HRCI News, Media & Blog - HRCI News, Media & Blog

HRCI blogs posts are mainly written by CEO, Dr Avril Kennan, with occasional guest posts by invited collaborators. You will also find links to news articles and radio appearances featuring HRCI in this section.

Announcing the successfully funded HRCI/HRB Joint Funding Scheme Projects 2026

We are truly delighted to announce that eight HRCI member charities are supporting 12 innovative health research projects through the latest round of the HRCI-HRB Joint Funding Scheme.

Congratulations to the Irish Thoracic Society, Fighting Blindness, Muscular Dystrophy Ireland, Parkinson’s Ireland, Breakthrough Cancer Research, Irish Cancer Society, Cystinosis Ireland & Epilepsy Ireland.

Run in partnership with the Health Research Board (HRB) since 2006, this unique scheme gives HRCI members the opportunity to match their own investment in research with HRB funding, supporting research that matters to their communities. With no known international parallels, the scheme is a powerful example of partnership between health research charities, researchers, patients and a national research funder.

It has now supported 177 research projects, with a total investment of more than €31 million. The scheme has been particularly important for rare disease research and is also an excellent example of patient and public involvement (PPI) in action.

Find a full listing of all the successful projects here.

The Health Research Board has released a news piece which you can find here

Blog Post - Has the conversation about research and science shifted in Ireland?

March 26, 2026

I had the privilege of representing HRCI at two events yesterday – the launch of the All Ireland Science Media Centre and the opening of the new Royal College of Surgeons in Ireland (RCSI) building at 118 St Stephen’s Green.

I’m pretty sure that whoever coined the phrase “the land of saints and scholars” wasn’t thinking about scientists. And for a long time, we haven’t had a strong tradition of bringing research and evidence into public conversation in Ireland. But something is changing.

The Science Media Centre is designed to get expert voices into the media quickly, providing evidence-based commentary when stories are unfolding. And the new RCSI building includes a dedicated public engagement space, the Humanarium, opening up health science and medical research to public audiences in a tangible and accessible way.

These may seem like stand-alone developments but I have a sense that they signify something much bigger: a recognition that research and science only deliver their full value when people understand it, trust it, and can see its relevance to their lives.

This is something we have been thinking about for some time in HRCI – Health Research Charities Ireland. Through our management of the Irish Health Research Forum, we have consistently highlighted the importance of transparency, communication and inclusion in research. Our 2024 Forum on the theme of public trust in research was very clear: without trust, people will reject, misunderstand or underuse the research that can save and enhance their lives. One of the strongest messages from that event was that communication is not an ‘add-on’ to research but central to it. For this reason we called for investment in the Science Media Centre at the time.

Hopefully our advocacy in HRCI has been a contributing factor, but what we are seeing now is likely the result of multiple forces coming together. There is a growing recognition at Government level of the role of research and innovation, both for economic benefit and societal well-being. The establishment of the Department of Further and Higher Education, Research Innovation and Science; the creation of Research Ireland; and a stronger focus on research within the Department of Health are all drivers. So too are wider global factors. The current scale of misinformation and disinformation in the US is unnerving. Ireland’s reliance on a life sciences sector dominated by multinational companies, which comes with limited domestic ownership of high-value IP and innovation, has also spurred the Government to action.

If we are serious about Ireland becoming a leader in life sciences and innovation, we also need to be serious about becoming a ‘research-engaged society’. That means:

research that is open and transparent
people and communities involved in shaping research
strong, trusted channels for communicating evidence

The HRCI member charities bring particular insights in this regard. They see all the time how people want to engage with research when it is made accessible and relevant, how trust is built when people are involved rather than just informed, and also know how quickly that trust can be lost if communication is unclear, inconsistent or absent. They are both enthusiastic about, and well placed to support, new approaches to public engagement in research.

Taken together, exciting initiatives like the Science Media Centre and the Humanarium signal a shift towards a more open and engaged research culture in Ireland. The real opportunity now is to build on that momentum. To ensure that communication, engagement and trust are not side projects, but core parts of how research is done and supported. And perhaps then the land of saints and scholars will take on an expanded meaning.

