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HRB presents Impact Award to leading neurodegenerative disease researcher
The Health Research Board presents their Impact Award 2023 to Orla Hardiman, Professor of Neurology at Trinity College Dublin, Consultant Neurologist at Beaumont Hospital, and National Clinical Lead, Neurology, at the Health Services Executive.
The award* recognises how her exceptional contribution to research has informed policy and practice in a way that positively impacts both the care and the well-being of patients living with neurodegenerative conditions and their families.
Presenting the award, Dr Mairéad O’Driscoll, Chief Executive at the Health Research Board said.
“The HRB Impact Award celebrates people whose research improves health policy and practice and leads to meaningful change for people’s health and care. And I can’t think of a better example of that than Professor Hardiman.
“Throughout her career Prof Hardiman has put her patients and their families first. This has been the main driver for her research and her contribution to advancing professional practice. Her ability to deliver is not just down to her innovative ideas, clinical excellence, or her ability to advocate, but because she is guided always by the impact that her work has on patients. That is why Orla is so deserving of this award.”
From her early days and establishing the first specialist multidisciplinary clinics in Ireland for neurological conditions, to her current role as National Clinical Lead in Neurology for the Health Service Executive, Professor Hardiman has been an inspirational leader who has ensured that research delivers for health. Some key highlights are outlined below.
Key highlights – research with impact
- Professor Hardiman’s early scientific work provided new insights into the complex genetic components of neurogenerative disease.
- Her HRB-funded research has supported the longest running population-based Register for Amyotrophic Sclerosis / Motor Neuron Disease in the world. This has inspired similar registers in the US and Latin America to which she has also contributed her expertise.
- Orla created the first multidisciplinary clinics for patients with neurological conditions. In those she championed the inclusion of voluntary organisations as part of the team, leading to a true integrating between hospital and community-based care. That practice continues in her clinics to this day.
- Her early work led to the first Standard of Care for Neurological Conditions, and these were instrumental in the establishment of the 2003 Comhairle na nOispideal report on Neurological services in Ireland, which led to an increase in the number of Neurologists across Ireland from 11 in 1996, to over 40 currently in post.
- Her clinical management of ALS/MND also directly informed the 2016 HSE Model of Care for Neurology.
- She established a Motor Neuron Disease clinic at Beaumont Hospital which has gone on to become the national centre for MND and which provides direct care for over 80% of Irish patients with ALS. It is also recognised as a European and global centre of excellence.
- Orla has forged a career that has inspired and motivated a generation of health researchers. She has supervised 29 PhDs, four MDs, over ten post docs and ten Consultant Neurologists.
She has won numerous international awards and now the HRB is delighted to honour her with our own award in recognition of her outstanding achievements.
Accepting the HRB Impact Award, Professor Hardiman, said.
“Very early in my professional life, I made a conscious decision that all of my research endeavours would be guided by my experience as a working clinician, and by my desire to improve the lives of those whom I have the privilege of serving as a Consultant Neurologist.
“My guiding light throughout my research career has been to continuously ask myself whether the research work we do “matters” in a real-world sense to those we serve?
“In my clinical career I have tried to improve both the lot of people with chronic neurologic disease and to enhance clinical services for those with ALS/MND and related disorders.
“I am aware that professional success never occurs in isolation, and I am very fortunate to have been motivated by the many exceptionally bright students and trainees with whom I have worked throughout my professional life, all of whom have shaped my research career and outlook. It remains a great privilege to be able to support the wide range of cutting-edge scientific projects within our research group, of which I am very proud. And particularly as a mature woman, I appreciate the opportunity I have to continue to mentor younger female clinician scientists as they juggle career, family life and research.
“I am also truly fortunate to collaborate with many wonderful international colleagues, those like-minded clinician scientists across the world with whom I share a passion for high quality clinical research.
