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Facilitating a collaborative approach
to arthritis and rheumatic disease
UCD
George Moore Auditorium
02 November 2018
Together is Better
WELCOME FÁILTE
I am delighted to welcome you to Dublin, and to UCD for the
inaugural conference Facilitating a collaborative approach to
arthritis and rheumatic disease research.
The world of arthritis and rheumatic disease research is an ex-
citing area in which to work, and we’ll continue to meet and
bring inspired people (public, patients, advocates, policy mak-
ers, healthcare professionals and researchers) together in fo-
rums like this, to ensure Irish research remains at the cutting
edge.
Last December we launched our patient and public involvement
in research (PPI) initiative, which is called The Patient Voice in
Arthritis Research. We have developed The Patient Voice to-
gether: researchers and patients. It has been a phenomenal
success to date. This conference has arisen directly from feed-
back received from our Patient Voice strategy meeting last De-
cember. I hope it will inspire some truly interdisciplinary re-
search and act as a step towards better, more open dialogue
between everyone interested in improving the lives of those
living with arthritis and rheumatic disease.
I hope you enjoy the conference and find some sparks of inspi-
ration for new or improved research from the many speakers,
patient experience showcase and our hands-on interactive
workshops.
Throughout this conference, I ask you to stay engaged, keep us proactive and help us shape the future
of Irish arthritis and rheumatic disease research.
My personal thanks goes out to all of you.
Dr. Emma Dorris,
Conference Chair, Facilitating a collaborative approach to arthritis and rheumatic disease research.
Dr. Emma Dorris, conference chair,
also leads The Patient Voice in
Arthritis Research and leads an
international working group of
scientists to promote Public
Involvement in all areas of the life
science research.
DR. EMMA DORRIS
News Rheum is our patient-researcher co-
produced newsletter.
Features include:
Featured Researcher: each edition a
patient interviews a researcher and
asks the questions about research that
interests them.
Cellfies: Images of research
Your Questions: each edition focuses
on a different topic & we invite your
questions which are answered by
KEEP UP TO DATE
WITH NEWS RHEUM
We are finally recognizing and including the expertise and
insight a person has from living day-to-day with a disease or
condition, and asking you to share that expertise with us, to
help improve our research. Working together will greatly
increase the relevance and impact of research, and improve
the quality of life for those living with arthritis, faster.
Last year, UCD CAR went out into the community and asked
anyone living with arthritis to come and talk with us. We
had 16 patients or family members attend that first meeting
and were overwhelmed with the positivity and knowledge.
Our Patient Voice initiative has snowballed from there.
In less than a year, we have gone from no involvement to a
diverse range of ways patients have become involved. This
includes: patients being members of research advisory
groups, supervisors to students, being members of inter-
view panels for research staff, reviewing and critiquing our
research proposals, helping us design our research so that it
is more sensitive to the needs of patients, being full co-
applicants on funding proposals and acting as educators to
our early career researchers. We have become more open
as a research group. We have even started research to an
entirely new area directly due to feedback from The Patient
Voice in Arthritis Research.
Get Involved: patientvoicearthritis@ucd.ie
Conference Opening
Professor Orla Feely. Vice-President for Research, Innovation & Impact,
UCD
Grainne O’Leary. CEO Arthritis Ireland
9.30-10am
Session 1: Bench to Bedside
Chairs: Prof Gerry Wilson, UCD Centre for Arthritis Research & Wendy Costello,
iCAN Ireland
10-11am
Prof. Oliver Fitzgerald. Clinical Research 10-10.30
Prof. Denis Shields. Computational Biology in Health Research 10.30-11
Minister’s Address
Finian McGrath, TD. Minister of State for Disability Issues
11-11.15
Bench to Bedside Early Career Researcher Highlights 11.15-11.45
Dr. Daire O’Leary. Investigating rare rheumatic disease in children
Dr. Stephanie Merrigan. Rheumatoid arthritis susceptibility and severity
gene, C5orf30.
Hugh Giffney. Teaching an old dog new tricks: can nanodelivery of Metho-
trexate improve efficiency?