Dr Avril Kennan

Research Priorities from HRCI Member Organisations – For Researchers Interested in New Foundations

As part of our continued efforts to support collaboration between researchers and civil society organisations, we are sharing a set of research priorities from some of our member organisations who are interested in partnering on New Foundations grant applications as civil society partners.

These charities represent a diverse range of health areas and bring valuable expertise, lived experience, and a strong commitment to impactful research. Below you’ll find the organisations’ summaries, priority areas, and relevant contact details in the attached document. We encourage any researchers interested to reach out directly to any organisation whose priorities align with their expertise or interests.

🔷 Organisation: Retina International

About: Retina International is a global patient-led membership organisation. As pioneers in patient-driven research for five decades, we strive for excellence in developing validated education platforms and effective participation that can lead to better outcomes through innovation. Our objective is to promote retina research through engagement, education, and evidence-based advocacy tools.

Key Contact: Ellen Moran – ellen.moran@retina-international.org

Research Priorities:

Research the psychological wellbeing of people living with inherited retinal degenerations using validated questionnaires
Systematic review and meta-analysis of the prevalence of mental health issues in age-related macular degeneration (AMD)
Exploration of the association between mental health and AMD using longitudinal datasets
Research the status of social isolation and loneliness among patients with AMD using validated questionnaires

More Information: Retina International Research Resources

🔹 Organisation: 22q Ireland

About: 22q Ireland’s mission is to provide information and knowledge on 22q11DS to support individuals and families on their journey. The organisation advocates for a holistic care model that supports patients across medical, educational, and social domains, ensuring they are treated as individuals.

Key Contact: Wesley Mulcahy – wmulcahyot@gmail.com

Research Priorities:

Lived experiences and perceptions of families regarding current care coordination for 22q11 Deletion Syndrome.
Impact of care coordination practices on family burden and empowerment.
Perceived access to specialised services and management of transitions (e.g. paediatric to adult care).
Families’ recommendations for improving care coordination, including evaluation of tools such as healthcare passports.

More Information: HSE 22q11DS Paediatric Care Pathway

🔹 Organisation: Disability Federation of Ireland

About: We are a pan-disability federation with over 100 member organisations across Ireland. We work collaboratively to advocate for a more equal society for people with disabilities at local, national and international levels.

Key Contact: Fleachta Phelan – fleachtaphelan@disability-federation.ie

Research Priorities:

Landscape of energy poverty and disability in Ireland
Analysis of existing supports and identification of gaps
Evaluation of targeted vs universal responses to energy poverty
Examination of heating supplement and profiles of Disability Allowance recipients
Case studies on additional costs (e.g. for running medical equipment)
Assessment of housing and insulation issues
Link between poor housing, energy poverty, and health outcomes
Critique of supports and take-up

More Information: DFI Publications

🔹 Organisation: Family Carers Ireland

About: Family Carers Ireland is the national charity supporting 500,000+ family and young carers who care for children or adults with additional needs, disabilities, chronic illness, mental health challenges or frailty. We aim to recognise, support and empower family carers, and advocate for policies that improve their quality of life.

Key Contact: Ann Leahy – aleahy@familycarers.ie

Research Priorities:

Informing better policy, practice and support services (e.g. respite) for family carers.
Understanding how government and employers can help carers balance paid work and caring.
Exploring the economic impact of caregiving.
Investigating the wellbeing and quality of life of family carers, including specific groups.
Recognising and valuing the contribution of carers, and their inclusion in community life.

More Information: Family Carers Ireland Research

🔹 Organisation: Adelaide Health Foundation

About: The Adelaide Health Foundation (AHF) is a voluntary charitable organisation committed to advancing and promoting equitable access to healthcare services and education in Ireland. Based in Tallaght University Hospital (TUH), we support the hospital and the local community by investing in projects that will improve services for patients.