“And finally, it is very important to recognise that all of our clinical research work has been built around the personal tragedies of those who have been diagnosed with motor neuron disease and related conditions. We are very thankful to the thousands of individuals and their families who continue to allow us to study and learn from their journeys.
“I am grateful and humbled to be nominated for the HRB Impact Award by Professor Doherty at Trinity College Dublin and Ms Magdalen Rogers of the Neurological Alliance of Ireland. My genuine hope is that I, and our research group, have made an impact that will outlast our own professional careers and that we will in the future be able to say that ALS/MND a chronic, rather than a fatal, condition.”
Professor Hardiman will be presented with her award on 9 February 2023 at the HRB Grant Holders Conference which takes place at the Sheraton Hotel, Athlone, 9-10 February.
For more information or images from the Award ceremony contact
Brian Cummins
Health Research Board
m 0858764639 e bcummins@hrb.ie
*The HRB Impact Award aims to recognise and celebrate the wider benefits and achievements of HRB funded researchers beyond academic impact and it aims to showcase both the achievements and practices of individuals (and their teams) so they can serve as a role model for the wider HRB community to maximise the impact of their research. Nominations for the Award were assessed by an International Panel who selected the overall winner.
Ends.
Notes for editors
A selection of Professor Hardiman’s career highlights is presented below, organised into the following themes.
- Using research for positive impact
- Orla’s HRB story - in brief
- Capacity building and mentoring
- Recognised Leadership
Using research for positive impact
Orla founded the Neurological Alliance of Ireland in 1999. This is an umbrella organisation that encompasses 24 organisations catering to the needs of 800,000 people in Ireland with a neurological condition.
From her early days establishing the first specialist multidisciplinary clinics in Ireland for conditions like Multiple Sclerosis, Motor Neuron Disease, Muscular Dystrophy and others, to her current role as National Clinical Lead in Neurology for the Health Service Executive, Professor Hardiman has been at the forefront of enhanced care and innovation.
An innovative aspect of these clinics was the incorporation of representation of the voluntary organisation as a valued member of the team, actively participating in the clinic and providing expertise and concrete advice to both healthcare professionals and to patients and their families. This practice, which continues in Professor Hardiman’s clinics today, has significantly improved the patient experience, enabling true integration between the hospital and community-based care by harnessing the resources and networking capabilities of the voluntary sector, and in the case of the IMNDA, access to equipment and nursing services.
Prof Hardiman’s work on clinical management of ALS/MND directly informed the 2016 HSE Model of Care for Neurology and provided the high-quality evidence for a successful business plan she also generated to provide multi-annual funding from the HSE for the National ALS/MND Clinic.
The HSE has now formally recognised the National Centre for ALS/MND at Beaumont Hospital, where Prof Hardiman is a senior Consultant Neurologist.
Permanent sustainable funding enabled the appointment of an ANP and four clinical specialist nurses in ALS/MND, dedicated specialist physiotherapists, occupational therapists, speech and language therapists, social workers and psychologists and clerical support for the national ALS/MND Register, with a budget of €600k+ per annum.
This national service provides clinical and outreach care for all ALS/MND patients in Ireland and has enabled more than 20 Phase 1, 2 and 3 competitive industry sponsored and investigator led clinical trials in ALS/MND.
Professor Hardiman is an author of international guidelines for management of ALS and is a member of numerous international committees regarding clinical trial design.
Her HRB-funded efforts have led to the recognition of Beaumont Hospital as a European Reference Network Centre of Excellence for Motor Neuron Disease and other neuromuscular disorders.
She is now working with the HSE to develop and implement a parallel model for those with adult Spinal Muscular Atrophy, adult Neuromuscular Disease, Frontotemporal Dementia and Huntington’s Disease.
Orla’s HRB story - in brief
Professor Hardiman won her first HRB grant in 1998 “analysing access to health services for people with chronic neurological diseases (Multiple Sclerosis and Amyotrophic Lateral Sclerosis)”.
