Accessibility – Ideas in ALL

Intellectual Property Injunctions over Health-Related Technologies: Balancing Patient Interests and Intellectual Property Rights

Research Stream: Social Structures

Author: Sharon Adedapo Research Assistant, PatentsInHumans Project, ALL Institute and Department of Law and Criminology

There are a range of different types of intellectual property rights (IPR), including patents which offer protection over inventions, copyright protection which can be used to offer protection to literary or artistic works, and trademarks which can be used to protect for example, certain commercial symbols, images associated with a product etc. There are also various justifications for different types of IPRs, however, in the case of patent rights a key rationale often relates to how such rights can offer an incentive to inventors to develop new inventions by enabling such inventors to gain recognition or financial benefits from their work. For instance, patents enable rightsholders to develop a financial return from a patented technology because patents are exclusive rights (granted for a minimum of 20 years). When granted a patent means the rightsholder can control various aspects such as the use, production, and sale of their inventions for commercial purposes. If others wish to use that patented technology for commercial purposes, they must seek permission or a license from the rightsholder, which is typically granted in return for payment or other exchange.

Pharmaceutical worker in gown, mask and gloves, preparing a large silver machine for work in pharmaceutical factory. Image credit: iStock — Image credit: iStock

Patents and Health

Patents are often seen as particularly significant in the context of health technologies, and within the pharmaceutical sector. This is largely due to the fact that the research and development process for new health-technologies can take several years, and is a costly process that requires significant investment. Therefore, it is sometimes argued including by industry that patents and other IPRs are a key incentive for such investment. Having said this, patents and other IPRs can also have a considerable impact on access to health-technologies , including medicines, vaccines, and tests. Accordingly, while patents have an important role in the healthcare sector, a careful balance is needed in relation to considering their potential incentivising role alongside their potential impact on access to health-technologies.

Injunctions as a Remedy to Patent Infringement

Where rightsholders of the patent perceived there has been an infringement of their patent right, they may seek to enforce these rights against the infringer. One legal tool for enforcing a patent is to seek an injunction which is an equitable remedy that is issued at the court’s discretion. There are various types of injunctions, but the two main types that will be discussed in this article are interlocutory/interim injunctions and perpetual/permanent injunctions. Interlocutory injunctions are granted at the early stages of a court case to maintain the situation until the full trial. Perpetual injunctions are granted at the conclusion of the legal proceedings and permanently prohibit a party from engaging in a specific action. In the patent context, for example, an injunction could be applied for seeking a legal order to prevent the alleged patent infringer from continuing to carry out the alleged infringing act. For example, if a company, A, is producing a medicine and that medicine is found to be an infringement of company B’s patented medicine, company B could seek an injunction to stop the production of the infringing product.

Balancing IPRs and Patient Interests: Tailored Injunctions & Patent Infringement

However, such scenarios give rise to difficult questions where the patented product is a health-technology. For example, imagine a situation where a medical device which is being used to improve patients’ condition is found by the court to be infringing another party’s IPRs and that other party seeks an injunction against the infringer to halt their use/production of that technology. Should the courts grant an injunction to immediately cease its use which could impact the availability of a suitable device for other patients/procedures? What happens if there are no alternative suitable devices available for patients in such cases? Such scenarios give rise to a range of potential legal issues, including tensions between upholding rightsholders IPRs and the implications this may have for patients or health-care systems.

In some cases, courts have sought to balance such interests, including by tailoring the injunctive relief grant. An injunction is tailored when the court modifies the court order to fit the particular circumstances of the case and the parties involved. It can be done, for example, by prohibiting or requiring certain actions, setting a time frame, or delaying the granting of the injunction. Such scenarios were recently considered by English courts in the cases of Edwards Lifesciences v Boston Scientific [2018], and Evalve v Edwards Lifescience [2020].