Key contact: Victoria Boughton – research@adelaide.ie

Research priorities:

Research on the contribution primary care centres have on patient experience.
Research on women’s health services within the Dublin 24 community.
Review of social prescribing services in the Dublin 24 area with recommendations to enhance awareness and uptake.
Review of mental health and stress management supports in Dublin 24 with recommendations to improve visibility and access.
Review of adolescent supports in Dublin 24 with recommendations to promote resilience and pro-social behaviours.

Review of community volunteering opportunities in Dublin 24 and recommendations to promote engagement

Note: PPI is an essential element of any AHF research project design.

More information: Adelaide Health Foundation

HRCI Opinion - Programme for Government 2025: What does it mean for health research?

The recently published Programme for Government 2025 lays out Ireland’s vision for the future, with some commitments to research and innovation in the area of health. It includes a number of ambitious goals, with promises of investment in clinical trials, cutting-edge treatments, and enhanced support for researchers. Indeed, the recently formed National Clinical Trial Oversight Group has shown a tangible commitment to an improved era for health research.

Strong promises to build on

An increasing recognition of the importance of health research (including medical research, social care research and life sciences etc.) is clear in parts of the Programme, which states that “research and innovation are key drivers of economic progress, but also essential to improving our health and social wellbeing.” We particularly welcome initiatives that align with our longstanding calls, including increased investment in genetics and genomics, better support for rare diseases, improving Ireland’s track record in clinical trials and the development of electronic health records. The focus in the Programme on improving patient access to innovative treatments, particularly for cancer and rare diseases, highlights an understanding of urgent healthcare needs.

The promise to develop a National Life Sciences Strategy is very welcome. As other countries aggressively invest in life sciences, this mirrors similar ambitious pledges in the UK by the Labour Party. While the intention here is clearly for life sciences to strengthen Ireland’s economy, which they have enormous potential to do, aligning the planned strategy with wider Government initiatives in health research and involving patients and their representatives will ensure it also brings societal benefit.

Across several sections of the Programme, the new Government demonstrates a clear understanding of the importance of researchers informing policy and highlights the need for “academic and research involvement in public life”, to address societal challenges. This is very welcome, and we would also strongly encourage the Government to recognise the importance of including civil society organisations (charities, community organisations etc.) in these conversations. These organisations are the closest to societal challenges, often have deep knowledge of existing evidence and their perspectives can help ensure the success of policy.

The Programme for Government commits to funding “outstanding Irish research and innovation” and to “increase supports available to PhD or early post-doctoral students” aiming to create sustainable career paths for health researchers. Including research roles within clinical settings, such as research nurses and midwives, biobank managers etc., will be crucial to the success of these initiatives.

Furthermore, the Government reaffirms its commitment to Sláintecare and promises reforms to improve patient care. A continued focus on increasing the number of clinical trials and a commitment to publish a National Rare Disease Plan are both encouraging and the focus on rare diseases is long overdue. It is vital however that Ireland takes a cohesive approach to improving evidence-based and innovation healthcare in all areas of human health including chronic conditions, mental health, infectious diseases etc and with a focus on preventative medicine and public health. Stated plans to digitise healthcare records and to develop a national patient app will be important enablers for this.

Conclusion: Realising Government Ambitions

Many of the commitments in Programme for Government 2025 are broad, leaving scope for ministers and officials to engage with the health research community towards practical and innovative approaches. In order to make tangible the commitments made, actions should include:

Ensuring dedicated, long-term funding mechanisms for all forms of health and social care research, promoting a broad, cohesive approach which is inclusive of all conditions & health issues.

Addressing the existing gaps in health research infrastructure and taking an inclusive approach to improving researcher careers.
Resourcing the HSE Action Plan for Health Research, 2019 – 2029.

Working to foster increased patient and public involvement (PPI) in research and harnessing the potential of the charity sector to support and strengthen the ambitions.

Developing underpinning legislation and supporting structures for national research ethics committees, biobanking and patient registries.
Continuing the commitment to achieve faster clinical research set-up to ensure earlier access to cutting-edge treatments for patients and to make Ireland a more attractive location for clinical trials.