Coffee Break & Patient Experience Showcase 11.45-12.00
Conference Programme. George Moore Auditorium, UCD
O’Brien Centre for Science
Lunch, Networking & Patient Experience Showcase Viewing 1.40-2.30
Workshops
2.30-4.30
Coffee Break 4.30-4.45
Keynote Address
Chair: Emma Dorris
4.45-5.45
Dr. Stephen Simpson, Versus Arthritis
Closing Remarks
Prof. Gerry Wilson, Chair of Rheumatology UCD
5.45-6pm
Room H2.40
For Researchers
Room H1.49
For Public
Room E2.16
For All
Involving Patients in Research Demystifying the research cycle &
how you can get involved
Speaking the same language:
Improving communication
Session 2: Allied Health Research
Chairs: Deirdre Hurley, UCD Physiotherapy & John Sherwin, Patient Voice in Ar-
thritis Research Partner
12-1.40pm
Assoc Prof. Brona Fullen. Impact of rehabilitation on quality of life 12-12.30
Assoc Prof. Suzanne Guerin. How knowledge transfer and exchange activi-
ties can support the ability of research to have an impact in practice
12.30-1
Dr. Susie Donnelly. Participatory Action Research: Using Photovoice to ex-
plore solutions to self-managing rheumatoid arthritis
1-1.10
Denis O'Sullivan. My Involvement in GRAPPA: An Irish patient’s experience
of being involved in research at a European Level
1.10-1.20
Simon Stones. Patient and Public Involvement in Research 1.20-1.40
2.30-4.30pm
Workshops
Room H2.40
For Researchers
Involving Patients in Research
Room H1.49
For Public
Demystifying the research cycle
& how you can get involved
Room E2.16
For All
Speaking the same language: Im-
proving communication
Facilitators:
Charlotte Austin & Maureen Grossman
Versus Arthritis
Facilitator:
Emma Dorris
UCD Centre for Arthritis Research
Facilitators:
Rachel Lynch & Sarah McLoughlin
EUPATI Fellows & Patient Insight Part-
ners
About this workshop:
This interactive workshop is co-delivered
by members of the Versus Arthritis re-
search team and patient insight part-
ners. Developed with other medical
research charities within the Shared
Learning Group on Involvement in Re-
search (UK).
Goals:
An understanding of the value of
involving patients and the public in
research
Ability to differentiate between in-
volvement, engagement and partici-
pation
Key principles to consider before/
during/after involvement activities
Tips and considerations for com-
municating with a non-technical
audience.
About this workshop:
This workshop is aimed at introducing
academic research, the funding and
research cycle to patients and the pub-
lic. This workshop has been developed
directly in response to queries from
The Patient Voice in Arthritis Research.
Goals:
Introduce different types of re-
search
Explain how research is funded
Highlight how you can influence
and guide research
Demonstrate how first hand expe-
rience and lived expertise of a
disease can improve the relevance
of research
About this workshop:
This workshop is designed to improve
communication between patients and
researchers. It is custom designed and
delivered specifically for this confer-
ence by Patient Insight Partners from
the UCD patient involvement in re-
search initiatives
Goals:
Improve communication to en-
hance public perception and un-
derstanding of research.
Understand how to determine
pitching to the public
Improve communications to im-
prove public : researcher relation-
ships
Jargon busting in research commu-
nications
CHAIR BIOGRAPHIES
Workshop Descriptors Professor Gerry Wilson
Prof. Gerry Wilson is a consultant rheumatologist & Arthritis Ireland/UCD Chair of Rheumatology
where he leads the UCD Centre for Arthritis Research. His research goals include (1) to discover
how inflammation is linked to tissue damage in rheumatoid arthritis (RA) (2) to discover markers
of response to therapy & build prognostic biomarker score for RA (3) Determine genetic causes of
rare rheumatic conditions. Professor Wilson graduated in Medicine from Queen's University Bel-
fast in 1983. He was awarded an ARC Clinical Fellowship for a PhD thesis which he undertook at
the University of Sheffield and successfully completed in 1995. He was subsequently awarded an
ARC Copeman Fellowship for research at Stanford University. He was appointed Professor in
Rheumatology and Honorary Consultant Rheumatologist at the University of Sheffield Medical
School and Sheffield Teaching Hospitals NHS Foundation Trust where he was Head of the Shef-
field EULAR Centre of Excellence for Rheumatology prior to joining UCD in 2013.
