwide. Every year, almost 10 million new cases are reported (WHO, 2024). Today, dementia is the seventh leading cause of death and a major cause of disability and dependency among the elderly. Unsurprisingly, the World Health Organization (WHO, 2019), declared dementia a public health priority, not only because of its global prevalence, but also due to its significant impact on families and health service providers. In Ireland, there are 55,000 ‘people living with dementia’ (PwD) and almost 60,000 people who provide care for someone diagnosed with the condition. Long before COVID-19, dementia emerged as a pandemic due to ageing populations and the relationship between age and the incidence of the condition (Fox & Petersen, 2013).

Continue reading “Can Lifestyle Changes Inform New Human-Rights Based Approaches to Dementia Management, Treatment and Care?”

Competition Law Enforcement in the EU and Access to Health Technologies: An Overview of the EU 2024 Competition Law Report on Pharmaceuticals and Medical Technologies – Update on Competition Enforcement in the Pharmaceutical Sector (2018-2022)

Author: Dr. Opeyemi Kolawole Post-doctoral Researcher, PatentsInHumans Project, ALL Insittute and Department of Law and Crimonology

Research Stream: Social Technologies

Competition law is pivotal in maintaining market equilibrium and safeguarding consumer welfare. In the European Union, competition law principles are enshrined in Articles 101 and 102 of the Treaty on the Functioning of the European Union (TFEU). While Article 101 prohibits the formation and enforcement of agreements that have the object or effect of distorting competition, Article 102 prevents a dominant firm from abusing its dominant market position.

Competition in healthcare services is critical to providing access to affordable medicines and medical technologies, ensuring expensive pharmaceutical and medical technologies do not significantly strain public and private finances. With their proactive enforcement of competition rules, the EU Commission and the 27 National Competition Authorities (NCAs) have been instrumental in this regard. In the recent Report on Competition Enforcement in the Pharmaceutical Sector, published in January 2024, the EU Commission provides an overview of how EU competition rules have been enforced to prevent and rectify business practices which may harm competition in the common market and consumer welfare. This article examines some of the key decisions reached by the Commission and some of the NCAs and highlights potential improvement opportunities to maximise consumer welfare.

Continue reading “Competition Law Enforcement in the EU and Access to Health Technologies: An Overview of the EU 2024 Competition Law Report on Pharmaceuticals and Medical Technologies – Update on Competition Enforcement in the Pharmaceutical Sector (2018-2022)”

‘Lived Fiction’ Goes on Stage: Reflecting on a Major Milestone for the DANCING Project and the Collaboration with Stopgap 

Research Stream: Stories / Lived Experiences 

Author: Eva Krolla Research Assistant DANCING, in dialogue with Professor Delia Ferri and Lucy Glover, Executive Producer at Stopgap Dance Company 

Image on the left shows Eva Krolla smiling and wearing white, image in the centre shows Professor Delia Ferri smiling and wearing black, image on the right shows Lucy Glover smiling and wearing navy.

On 11th April, the contemporary dance piece ‘Lived Fiction’ premiered at Dublin’s Lir Academy Theatre in collaboration with Project Arts Centre (PAC). The piece was commissioned by DANCING, a European Research Council (ERC) funded academic research project based at the School of Law and Criminology of Maynooth University. It was created by Stopgap Dance Company’s Deaf, Disabled, neurodivergent and non-disabled creatives under the lead of co-artistic director Lucy Bennett. Stopgap are a global leader of disability access in dance and are based in the UK. ‘Lived Fiction’ artistically embeds accessibility for dancers and audiences through an integrated creative access approach. 

Continue reading “‘Lived Fiction’ Goes on Stage: Reflecting on a Major Milestone for the DANCING Project and the Collaboration with Stopgap “

The ERC funded PatentsInHumans Project – Year One Project Report And Reflections!

Research Stream: Social Technologies

Authors: Professor Aisling McMahon, Principal Investigator (ERC PatentsInHumans Project) & Sinéad Masterson, Project Manager (ERC PatentsInHumans Project)

It is hard to believe that the PatentsInHumans Project has passed the one-year point having commenced in November 2022! And what a quick and busy year it was! Alongside recently publishing our Year 1 Report which gave us pause to reflect on the project, we were delighted to write this article for the IDEAS in ALL Blog to mark the first year of the project and to provide a snapshot of the research and other activities the PatentsInHumans team have undertaken during this time.

The PatentsInHumans Project:

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What Role is There for Artificial Intelligence in the Assessment of Neurodiversity?

Research Stream: Social Technologies

Author: Emily McConway, Undergraduate Intern in Psychology, Maynooth University and Mac MacLachlan, Professor of Psychology & Social Inclusion, and Co-Director of the ALL Institute, Maynooth University

Early assessment and intervention are vital in facilitating positive developmental and behavioural outcomes for children with neurodevelopmental conditions. Early intervention has a positive long-term effect on both autistic children and their caregivers. The current process of assessing the needs of children with possible autistic traits focuses on the use of behavioural clinical diagnostic instruments such as Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R). Both instruments require direct clinician-to-child observation and can take hours to administer and score. In many countries, long waiting lists, coupled with social, economic and geographic barriers hinders timely assessment of neurodiverse children. The ALL Institute is interested in pragmatic ways to streamline access to services, including assessing a person’s needs for services and supports.   

Continue reading “What Role is There for Artificial Intelligence in the Assessment of Neurodiversity?”

Equality in a Digital Future? Ensuring Access to Assistive Technology in Third-Level Education

Research Stream: Social Technologies

AuthorMatthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning (ALL) Institute , Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)

Supporting universal and consistent access to Assistive Technology (AT) at third-level education within Higher Education Institutions (HEIs) in Ireland represents a critical milestone to achieving equal opportunities for persons with disabilities.

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