We plan to highlight a number of these areas in our forthcoming 2025 Health Research Charities Ireland (HRCI) Position Paper. We also draw attention to the recent Irish Health Research Forum Steering Group Consensus Statement which reflects the vision of a high-level, informed, and multi-stakeholder group dedicated to advancing health research in Ireland.

Ireland has the talent, infrastructure, and ambition to be a global leader in health research. By building on the Programme for Government’s promises with a cohesive plan, we can gain momentum – strengthening the economy and ultimately benefiting patients, services users and all people in Ireland.

Avril Kennan, PhD

CEO, Health Research Charities Ireland

Professor Mary McCarron wins 2024 HRCI Research Impact award for her work on transforming dementia care for people with intellectual disabilities.

Professor Mary McCarron has been recognised for her transformative work to improve the lives of people with intellectual disabilities living with dementia.

Professor McCarron was presented with the 2024 Health Research Charities Ireland Research Impact Award, on Wednesday 11^th December 2024 at a ceremony in the Mansion House, for research co-funded by The Alzheimer Society of Ireland and the Health Research Board (HRB), that has reshaped care practices and policy for the many people with intellectual disabilities who live with dementia and improving care for this often neglected group.

People with intellectual disability have an extremely high risk of developing dementia and may also develop dementia earlier and experience significant impacts on their independence from relatively small changes. Despite this they have been largely ignored and unsupported.

Professor McCarron and her team identified 5 ‘pillars’ critical to support for people with intellectual disability – 1. living well with dementia; 2. sense of place and community; 3. dementia awareness and skills; 4. supportive infrastructure; and 5. promoting autonomy. This led to the production of a set of guidelines, which, with support from the National Dementia Office, the HSE’s National Clinical Programme for People with Disability, the National Intellectual Disability Memory Service (NIDMS) and The Alzheimer Society of Ireland, are set to influence dementia care nationwide, ensuring a lasting legacy of improved quality of life.

Speaking at the award ceremony, Prof McCarron, who is a Professor of Ageing and Intellectual Disability at the School of Nursing and Midwifery, Trinity College Dublin, said:

“While there is currently no cure for dementia, no cure does not mean no hope. There is so much we can do to support the person to live well with dementia, and these dementia care guidelines provide the road map, practical advice and useful tips on not only what high-quality dementia care should look like, but the critically important detail around how to do it.”

Highlighting Prof McCarron’s dedication to including the patient voice throughout the project, Dr Avril Kennan, CEO of Health Research Charities Ireland noted:

“Health charities fund research with the potential to meaningfully impact the lives of the communities they support. The involvement of the people living with intellectual disability in the research design was a foundational element of this project. From the outset, Mary and her team worked collaboratively with these co-researchers, ensuring their voices shaped every stage of the research.”

The HRCI Research Impact Award seeks to highlight research funded by health research charities through the HRCI/Health Research Board (HRB) Joint Funding Scheme which has had a particularly positive impact on peoples’ lives.

Prof. McCarron’s work received funding of €180,000 under the HRCI/HRB Joint Funding Scheme in 2020 and was supported by The Alzheimer Society of Ireland. The award was presented by well-known advocate and The Alzheimer Society of Ireland Director, Ann Twomey, who has long been a vocal champion for carers of people living with dementia. Ann said:

“Receiving a dementia diagnosis is life-changing for every person and their family, and the support that comes after the diagnosis can truly determine a family’s experience. Until now, best-practice post-diagnostic dementia supports have not been properly understood, resourced, and made available with people with an intellectual disability. The Alzheimer Society of Ireland is passionate about supporting research that delivers real-world impact for people living with dementia and their families, and we are confident that this work will create meaningful change both in Ireland and internationally. We are thrilled to congratulate Professor McCarron on receiving this well-deserved award.”

The Mansion House event also recognised 12 new research projects funded through this scheme focused on areas such as rare diseases, cancer, vision loss, dementia, lung disease and new parents.