Wendy Costello
Wendy is a founding member of the Irish Children's Arthritis Network and current Chairperson.
Wendy also sits on the PReS council where she represents views of ENCA associations, Wendy
is also a member of the Parents Forum of the British Society of Paediatric and Adolescent Rheu-
matology. Wendy is involved in research projects including Teens taking charge (NUIG) Patient
voice in arthritis (UCD) and CLUSTER a multi-centre UK project led by Professor Lucy Wedder-
burn. She has also completed the IPPOSI patient education programme. Areas of particular inter-
est are transition from paediatric to adult services and advocating for better services for JIA fami-
lies.
John Sherwin
John is a 65 year old father of three adult children. Shortly before the birth of the youngest he was
diagnosed with Spondylitis. Other than a warning to watch my back and some very ineffective
Physiotherapy he was told to take gentle exercise and difene daily for the rest of his life. Go for-
ward 20 years and his then gp seeing an unnatural bend my hands suggested arthritis, however
the blood test said no! Forward another 5 years and this with his knees in agony he was diag-
nosed with sero-negative osteo-arthritis. He has had one knee replaced and told he will need both
knees and hips. John is a member of Arthritis Ireland and has been involved with The Patient
Voice in Arthritis Research since our first meeting, and has reviewed and given input into a num-
ber of our research projects and applications.
Dr. Deirdre Hurley
Dr Deirdre Hurley-Osing is a Chartered Physiotherapist, Academic and Researcher. She is an
Associate Professor in the UCD School of Public Health, Physiotherapy and Sports Science. Her
current research focuses on the design, delivery and evaluation of self-management and physical
activity behaviour change interventions for people with chronic low back pain and osteoarthritis
receiving physiotherapy treatment in Ireland’s health service. Deirdre is also leading an interna-
tional, interdisciplinary research group that are developing and evaluating E-learning as a tool to
support the education of healthcare practitioners and students in behaviour change self-
management skills. She has published widely, disseminated her research extensively and re-
ceived several international research presentation awards.
Dr. Emma Dorris
Dr. Emma Dorris is a molecular biologist who investigates if differences in DNA of individuals with
& without disease can be used for diagnoses or can inform treatment. She joined the UCD Centre
for Arthritis Research in 2015 investigating the pathology of rheumatoid arthritis and rare rheu-
matic diseases. Dr. Dorris leads the Public and Patient Involvement initiative for the Centre, called
The Patient Voice in Arthritis Research, which aims to develop patient and researcher partner-
ships with the goal of reframing research to focus on the patient rather than the disease. Emma is
an eLife Ambassadors for good practice in science, the only Irish Ambassador, where she leads
their public involvement in research initiative; a global collaboration to help scientists involve the
public in research that is not naturally public-facing in the life and natural sciences.
Professor Orla Feely
Professor Feely is Vice President for Research, Innovation and Impact and a Professor of Elec-
tronic Engineering at University College Dublin. Her research is in the area of nonlinear circuits
and systems. Professor Feely is a Member of the Royal Irish Academy and a Fellow of the IEEE
(Institute of Electrical and Electronics Engineers), Engineers Ireland and the Irish Academy of
Engineering. She has served as Chair of the Irish Research Council, the EU Advisory Group on
Marie Sklodowska Curie Actions, and the IEEE Technical Committee on Nonlinear Circuits and
Systems, and as a member of a number of Editorial Boards. She is a director of the Young Scien-
tist and Technology Exhibition and a member of the Higher Education Authority.