Recent English Cases – Tailored Injunctions, Patent Infringement and Health-Technologies

These two recent English cases on this topic provide an illustration of some of the issues at stake. First, in Edwards Lifesciences v Boston Scientific [2018], Boston Scientific applied for an injunction against Edwards Lifesciences to prevent the continued sale and use of Edwards’ Sapien 3 transcatheter heart valve. In deciding on whether to grant the injunction, the court considered the impact of granting this on patients who were using the Sapein device. Ultimately, while the court held that Edwards device infringed Bostons’ patent, they acknowledged that a certain group of patients relied on the Sapien 3, and thus tailored the injunction. The court issued a 12-month stay on the injunction to give clinicians time to retrain alternative devices that could be used (paragraphs 22-31). Additionally, the court allowed patients with no other appropriate alternative to continue using the Sapien 3 for as long practitioners determined were necessary until a suitable alternative was available (paras 52-54 and 68-71). This could be seen as a reflection of the court using the proportionality principle to weigh public interests involved and private interests in protection of IPRs.

More recently, the role of public interest in the issuance of injunctions was considered by the English courts in Evalve v Edwards Lifescience [2020]. In this case, Evalve was the owner of patents for the MitraClip device, which is used to treat mitral valve regurgitation, and the High Court held that Edwards’ PASCAL device infringed Evalves’ patent. Edwards argued that an injunction would harm patients who could only rely on their PASCAL device. The court acknowledged that, in certain rare circumstances, the public interest can justify the denial of an injunction, specifically if the infringing product is the only effective treatment available for certain patients (paras 73-91). In this case, the court held that the MitraClip was generally suitable and thus the injunction was granted. However, the court tailored the effect of a full injunction by creating an exception where it would not apply for specific cases when the PASCAL device was the sole device available for certain patients.

Conclusion

The enforcement of patent rights in the healthcare sector via private law remedies, including questions around the grant or refusal of injunctions, highlights tensions which can arise in certain contexts between balancing the need for protection of IPRs and also ensuring access to life-saving treatments. While patents are an important tool for fostering medical and pharmaceutical advancements, in certain contexts their strict enforcement can have unintended negative consequences for patients. The recent English court cases demonstrate that courts are increasingly recognising this tension, leading to more nuanced approaches which consider public interests on a case-by-case basis. A flexible approach to IP enforcement by tailoring injunctions, delaying enforcement, and allowing exceptions in cases of life-saving treatment can present a useful avenue for balancing IP rights with public health needs.

As part of the ERC PatentsInHumans project, together with Prof Aisling McMahon (PI), we are currently conducting research on injunctions as a remedy for IP infringement and the scope of courts to consider patient and other third-party interests in the health context, including how such issues are being addressed by the recently established unified patent court.

You can find out more about the PatentsInHumans project, including ongoing work at: https://patentsinhumans.eu/

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This research is funded by the European Union (ERC, PatentsInHumans, Project No. 101042147). Views and opinions expressed are however those of the author only and do not necessarily reflect those of the European Union or the European Research Council Executive Agency. Neither the European Union nor the granting authority can be held responsible for them.

30 years of the TRIPS Agreement: The Need to Balance Intellectual Property Rights with the Right to Health

Research Stream: Social Structures

Author: Lauren Kane, Research Assistant, PatentsInHumans Project, ALL Institute and Department of Law and Criminology

World Intellectual Property Day took place on the 26th of April 2025. On this day, many people celebrate the role of intellectual property rights (IPRs) such as patents, trademarks, industrial designs and copyright, in incentivising creativity and innovation. Indeed, IPRs have an important role in incentivising innovation, in certain contexts. For example, patents allow the rightsholders an exclusive right over the patented technology which they can use to develop new health technologies to generate an income stream from that technology. In this way, such rights are often seen as incentivising the development of new medicines. However, in this context, it is also important to reflect on the broader impacts of certain uses of IPRs on society, including their potential impact on access to technologies (such as medicines) in the healthcare context. Such issues are particularly timely in 2025, as this year marks the 30^th anniversary of the coming into force of the World Trade Organisation’s Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS) Agreement, an international agreement which provides for uniform minimum standards in relation to the protection and enforcement of intellectual property rights.