Coverage of Prof McCarrons win in The Irish Medical Times

Researcher honoured for transforming dementia care for people with intellectual disabilities

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HRCI – Joining the dots for research in health and social care

We were delighted to be asked to feature in the HRB blog in November 2024.

Dr Avril Kennan, HRCI CEO, spoke with Dr Claire O’Connell about building a connected community in health research, and how co-funding projects with the HRB delivers impact for patients and the public.

Find the full article here

Press release: Building Trust in Health Research in the Face of Misinformation

Dublin Event Highlights the Need for Proactive Trust-Building in Health Research as the World Faces a New Trump Presidency

Leaders in health research will discuss the importance of public trust in health research and science at an Irish Health Research Forum event in Dublin on 14 November.

The conference entitled ‘Public trust in health research: are we doing enough?’ will explore the roles that diverse stakeholders – including the media, researchers, Government, civil society organisations, research funders, and the pharmaceutical industry – play in reinforcing trust and combating misinformation.

Speaking ahead of the forum, one of the keynote speakers, Dr Fiona Lethbridge of the Science Media Centre UK, shared her excitement about the launch of a Science Media Centre pilot project in Ireland, inspired by the UK’s successful model: “It’s essential to empower the public and policymakers with trusted, evidence-based information. The pilot Science Media Centre aims to be a central resource in Ireland, connecting top experts with the media to raise reporting standards, enhance science literacy, and provide reliable information on key health research issues.”

Press release: Coalition of health charities releases new guide to fairer payment for partnership work

A new guide promoting fair payment for partnership work has been launched by a coalition of health charities, including Health Research Charities Ireland and UK-based organisations Cancer 52, the Patient Information Forum (PIF), the Charities Research Involvement Group, and the National Rheumatoid Arthritis Society. The guidance, titled Fair Market Value for Charities in Partnership Work, makes five key recommendations to support fair and sustainable partnerships between health charities and other sectors.

The guidance is designed to help charities articulate their value in collaborative efforts and increase recognition of their unique expertise – whether in representing the needs of their communities, contributing insights on specific disease areas, or offering specialised skills in communications, advocacy, and policy. It provides a framework for calculating fair market value for their contributions, ensuring that partnerships are not only effective but also equitable.

Dr Avril Kennan, CEO of Health Research Charities Ireland, emphasised the significance of this guidance: “This is a crucial step toward ensuring that the essential contributions of patient organisations and other health charities to research and medicines development are properly recognised and valued. Our member charities have been seeking this guidance to help ensure the sustainability of their partnerships.”

Sasha Daly, Interim CEO of Cancer 52 said: “Charities face increasing demands from all sectors to support patient and public involvement (PPI) and to work in partnerships. Partnership work uses funds and resources. Charities must manage these costs to ensure financial sustainability. We have huge value as partners. It is critical that this value is understood and recognised in the process of setting fair market value.”

The guide is based on extensive consultations with charities, funders and other important stakeholders, driven by a shared recognition among the coalition members that inconsistent and opaque payment practices are detrimental to partnerships. To address this, the guidance has outlined five core recommendations:

Full cost-recovery to support charity sustainability
Charities need to recover the full cost of their activity including staff costs and central overheads to ensure the sustainability of organisations.
Minimum entry point of £100/€120 per hour for the work of charities
Patient Focused Medicines Development (PFMD) has developed an FMV calculator for people with lived experience. This rate is a minimum entry fee to be paid to a charity working in partnership.
Equity of payment with healthcare professionals where this is higher than the PFMD rate
The staff of health charities sit alongside healthcare professionals on steering groups and conference platforms. Recognition of this expertise should mean there is equitable payment.
Market value add-on costs
When setting FMV the intangible ‘brand’ benefits of partnering with charities should be taken into account.
Fair contracting
FMV rates should be agreed at the outset. Contracts should be transparent and simplified. Payment terms should be 30 days.

Among those to formally endorse the guidance are Irish organisations, DEBRA Ireland, the Irish Heart Foundation, the Irish Lung Fibrosis Association and Maynooth University.