She won her second award, a HRB North/South Award 2002-2005 for “a population-based study of epidemiology, risk factors and genetics on the island of Ireland”.
Orla has an unbroken funding record stretching back to 2007 when she was one of four recipients of the HRB’s first Clinician Scientist Awards (CSA) for “A genomewide association study of neurodegeneration in a characterized and genetically defined population.”
Along with being continuously funded by the HRB since 2007 Orla has the distinction of being the only recipient of two consecutive HRB Clinician Scientist Awards. These awards were unique as they provided protected time to develop team-based research programmes and at the same time back filled the clinician’s patient-facing time so that day-to-day patient service levels remain unaffected.
Her second CSA followed in 2012 for “Deep Phenotyping and Complex Genetics of ALS: A multidisciplinary population-based approach.”
In 2013 she secured a HRB Interdisciplinary Capacity Enhancement Award (ICE) Award, “Training post-doctoral researchers by exploring and analysing the patient and caregiver journeys in ALS”.
Her HRB / EU Joint Programming in Neurodegenerative Disease award in 2015-2018 was on the subject of “Extending learnings from the Irish context to track the patient and caregiver journeys of those with ALS in five countries”.
Orla won two Knowledge Exchange and Disseminations awards. In 2015 “Behavioural Changes in ALS: What Families and Healthcare Professionals Need to Know” and in 2017, “Driving policy with data: A long-term sustainable specialist service for Amyotrophic Lateral Sclerosis”.
In 2020, Orla won a HRB COVID response award for “Telehealth to enhance management of vulnerable groups during the COVID-19 pandemic.”
Her most recent HRB award is as a co-lead on a Collaborative Doctoral Award (CDA) 2022 about “Training PhD students to undertake Multidisciplinary Innovation and Research Advancing Neurological care in a Digital Age”.
Capacity building and mentoring
Professor Hardiman is founder / Head of Trinity College Dublin’s Unit of Academic Neurology, hosting more than 50 researchers.
She has supervised 29 PhDs, 4 MDs, over 10 post docs and 10 Consultant Neurologists.
Notable individuals include:
- Dr Bryan J Traynor (MD 2001) Chief, Neuromuscular Diseases Research, NIH
- Dr Seán Pittock (MD 2000), Chief, Neuroimmunology, Mayo Clinic MN
- Prof Russell McLaughlin, (PhD 2012), Assistant Professor, Genomics TCD
- Dr Kevin Kenna (PhD 2013), Bioinformatician UMC Utrecht
- Prof Peter Bede (PhD 2014) HRB Emerging Clinician Scientist, TCD
- Prof Susan Byrne (PhD 2014) Associate Professor, CHI
- Prof Miriam Galvin (Post Doctoral 2014-17) Assoc Prof Research Methodology TCD
- Prof Katy Tobin (Post Doctoral 2014-17) Assistant Prof Epidemiology GBHI
- Dr Sheelah Connolly (Post Doctoral 2014-17) Senior Fellow, ESRI
Recognised Leadership
She has received a numerous national and international awards throughout her career including:
- Tom Connor Neuroscience Award (Ireland 2021)
- Healy Innovation Award (International 2020)
- Trinity Societal Impact Award (Ireland 2018)
- European Federation of Neurological societies Advocacy Award (Commendation) (International 2016)
- International ALS Alliance Forbes Norris Award (2011)
- American Academy of Neurology (AAN) Sheila Essey Award (International 2009)
- AAN Palatucci Advocacy Award (International 2003)
Orla is one of a handful of clinician scientists elected to the Science section of the Royal Irish Academy, of which she has served as a Council member.
About HRB
The Health Research Board (HRB) is Ireland’s lead funding agency supporting innovative health research and delivering data and evidence that improves people’s health and patient care. We are committed to putting people first, and ensuring data and evidence are used in policy and practice to overcome health challenges, advance health systems, and benefit society and economy.