Intellectual Property Rights in the Healthcare Context

Intellectual Property rights, including patents, can have a significant impact for access to health-technologies. For context, a patent is a type of intellectual property right which confers the rights-holder an exclusionary right to control key aspects, including the sale, supply, production of their patented technology for commercial purposes, generally for a period of twenty years.

In practice, for health-technologies, patents can provide rights-holders with legal avenues to prevent others from developing an equivalent (generic) version of a patented medicine during this period and therefore, rightsholders have significant power to control competition. This, in turn, can enable rightsholders to command high prices which in some cases can be greatly in excess of production costs. It is acknowledged that such prices are often justified as necessary to compensate for the investment costs of research and development (R&D) of developing new and more effective drugs. Nonetheless, in such contexts, such prices (and IPRs can be a key role in this) can potentially impede access to medicines, with implications for healthcare and the right to health.

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What is the Human Right to Health?

A human right to health was first proclaimed at the global level within the World Health Organisation (WHO) Constitution, which was adopted in 1946 and came into force in 1948. The right to health is now articulated in various international and regional instruments, and over 100 national constitutions worldwide.

A key provision in this context is Article 12 of the International Covenant on Economic, Social and Cultural Rights 1966 (ICESCR), which provides that:

“The States Parties to the present Covenant recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.”

States Parties that have ratified the Convention are required to respect, protect and fulfil the right to health, through progressive realisation, and within the limits of their individual resources. Additionally, the Committee of Economic, Social and Cultural Rights, the UN body responsible for monitoring the implementation of the ICESCR, has also confirmed under General Comment 14 (2000) that a key component of the right to health is that States must ensure accessibility of medicines, including economic accessibility. However, the right to health may be negatively impacted by patents, for example, if medicines (or other health technologies) necessary for health are marketed at a price which significantly impedes access, which can create conflict between the human rights and intellectual property regimes.

Conceptual image representing The state of health in Europe. Thermometer and medicines against Europe political map — Credit iStock and alexandrumagreen

The Impact of the TRIPS Agreement

Moreover, since the TRIPS Agreement came into force on the 1^st of January 1995, the tensions arising in the relationship between human rights and intellectual property rights have arguably been heightened, and these tensions have been the subject of significant discussion and debate. Prior to the establishment of the TRIPS Agreement, countries used a diverse range of approaches to intellectual property protection, including tailoring their individual level circumstances to meet the health needs of populations. For example, pre-TRIPS era, developing countries could acquire equivalent, generic medicines from countries that did not offer patent protection to pharmaceuticals at that time, such as India. Under the minimum standards set down by TRIPS, this is longer possible as all TRIPS Contracting States must ensure protection of IPRs over all fields of technology. Consequently, such States have limited discretion under TRIPS over IP protections, and for this and other reasons, LMICs may struggle to provide access to expensive patented medicines for those who require them.

Some examples of the impacts IPRs can have on access to health in the health emergency context are discussed in detail elsewhere and include the HIV/AIDS crisis during the 1990s/2000s, and more recently, the COVID-19 pandemic. Increasingly, such impacts are also evident in everyday healthcare contexts, particularly in relation to novel medicines which treat cancer and rare diseases. This means that high costs are increasingly posing access issues for LMICs and high-income countries (HICs). While it is important to acknowledge that IPRs are not the sole factor contributing to such costs, how such rights can be used arguably represent a key element contributing to this.

The TRIPS Agreement did provide for some exceptions or ‘flexibilities’ to better enable developing countries to apply TRIPS in a manner which allows them to effectively balance the protection of IPRs with public health needs, affirmed by the 2001 Doha Declaration. For instance, a compulsory license is one type of flexibility that can issued by national States to allow for cheaper, generic production of a patented health technology in certain circumstances. Such measures have traditionally faced several limitations, including but not limited to the threat of potential retaliation in the form of trade sanctions against States that have utilised such flexibilities. Such issues and other factors can deter States from using TRIPS flexibilities. Nonetheless, the ability to use such measures when needed to provide access to health technologies is important to better allow States to deliver on access to health and to fulfil States human rights obligations.