-ENDS-

Health Research Charities Ireland (HRCI)

HRCI is the national umbrella organisation in Ireland for over 45 charities engaged in health, medical and social care research, collectively representing over 2 million people.

Cancer 52

Cancer52 represents over 115 predominantly small patient support group cancer charities with the shared aim of promoting improved diagnosis, treatment and support for those affected by rare and less common cancers.

Patient Information Forum (PIF)

The Patient Information Forum (PIF) is the independent membership body for people working in health information and support. We are the independent voice of UK health information representing 300 cross-sector organisations.

Charities Research Involvement Group

CRIG is a grouping of charities, our aim is to enable shared learning about the involvement of people with lived experience in health and related research.

National Rheumatoid Arthritis Society

The National Rheumatoid Arthritis Society (NRAS), is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) as well as juvenile idiopathic arthritis (JIA).

Blog Post - Equality, diversity and inclusion in PPI: cultivating an EDI attitude of mind

During my time with HRCI, I’ve been privileged to learn about the opportunities offered by patient and public involvement in research (PPI). It’s transforming how health research is conceived, designed, implemented, and disseminated. However, there is a growing concern among those of us in this field about the lack of diversity in PPI. Including people often overlooked or ignored by mainstream society is crucial to ensuring health research that is rich, relevant, and effective for all, despite our genuine attempts to make PPI accessible, inclusive, safe, and equitable.

Our efforts to enhance equality, diversity, and inclusion (EDI) in PPI are hampered by assumptions, prejudices, and power dynamics. Assumptions are unconscious beliefs about the world and our place in it, informed by the established attitudes and opinions of our social and cultural environment. They trigger strong emotional responses to situations we face as we journey through life. Prejudices are often negative preconceptions or attitudes towards members of a group[1]. They arise out of our unconscious assumptions, significantly influencing our behaviours and interactions, and resulting in overt and covert judgements of others.

To understand the difficulty of involving silenced voices in PPI, we must uncover the hidden power dynamics that underpin assumptions and prejudices. Power dictates which forms of knowledge are accepted as somehow more ‘true’ than others. Often, the knowledge of certain groups (such as healthcare professionals and researchers) is valued more, while experiential, community-based knowledge is undervalued and marginalised even though it’s this very type of knowledge that we’re seeking in PPI. This issue is especially relevant for people who have been ignored by mainstream society, and who have bitter experience of being invalidated. This is fundamentally a question of justice.

None of us are free from assumptions, prejudices and power, but it’s what we do about it that counts. One way forward is to cultivate an EDI attitude of mind, interwoven with everyday PPI practice. This requires leadership, commitment and action, translated into clear outcomes. It’s about cultural transformation and change. We need to examine the unequal treatment of certain groups, and the power structures determining which groups are excluded. This can be a very personal process, critically reflecting on yourself in relation to those perceived as different or ‘other’ and how you may be viewed as ‘other’ yourself. And this cuts to the heart of the challenge of EDI in PPI: different people bring knowledge that challenges or opposes the dominant orthodoxy[2]. Therefore, we must be prepared for different ways of working and, as Involve and the NIHR stated in 2012, be prepared for “alternative ways of thinking about the world.”[3]

Flexibility, creativity and innovation are central to this work. This involves demonstrating commitment to EDI in organisational policies and procedures. Excellent examples include the PPI Ignite Network’s EDI strategy[4] and the UK-based NIHR’s Race Equality Framework[5]. This commitment must then translate into innovative and flexible ways of working that accommodate differences in PPI contributors’ knowledge, ways of working, and needs. It involves identifying the full diversity of PPI contributors relevant to a particular activity or piece of research, getting out there and meeting people in their communities, developing long-term relationships built on mutual trust and respect, and actively working to equalise relations of power by using participatory methods to learn from these groups what good PPI looks like. Valuing the experiential knowledge of PPI contributors and placing it on an equal footing with formal scientific and biomedical knowledge should be at the heart of ensuring EDI in PPI.

