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