To conclude, as we reflect on IPRs and World IP Day in 2025, alongside some of the benefits of IPRs for society, there is also a need for greater consideration of the potential human rights implications of how IPRs can be used in the healthcare context. There is a need to ensure the incentivising function of IPRs is balanced in a manner which appropriately takes patients’ need for access into account. Such issues, including the role of the right to health, and the extent to which this right can offer an avenue for greater accessibility of patented health-technologies is a key theme explored within the ERC PatentsInHumans Project at Maynooth University.

With Prof Aisling McMahon (Principal Investigator, ERC PatentsInHumans), we are currently examining the impact of IPRs on the accessibility component of the right to health. We are also developing a deeper analysis of the role and scope of the right to health to be used at a national level by individuals and States to facilitate a greater balance between IP rightsholder interests and patients’ access to medicines. The theme of ‘accessibility’ including of health technologies, aligns with a core value of the ‘Assisted Living and Learning’ (ALL) Institute where this project is co-hosted with the School of Law and Criminology, Maynooth University.

You can find out more about the PatentsInHumans project, including ongoing work at: www.patentsinhumans.

The European Heritage Label and Persons with Disabilities

Research Stream: Social Structures

Author: Lazar Stefanovic, PhD, Research Assistant at ALL Institute, School of Law & Criminology, Maynooth University

The European Commission published the latest European Heritage Label (EHL) Monitoring Report in April 2025, coinciding with the announcement of the pre-selected EHL sites for 2025. This provides an opportune moment to assess these developments through the lens of accessibility for persons with disabilities at European heritage sites, which is the purpose of this blogpost.

The EHL promotes the shared cultural identity of European Union (EU) Member States. It started as an intergovernmental initiative in Granada in 2006, before being formally established with the Parliament and Council Decision in 2011. Its main goals are to foster a sense of European belonging, promote respect for cultural diversity, and encourage dialogue between different cultures (Lähdesmäki et al., 2020). The underlying aim of such actions is to contribute to the European integration, while respecting the cultural diversity of its Member States. This interplay between respecting and promoting the Member States’ cultural diversity and foregrounding a shared European identity is embedded in Article 167(1) of the Treaty on the Functioning of the European Union (TFEU). The EU’s limited competence in culture stems primarily from Article 167 of the TFEU, which prescribes a supplementary and facilitating role for the EU in the field of culture. The legal basis for the EHL is Article 167(5) TFEU, as the EHL is an incentive measure in the sphere of culture, implemented in accordance with the principles of subsidiarity and proportionality stipulated in Article 5 of the Treaty on European Union. Despite its limited competence in the field of culture, the EU adopts a multifaceted approach that reflects its three main roles in the cultural sphere: funding actions with European added value; funding and organising actions that enhance the sense of European belonging, such as the EHL; and making cultural policy choices in the internal market (De Witte, 2024). The EHL is the embodiment of one of the three major roles of the EU outlined by De Witte.

The Decision establishing the EHL is emphatic about ‘increasing and/or improving access for all’ as one of the crucial elements of sites involved in this action (Art. 3 of the Decision). Even though the Decision does not mention persons with disabilities specifically, the EHL sites should make every effort to ensure the accessibility for persons with disabilities in light with the EU general commitments to promote disability rights stemming from the Charter of Fundamental Rights (CFR) and the UN Convention on the Rights on the Rights of Persons with Disabilities (CRPD), concluded by the EU in 2010. In that regard, the EU is obliged to foster the social integration of persons with disabilities and ensure accessibility in the implementation of EU law. Accessibility of cultural goods and services, including cultural heritage, is tightly linked to social inclusion and participation in the community, as well as to the right to cultural participation. The former is mandated in Article 26 (integration of persons with disabilities) CFR, and the latter in Article 30 (participation in cultural life) CRPD. Additionally, Article 9 CRPD obliges parties to ensure accessibility to a wide array of facilities and services available to the public, such as heritage sites. Currently several pieces of EU legislation, including the European Accessibility Act, mandate accessibility of some cultural goods and services. In fact, accessibility provisions are scattered around different pieces of EU legislation creating a ‘jigsaw’ (Ferri, 2023), and is mainstreamed in other initiatives such as the EHL.