Adopting an EDI attitude of mind allows us to remain open, flexible, and responsive to the needs of marginalised and silenced people, whose unique, experiential knowledge has been overlooked. We need to embrace the messiness of EDI in PPI, because in doing so we embrace the full diversity of human experience. We will make mistakes and get it wrong sometimes, but by developing strong, mutually respectful relationships, we can co-create safe spaces to learn from the diverse knowledge of all PPI contributors and move towards truly inclusive PPI.

Dr Sarah Delaney (she/her)

HRCI Research Support Manager

[1] How people’s prejudices develop, 2023, Cherry K, Verywell Mind, https://www.verywellmind.com/what-is-prejudice-2795476

[2] Diversity and inclusion: What’s it about and why is it important for public involvement in research? 2012, Involve/NIHR, https://www.invo.org.uk/wp-content/uploads/2012/10/INVOLVEDiversityandInclusionOct2012.pdf

[3] Diversity and Inclusion: What’s it about and why is it important for public involvement in research? 2012, Involve/NIHR, https://www.invo.org.uk/wp-content/uploads/2012/10/INVOLVEDiversityandInclusionOct2012.pdf

[4] Embedding Equality, Diversity and Inclusion (EDI) across the PPI Ignite Network: Our Strategy, 2021, PPI Ignite Network, https://ppinetwork.ie/wp-content/uploads/2022/01/PPI-Ignite-Network-EDI-Strategy-Dec2021.pdf

[5] NIHR Race Equality Framework, 2022, NIHR, https://www.nihr.ac.uk/documents/nihr-race-equality-framework/30388, [accessed 29/04/2024]

HRCI HRB Joint Funding Scheme update

It’s been a very busy period for the Joint Funding Scheme as the charities entered the final stages of the application process. Supported by monthly Q&A sessions and one-to-one assistance where needed, the charities completed the peer review and applicant response phases in February and submitted their chosen applications to the HRB from the end of February to the end of March (a total of 21 eligible applications were ultimately received by the HRB). Meanwhile, eight PPI reviewers were recruited to the JFS Joint Selection Panel: four via HRCI and four via the HRB.

Press Release: Patients and society losing out through lack of investment in health research

Patients and society losing out through lack of investment in health research

Irish Health Research Forum 10^th anniversary event highlights the need for investment in research in the health system

The health system is failing the Irish public by not enabling research as part of healthcare, according to leaders in health research gathered in Dublin today (16^th May) to mark the tenth anniversary of the Irish Health Research Forum. Embedding research in health services ensures patients receive the latest evidence-based care, attracts investment in clinical trials, results in more fulfilled healthcare staff, and delivers societal and economic benefits, attendees were told.

Under the stewardship of Health Research Charities Ireland, the Irish Health Research Forum regularly convenes all stakeholders to tackle pressing issues for health research. A consistent and resounding plea from attendees over many years has been for increased capital expenditure in research infrastructure. Despite this repeated call for action, Government investment in R&D at just 0.29% of GDP, is hugely below the EU average of 0.71%, impeding Ireland’s ability to conduct world-class health research.

Dr Avril Kennan, CEO of HRCI, emphasised the importance of viewing research funding not as a cost, but as an investment with far-reaching benefits for the health and well-being of the Irish public and for the economy. “While Ireland boasts exceptional talent in the research community, the lack of adequate support from the state hampers our ability to drive quality research initiatives and prevents many healthcare staff from getting involved in research,” she remarked.

A fond farewell to outgoing HRCI Chair, Suzanne McCormack

Today, we want to take a moment to give thanks to Suzanne McCormack, who after almost 6 years, is stepping down as Chairperson of Health Research Charities Ireland (HRCI). Her experience and leadership have been invaluable to us, both in her role as Board Chair and prior to that, during her tenure as the Chair of the HRCI Advocacy and Communications Committee.

We’re Hiring!