Gráinne O’Leary
Gráinne O’Leary is Chief Executive of Arthritis Ireland where she is leading the strategy of the
charity to be one of the leading patient centric medical research charities in Ireland. Before be-
coming Chief Executive in January 2018, Ms. O’Leary developed and implemented Arthritis Ire-
land’s suite of patient support services, including the innovative Stanford University self-
management programme, a national helpline and a national physical activity programme in part-
nership with the Irish Society for Chartered Physiotherapists. She has developed key relation-
ships across the healthcare arena, including with corporate partners and funders, healthcare pro-
fessionals, the HSE and related agencies, professional bodies, academia, government officials
and other patient groups. She serves as a Board member of the Disability Federation of Ireland
and IPPOSI.
Professor Oliver Fitzgerald
Oliver FitzGerald is a consultant rheumatologist and Newman Clinical Research Professor at St
Vincent's University Hospital and the Conway Institute, University College Dublin (UCD). Profes-
sor FitzGerald has published over 250 peer-reviewed papers, many on the subject of spondyloar-
thropathy (SpA). His main research interests in SpA include clinical and therapeutic studies, both
investigator-led studies and pharmaceutical sponsored randomised controlled trials; the develop-
ment of novel imaging techniques; analysis of synovial and skin cellular and cytokine profiles;
and, more recently, studies of gene and protein expression in diseased tissue. He currently re-
ceives research funding support from the HRB and a number of pharmaceutical companies.
SPEAKER BIOGRAPHIES
Finian McGrath TD, Minister of State attending Government and Minister of State at the
Departments of Employment Affairs and Social Protection, Justice & Equality and Health
with special responsibility for Disabilities
The Minister is accountable for developing and articulating Government policy on improving the
lives of people with disabilities and their carers through three Government departments; Health,
Social Protection and Justice & Equality. The Minister will also be focusing on the rights of people
with disabilities as well as their equality of opportunity, access to early childhood care and educa-
tional needs. Finian has no political party affiliation. He was elected to Dublin City Council in
1999. First elected to Dáil Eireann as an Independent in 2002, he was subsequently re-elected in
2007, 2011 and again in 2016 representing Dublin Bay North. In May 2016, Finian as part of an
Independent Alliance, entered into a Partnership Government with an agreed programme of disa-
bility reforms. Married to the late Anne McGrath (nee Russell) and father to two daughters Caoim-
he and Cliodhna. Proud grandfather to Anna, daughter of Caoimhe and son-in-law Niall Relihan.
Dr. Stephanie Merrigan,
Stephanie Merrigan graduated from University College Dublin in 2013, with a BSc (Hons) in Phar-
macology. Enthused by the research environment and the development of therapeutic drugs,
Stephanie returned to UCD to undertake a PhD with the UCD Ocular Pharmacology & Genetics
Research Group. Having successfully completed here PhD in 2017, Stephanie now works as a
postdoctoral research scientist with the Centre for Arthritis Research, investigating the rheumatoid
arthritis susceptibility and severity gene, C5orf30.
Dr. Daire O’Leary
Dr Daire O’Leary graduated from the UCD School of Medicine in 2006. She was awarded a Mas-
ters in Clinical Education from NUI Galway in 2015. She recently completed her higher specialist
training in general paediatrics through the Royal College of Physicians in Ireland. She is currently
doing a PhD looking at a serious, rare childhood autoinflammatory disease called chronic recur-
rent multifocal osteomyelitis (CRMO).
Professor Denis Shields
Denis Shields is Professor of Clinical Bioinformatics in the UCD School of Medicine. He has pre-
viously worked in various universities in Ireland and the UK, and in Dublin companies involved in
clinical research. His research team's interests centre on computational biology, using computers
to help understand large and complex biological datasets. The applications include discovery of
genes associated with disease, understanding the organisation and function of genes in microor-
ganisms, and development of health-enhancing foods.
Hugh Giffney
My name is Hugh Giffney. I am a 3rd Year PhD student in the UCD School of Veterinary medi-
cine, under the supervision of Dr Crean & Prof. Brayden. My research project focuses on devel-
oping a new method to administer Methotrexate to patients with joint disease. I aim to combine
methotrexate with a nanoparticle delivery system to localise its therapeutic effects to the joint
while reducing the systemic side-effects traditionally associated with this treatment. It is my hope
that this new treatment strategy for methotrexate administration will allow patients to benefit from
this drugs efficient therapeutic properties while bypassing its negative side-effects.