The latest EHL report examined whether heritage sites continue to meet the criteria for their EHL status. The review focused on two aspects of site functioning – action plans developed by the sites’ administration and their organisational capacities. Notably, for the purpose of this post, under the organisational capacity section, the reviewers also noted the sites’ accessibility for persons with disabilities. However, the methodology outlined in the EHL Report does not clearly indicate whether or how accessibility for persons with disabilities is weighted. Furthermore, most of the sites reviewed include an indication of their accessibility to persons with disabilities, although not all of them do. In several instances, however, reviewers only mention accessibility in general terms, such as public transport connections or availability of information in various languages of EU Member States (e.g. Archaeological Area of Ostia Antica), without specifically addressing accessibility for persons with disabilities. The absence of information on accessibility for persons with disabilities for some of the sites likely reflects insufficient prioritisation in the review process.

Looking more closely to the assessment included in the report, some of the sites were reported to be accessible to persons with physical impairments but not to persons with sensory or mental impairments (e.g. Aleksandrovo Tomb). Other sites are located in difficult terrain or even underwater (e.g. Azores’ Underwater Cultural Heritage), which significantly reduces the possibility for interventions to ensure access for persons with various disabilities. Furthermore, the report captures instances of tension between the preservation of sites and accessibility for persons with disabilities (e.g. Olomouc Premyslid Castle). Other reviews emphasise that accessibility has been improved through bespoke staff training on how to accommodate visitors with disabilities (e.g. Archive of the Crown of Aragon). Many of the sites improved their accessibility by leveraging digital accessibility and incorporating bespoke features into their websites, especially during the COVID-19 pandemic. The review also noted the use of advanced technology to ensure library access for persons with disabilities (General Library of the University of Coimbra).

Turning now to the 21 newly pre-selected sites, information on accessibility is limited. A review of their websites reveals that, currently, most of them provide little to no detailed information on the accessibility of the site. Positive exceptions include the Styrian Armoury in Austria, which clearly describes accessibility features, and Krzysztof Penderecki – European Centre for Music in Poland. Similarly commendable from a disability rights perspective is the St Paul’s Catacombs site in Malta, which offers detailed accessibility information and digital 3D reconstructions for otherwise inaccessible areas.

While many European heritage sites have improved accessibility significantly, others still have much to do. To comply with obligations under Article 30 CRPD and better fulfil Article 26 CFR, the EHL review process should place greater emphasis on accessibility for persons with disabilities. This can be achieved by requiring a prioritization of accessibility for persons with disabilities a mandatory criterion for EHL sites. When carrying out the periodic external and independent evaluation of the EHL, provided for in Article 18 of the Decision, clear recommendations should be issued in relation to increasing access to EHL sites for persons with disabilities. Further, the European Heritage Label Bureau – which has been operating EHL sites’ umbrella organisation to support the development of a “community of practice” – should release practical recommendations on a regular basis, and ensure systematic follow-up on how sites meet accessibility criteria. This focus would also encourage broader EU-wide compliance, ultimately ensuring that heritage sites are genuinely inclusive for all visito

Lazar Stefanovic, PhD, Research Assistant at ALL Institute, School of Law & Criminology, Maynooth University

New Voices, Same Mission: Meet the new Editors joining Ideas in ALL

Research Stream: Editorial & Stories/Lived Experiences

Authors: Rachel McGettrick, Sharon Adedapo & Lauren Kane

Dear readers of Ideas in ALL,

As new editors joining the blog, we are extremely happy to take on this position. As we take up our role, we will strive to maintain the excellent standard and energetic impetus attained by our fellow editors and predecessors. The blog has become an influential academic commentary on contemporary physical, social, political, and conceptual dimensions of society in the twenty-first century.

Each of us wish to add a personal note below on our motivation and commitment to this blog, so that you get to know us better!