Patient and Public Involvement Liaison Officer with the Rare Disease Clinical Trial Network

The RDCTN is a patient-oriented research network based within the University College Dublin (UCD) Clinical Research Centre, which aims to increase the quantity and quality of rare disease clinical trials in Ireland. The PPI Liaison role is the first position of its kind here due to its collaboration between Health Research Charities Ireland (HRCI) and UCD.

Applications are invited for this temporary post within the UCD School of Medicine.
Click on Search jobs for external applicants and insert Ref no – 016568

Click here to apply or scroll down for further info

A rare disease is one which affects less than 1 in 2000 individuals; because there are many such diseases it is estimated that there are 300,000 people living with a rare disease in Ireland. The Rare Disease Clinical Trial Network is an Irish, patient-oriented research network, based within the UCD Clinical Research Centre. This role is shared between the UCD Clinical Research centre and Health Research Charities Ireland (based off Camden Street) and will require attendance at both sites and remote working.

The specific aims of the Rare Disease Clinical Trial Network are
Aim 1) to facilitate and support academic investigators from within and outside Ireland in conducting clinical trials in rare diseases and to establish and augment partnerships with industry to increase rare disease trial conduct in Ireland;
Aim 2) to provide infrastructural support by provision of regulatory documents and establishment/management of a contact list of rare disease patients / stakeholders in Ireland;
Aim 3) to expand the involvement of patients, their families and members of the public in the design and conduct of trials in rare disease;
Aim 4) to educate and train researchers and investigators in rare disease trial conduct and explore/research methodological approaches to rare disease trials in order to optimise recruitment, retention and relevance of research outcomes to patient priorities.
These aims are aligned with those of the UCD Clinical Research Centre to ensure that patients’ voices are at the centre of how we design and carry out clinical trials.

Health Research Charities Ireland (HRCI) is the national umbrella organisation of charities active in health, medical and social care research, together representing over 1 million people in Ireland. Through support and advocacy, they represent their members’ joint interests, to achieve a vision of improved lives through a united community of health research charities. Their strong focus on patient and public involvement (PPI) and on rare diseases will ensure the successful candidate is supported and guided in their role.

The role holder will support PPI in the activities of the RDCTN. They will require excellent people skills, time management and organisational skills, tact and discretion in handling sensitive information and the ability to work in a collegial manner with investigators, staff, patients, their families and carers. They will get to work with enthusiastic teams, in an exciting area, and will be supported and mentored in their role

Fixed Salary: €51,000 per annum

Closing date: 17:00hrs (local Irish time) on 3rd of November 2023

Applications must be submitted by the closing date and time specified. Any applications which are still in progress at the closing time of 17:00hrs (Local Irish Time) on the specified closing date will be cancelled automatically by the system. UCD are unable to accept late applications.

Prior to application, further information (including application procedure) should be obtained from the Work at UCD website: https://www.ucd.ie/workatucd/jobs/

Click on Search jobs for external applicants and insert Ref no – 016568

It’s always a pleasure to see the recommendations contained in our Position Papers, highlighted in the media. Below is a snippet of a recent article in the Irish Medical Times.

Recent times have seen a growing shift in emphasis towards evidence-informed healthcare, driven primarily by the expectations of funders, policymakers, and the public. For example, in Ireland the Department of Further Education, Research, Innovation and Science have recently launched an open consultation with researchers to maximise the impact of research in policy development.

Establishing research support functions within the health service has also been identified as a key recommendation by Health Research Charities Ireland in their recent 2023 position paper to enable more effective and efficient healthcare for their members – approximately 40 charities active in health, medical and social care research, together representing over one million people in Ireland.

However, despite the apparent appetite, evidence-based healthcare is still not happening, with the ‘60-30-10’ challenge commonly cited. Specifically, international research suggests that approximately 60 per cent of healthcare is in line with evidence- or consensus-based guidelines, 30 per cent is wasteful or of low value, and 10 per cent is harmful.

Read the full article here

Dr Siobhán Hendrick (PhD), Patient and Public Involvement Liaison with the Rare Disease Clinical Trial Network, speaks to Niamh Cahill about patient engagement in research activities in the area of rare diseases.