Associate Professor Brona Fullen
Brona Fullen is an Associate Professor in the UCD School of Public Health, Physiotherapy and
Sports Science, Dublin, Ireland. She holds a BSc Physiotherapy (UUJ), MSc Healthcare
(Acupuncture, UCD), and PhD (UCD) degrees. Clinically Brona specialized in the topic of pain
working in Pain services at Massachusetts General Hospital, Boston, St Vincent’s University Hos-
pital and Tallaght Hospital Dublin. In UCD she teaches in the area of pain science to both under-
graduate and postgraduate students. She is also Co-Director of the UCD Centre for Translational
Pain Research with her physiotherapy colleagues Associate Professors Catherine Blake and
Catherine Doody. Her research areas of interest include the assessment and rehabilitation of
people with chronic pain in a range of conditions including musculoskeletal dysfunction, obesity,
and spinal cord injury. She has supervised MSc and PhD students to completion, and has been
invited to present her research at national and international meetings. Brona is a past President of
the Irish Pain Society (Chapter of the International Association for the Study of Pain), and is the
next President of the European Pain Federation EFIC® (2020-2023)- the first non-medical Doctor
and female elected to this position.
Associate Professor Suzanne Guerin
Suzanne is Associate Professor in Research Design and Analysis with the School of Psychology
at University College Dublin. Suzanne's research interests focus on the topic of health services
research and evaluation and she involved in projects in areas including intellectual disability and
palliative care, working directly with services such as St Michael's House and LauraLynn Chil-
dren's Hospice. Recently she has been working with colleagues in Ireland and Northern Ireland in
collaboration with the All Ireland Institute for Hospice and Palliative care on how best to promote
the transfer and exchange of information from research to practice and policy. They have devel-
oped a model to support this process called EMTReK (Evidence-based Model for the Transfer
and exchange of Research Knowledge). For more information visit www.knowledgetransfer.ie
Simon Stones, Patient Leader, Advocate and Consultant
Simon Stones is an award-winning patient leader, advocate and consultant from Manchester, who
was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in
2017. Simon was diagnosed with juvenile idiopathic arthritis, Crohn’s disease and fibromyalgia all
while under the age of 18. He also supports his parents who live with several health conditions.
Together, these experiences have stimulated Simon’s interest in healthcare, driving him to im-
prove the health and wellbeing of people with chronic conditions. He is currently a PhD Candidate
at the University of Leeds, where he is developing a framework to improve the supported self-
management of arthritis by children and their families. Simon is also an active patient research
partner on various national and international research projects and initiatives, and is a board
member of four associations: the European Network of Arthritis in Children (ENCA), the European
Network of Fibromyalgia Associations (ENFA), Fibromyalgia Action UK and RAiISE.
Denis O’Sullivan
In close collaboration with rheumatology health care professionals and other arthritis patients,
Denis O’Sullivan has worked on arthritis research projects since 2010. He has worked with EU-
LAR (European League Against Rheumatism), GRAPPA (Group for Research and Assessment
of Psoriasis and Psoriatic Arthritis) and OMERACT (Outcome Measures in Rheumatology). Denis
has twenty years first-hand experience of psoriatic arthritis.
Dr Susie Donnelly
Susie Donnelly is a sociologist with a background in communications and cultural analysis. She
holds a HDip, MSocSc and PhD in Sociology (University College Dublin) and a BA in Journalism
and Communications (Griffith College Dublin). In 2018, she was awarded funding under the Medi-
cal Humanities and Social Sciences Collaborative Scheme through the Wellcome Institutional
Strategic Support Fund (ISSF) to conduct the project, "Self-Managing Rheumatoid Arthritis: A
Photovoice Study". This is a collaborative study across the Centre for Arthritis Research and the
Health Systems group in University College Dublin. Prior to this role, Susie conducted research
as an ethnographer with the centre for Applied Research for Connected Health (ARCH), UCD
where she worked with companies to explore the user experience of medical technologies. Her
interests include cultural sociology, the sociology of chronic illness, participatory action research,
public and patient involvement in research (PPI), photovoice, Qualitative Methods, Co-design,
and the social dimensions of health and well-being.