Rachel McGettrick

I’m Rachel and I am so excited to join the amazing Ideas in ALL team! I am a PhD researcher who first joined the ALL Institute in 2022 during my undergraduate degree in psychology, working as a research intern with the STEM Passport for Inclusion. This is an initiative led by Professor Katriona O’Sullivan that empowers young women from underrepresented backgrounds to pursue STEM education. This experience sparked my love for research and helped me see a future for myself in such a meaningful environment. Now, as a PhD researcher at Maynooth University, I feel incredibly fortunate to continue my journey within the ALL Institute—a space dedicated to inclusion, accessibility, and meaningful research impact.

Inclusion remains at the heart of everything I do. Alongside my continued work with the STEM Passport for Inclusion, I contribute to two interconnected projects – Pathways and Promote – which aim to foster a more equitable research environment, particularly for women and early-career researchers. These projects reflect the ALL Institute’s commitment to tackling systemic inequalities and ensuring that research is shaped by diverse voices. I am also involved with the Maynooth Access Programme (MAP), which encourages under-represented groups to enter third level and provides these groups with support through their time at Maynooth. As I embark on my PhD journey under Professor O’Sullivan’s supervision, I am exploring the impact of parental alcohol misuse (PAM) on children in Ireland. This research seeks to highlight an often-overlooked issue and develop an intervention to support these vulnerable children – in line with the ALL Institute’s broader mission, contribute to evidence-based policies and person-centred support systems.

Sharon Adedapo

I am delighted to join Ideas in ALL as part of the team! I recently joined the PatentsInHumans project as a Research Assistant, working under Professor Aisling McMahon at the ALL Institute. I completed my Undergraduate degree in Law and Business from Maynooth University in 2023 and recently completed my Master of Law (LLM) in 2024.

The PatentsInHumans project bridges the gap between bioethics and patent law, exploring how patents over health-related technologies, such as medicines, medical devices, gene editing techniques, and neurotechnology, interact with fundamental ethical considerations. The ultimate aim of the project is to reimagine European patent decision-making to better integrate bioethical principles.

What drew me to Ideas in ALL is the commitment to inclusive, accessible, and interdisciplinary research. My background in Intellectual property law, human rights, and technology has fuelled my interest in how emerging health technologies are governed, and the ethical challenges they present. I look forward to bringing these perspectives to the blog, helping to share research that sparks conversation, promotes accessibility, and drives meaningful change.

Lauren Kane

My name is Lauren, and I recently joined the ALL Institute as a Research Assistant on the ERC funded PatentsInHumans project, led by Professor Aisling McMahon. PatentsInHumans aims to explore the bioethical implications of how patents are used over health technologies related to the human body, with a view to reimagining the European patent system to adopt a more person-centred approach.

My interest in this area was sparked by the Myriad Genetics case, which related to an (ultimately successful) challenge to the patenting of genetic mutations which predicted a significantly elevated risk of breast and ovarian cancer (BRCA1 and BRCA2). Essentially, these patents were being used in such a restrictive manner that diagnostic testing could only be provided through Myriad Genetics, and at a significant cost which prevented access for many women. As someone who had personally undergone BRCA testing, this case made me consider how fortunate I had been to obtain access, and how I may have felt and the impact it could have had if this had not been possible. This really opened my eyes to the impact that the manner in which patents related to the human body are used can have over people’s health and motivated my interest in this area of research and social justice. As such, I was delighted to have the opportunity to join the PatentsInHumans team and Ideas in ALL Blog team. The core values of the Ideas in ALL Blog, such as inclusivity, accessibility, respect for diversity and participation really resonate with me. I feel excited to be part of the Ideas in ALL Blog team as I am passionate about accessibility and greatly value the opportunity to contribute to the blog and participate in the dissemination of interdisciplinary research which is accessible to all.

We are all excited to join this team and contribute to the values and mission of the Ideas in ALL blog. All three of us look forward to bringing our different experiences and areas of interest together to foster new collaborations and inspire innovative insights in both this blog and the ALL Institute as a whole. If you are interested in contributing to the Ideas in ALL Blog, please feel free to get in touch via email at ideasinall@mu.ie.

Breaking Barriers: New Tools to Make Culture More Accessible

Research Stream: Social Structures

Authors: Elodie Makhoul & Alessia Palladino, Research Assistants, ERC DANCING, Maynooth University

On Thursday, 13 March 2025, the ERC DANCING Project published two complementary outputs, a Toolkits for Cultural Organisations and a Resource List, both geared at cultural organisations and professionals in the Cultural and Creative Sector (CCS). These outputs aim to support the CCS in advancing cultural participation of people with disabilities, both as audience and professionals.

These outputs contribute to DANCING’s overarching aim of challenging the cultural exclusion often faced by people with disabilities and advancing cultural diversity and inclusivity across the European Union (EU). In particular, the Toolkit and the Resource List aim to raise awareness about barriers faced by persons with disabilities in the cultural domain and to highlight how cultural organisations can ensure inclusion and accessibility and ultimately inspire societal change.

The deployment and publication of this Toolkit and Resource List stem from DANCING’s empirical research and from a close collaboration with persons with disabilities and cultural professionals.

One of the main reasons underpinning the publication of these outputs is the recurring ‘loss’ of good practices. The empirical research undertaken in DANCING showcases that one of the challenges often faced by cultural organisations is that good practices developed remain isolated and often are ‘forgotten’. This happens because good practices are developed within distinct projects and are discontinued at the end of the project, or rely on the distinct expertise of certain employees, artists or cultural workers, and run their course following the exit or retirement of such experts. Further, while there are several good practices across the EU, there is no mutual learning. These outputs aim to address and counter these challenges and to provide guidance and useful information to cultural organisations, with a view to support the creation of a community of practice and the sharing of breakthrough practices.

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The Toolkit is dedicated to support cultural organisations in their inclusivity journey towards ensuring greater accessibility in cultural spaces and enhancing diversity. The Toolkit provides cultural organisations with key information and recommendations to improve and advance the inclusion and cultural participation of people with disabilities in the CCS both as professionals and as an audience. This Toolkit raises awareness and improves the reader’s understanding of what facilitates cultural participation of people with disabilities and how to foster cultural diversity. It also presents all the preliminary information required to successfully develop an accessible and inclusive disability policy. By prioritising accessibility and inclusion, cultural organisations can reflect the inherent diversity of society, and reimagine the cultural landscape to fully involve people with disabilities both as audience and cultural professionals.

The second output is a non-exhaustive Resource List showcasing existing initiatives improving the cultural participation of people with disabilities as well as the relevant fundings making these efforts possible, both at the EU level and at the local level in all the EU Member States and in the UK. This Resource List developed by DANCING complements the Toolkit. By highlighting relevant projects, initiatives, toolkits, reports and other resources produced by other projects or organisations advancing the cultural participation of people with disabilities, it aims to foster collective learning and knowledge sharing. Further, this Resource List can also support a better understanding of suitable funding streams which could enhance inclusion of people with disabilities in the CCS.

Advancing the cultural participation of people with disabilities requires reaching a large and diverse body of stakeholders, from cultural institutions to organisations of persons with disabilities and from policymakers to civil society. Hence, DANCING has developed tailored tools and resources designed to meet the specific needs of various stakeholders who have the potential to contribute to greater inclusion. By customising tools and strategies for each of these stakeholders, DANCING hopes to support the development of meaningful change that is both practical and impactful. The Toolkit for Cultural Organisations and the Resource List are developed within DANCING’s objective of creating ‘Tools for Change’. While DANCING – as an ERC funded project – has primarily a scholarly focus, it has also developed tools addressed to a wider audience. This approach aligns with research findings that highlight the importance of raising awareness of academic blue-sky scholarship (Linden, 2008) and of ‘democratising’ academic advancements. This approach also aligns with the ethos of the UN Convention on the Rights of Persons with Disabilities and ensures that people with disabilities can reap the benefits of cutting-edge research.

On the whole, these ‘Tools for Change’ developed by DANCING advance the dissemination and enhance the impact of the project, reaching specific stakeholders and ultimately improving the right to cultural participation for people with disabilities.

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

‘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 11^th 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.

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:

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.

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

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)

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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