Dr Stephen Simpson,
Dr Stephen Simpson is Versus Arthritis’s Director of Research, a post he took up in July 2012. In
this role he is responsible for leading the development and effective implementation of research
at the charity, including new areas of research translation and partnership funding. Prior to taking
up his current role, Stephen was the Director of Life Sciences, Science Foundation Ireland (SFI),
where he was responsible for leading the core objectives of the Foundation in delivering research
excellence in the life sciences, and sustaining economic relevance and growth of Irish research.
Through his experience in delivering research funding, as well as eight years as an editor at the
international journal, Science, Stephen has developed expertise in peer-review based evaluation
of high-impact internationally competitive research. He also has experience in performing and
publishing biomedical research, gained through ten years within, and in collaboration with, inter-
national research groups and institutions.
Contacts
www.arthritisireland.ie
Tel: 1890 252 846
Email: helpline@arthritisireland.ie
Twitter: @arthritisie
https://icanireland.ie
Tel: (+353) 086 828 9817
Email: icanireland@gmail.com
Twitter: @iCANIreland
www.versusarthritis.org
Tel: (+44) 0300 790 0400
Email: enquiries@versusarthritis.org
Twitter: @VersusArthritis
www.ucd.ie/car/about/patientvoice/
Tel: +353 (0)1 716 6809
Email: patientvoicearthritis@ucd.ie
www.ucd.ie/car/
Tel: +353 (0)1 716 6728
Email: rheumatology@ucd.ie
Twitter: @UCD_CAR
Some of our patients have shared their experience of living with arthritis or rheumatic disease.
Please visit the showcase during the break. We’d like to extend our thanks to those that
participated in this showcase.
PATIENT EXPERIENCE SHOWCASE
UCD Wireless Open (No Password Required)
Pro-Movement Conference. Please feel free to get up & move at any time
Early Career Researchers: visit our networking table to meet other ECRs
@UCD_CAR, #IrishArthritisResearchUCD, #TogtherIsBetter
Visit our Tweet Booth to show your support for open dialogue in research
Involvement Opportunities in Health Research
THE PATIENT VOICE
The Patient Voice in CANCER RESEARCH
Hosted by UCD Centre for Translational Oncology
Engaging cancer patients, cancer researchers and
other interested parties (families, carers, patient
advocates and healthcare professionals) in discus-
sions and decision making that positively impact on
cancer treatment and patient outcomes.
To learn more or get involved:
contact: patientvoicecancer@ucd.ie
Twitter: @PVCR_Ireland
The Patient Voice in DIABETES RESEARCH
Hosted by UCD Diabetes Complications Research
Centre
Engaging researchers and patient communities to
exchange knowledge and information to ensure
that our core objectives are guided by patient ex-
perience and expectations.
To learn more or get involved:
contact: dcrc@ucd.ie
www.ucd.ie/medicine/ourresearch/
researchcentres/diabetescomplicationsresearch
centre
The UCD Conway Institute
An interdisciplinary team of more than 400 re-
searchers who explore the mechanisms of health
and disease in an effort to develop preventative
strategies and novel diagnostic & therapeutic solu-
tions.
We believe that through PPI in health research, we
can better shape the research agenda, improve
the quality of our research, its relevance to society
and positively impact on patient outcomes.
Embracing Patient & Public Involvement through
The Patient Voice Initiatives: Arthritis Research;
Cancer Research; and Diabetes Research.
www.ucd.ie/conway/
Notes
Notes
U C D C e n t r e f o r A r t h r i t i s R e s e a r c h
UCD Conway Institute,
Belfield,
Dublin 4,
Ireland
E-mail: rheumatology@ucd.ie
patietvoicearthritis@ucd.ie
Web: www.ucd.ie/car/
Space to add your new contacts
MY CONTACTS
Notes & Contacts
This conference is supported by the Health Research
Board of Ireland under the HRB Conference and event
sponsorship scheme 2018
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