Health_Research_Board_KEDS_2015_Awards_List

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Health Research Board - Knowledge

Exchange and Dissemination Awards 2015

Summary list of awards

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2

HRB – Knowledge Exchange and Dissemination Awards 2015 – Listed by Host Institution

Project Title Principal Investigator /

Lead applicant

Host Institution

What is Alpha-1?

A web-based resource and community of practice (CoP) to transform practices around ‘talking about epilepsy’

Ms Kitty O'Connor

Dr Veronica Lambert

Alpha One Foundation

Dublin City University

3

4

5

DEDIPAC Ireland: National one day

Symposium on determinants of Diet and

Physical Activity

Building a Self-Management Programme for

Living Well with and Beyond Head and Neck

Cancer

ICORG Communications Manager

Dr Donal O'Gorman

Professor Pamela

Gallagher

Dublin City University

Irish Cancer Society

6

Ms Eibhlin Mulroe Irish Clinical Oncology

Research Group Ltd

Professor Ella Arensman National Suicide

Research Foundation

7

8

9

10

Psychosocial, psychiatric and work-related risk factors associated with suicide in

Ireland: Enhancing dissemination and impact of research outcomes

An e-Platform for Multimorbidity Research and Clinical Practice

High quality pre-pregnancy care is essential for women with diabetes

Priority setting in uncertainties in trial methodology

Thinking outside the box: towards a novel approach to care delivery for young adults with type 1 diabetes

Dr Brian McGuire National University of

Ireland, Galway

Professor Fidelma Dunne National University of

Ireland, Galway

Professor Declan Devane National University of

Ireland, Galway

Dr Sean Dinneen National University of

Ireland, Galway

11

12

13

Understand My Pain: Educational Tools for

Chronic Pain

Synthesising and Disseminating Key Lessons from the AIIHPC Palliative Care Research

Network

Cracking Cancer with Science; an educational outreach campaign for primary

Dr Brian McGuire

Ms Paddie Blaney

Dr Ann Hopkins

National University of

Ireland, Galway

Our Lady's Hospice

Limited

Royal College of

Surgeons in Ireland

HRB – KEDS 2015 Page 1 of 33

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21

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23

24

25

15

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26

27

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29

30

31 schoolchildren

Creation of a young adult colouring book illustrating biological research on mental illness

Development and upgrading of the HMDB

Schizophrenia Metabocard

Development of a National Severe Asthma

Registry and comprehensive care program

Doctor Emigration Knowledge Exchange

Project (DEP-KEDS)

Healthy Pregnancy in Ireland

Professor David Cotter Royal College of

Surgeons in Ireland

Professor David Cotter

Professor Richard

Costello

Royal College of

Surgeons in Ireland

Royal College of

Surgeons in Ireland

Professor Ruairi Brugha Royal College of

Surgeons in Ireland

Professor Fergal Malone Royal College of

Dr Emer Begley

Dr Juliette Hussey

Surgeons in Ireland

The Alzheimer Society of

Ireland

Trinity College Dublin

Taking the Stress out of Dementia

Caregiving

APPlying Health: Using healthcare technology to enhance the delivery of rehabilitation programmes in cancer survivors

Behavioural Changes in ALS : What Families and Healthcare Professionals Need to Know

Brain Superheroes Return

Professor Orla Hardiman Trinity College Dublin

Cancer Immunology Research Saves Lives:

Find Out

CERVIVA: Making Connections and Creating

Impact

Development and launch of Irish Guidelines on the Management of Helicobacter pylori

Infection

Happy mothers...happy babies

Professor Kumlesh K.

Dev

Professor Cliona

O'Farrelly

Professor Deirdre

McNamara

Immunotherapy for the treatment of AMD: a preclinical evaluation

Innovative dissemination of IDS-TILDA

Wave 2 - Advancing years, different challenges

Progressing Universal Health Care:

Informing Citizens by pooling and disseminating research and generating debate

Promoting positive mental health messages for the older population: The Irish

Longitudinal Study on Ageing (TILDA) films

The Irish Longitudinal Study on Ageing

Professor Veronica

O'Keane

Dr Sarah Doyle

Professor Mary

McCarron

Dr Steve Thomas

Professor Rose Anne

Kenny

Professor Rose Anne

Trinity College Dublin

Trinity College Dublin

Professor John O'Leary Trinity College Dublin

Trinity College Dublin

Trinity College Dublin

Trinity College Dublin

Trinity College Dublin

Trinity College Dublin

Trinity College Dublin

Trinity College Dublin

HRB – KEDS 2015 Page 2 of 33

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45

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(TILDA) hypertension seminars for health professionals in primary and community care practice

Together against HIV: raising awareness and knowledge through documented reallife experiences and research discovery

Towards increased awareness and understanding of the risk of thrombosis in gynaecological cancers

Evidence Based Oral Healthcare for Older

Adults

Baby Steps Towards STRIDER: Support,

Website, Information, Dissemination,

Exchange

Capnography monitoring for conscious sedation in oral surgery

Creating awareness of research in caregiving (CARING)

Development of an online training and accreditation resource for a novel outcome assessment tool in high risk infants: the

Babyscreen app

Diet, health and sustainability - narrowing the gap between what we know and what we do

A user-friendly database of genetic dependencies in cancer

Development of The STOP-HF network for community based prevention of Heart

Failure

Enhancing Awareness of Blindness Resulting from Diabetes. Understanding Treatments

& Preventative Interventions

Enhancing Awareness of the Socio-

Economic Impact of Inherited Blindness

Irish Dystonia Research Group: Innovation through Collaboration

SOLAS.net: Development and Pilot

Implementation of an E-Learning

Physiotherapist Training Programme for

Self-Management of Chronic

Musculoskeletal Pain in Primary Care

Thrombosis risk in pregnancy: what you need to know

Kenny

Dr Nigel Stevenson

Dr Lucy Norris

Dr Martina Hayes

Professor Louise Kenny University College Cork

Dr Paul Brady

Dr Gerard Clarke

Dr Deirdre Murray

Professor Ivan Perry

Dr Colm Ryan

Professor Kenneth

McDonald

Dr Breandan Kennedy

Dr Breandan Kennedy

Professor Michael

Hutchinson

Dr Deirdre Hurley

Dr Fionnuala Ní Áinle

Trinity College Dublin

Trinity College Dublin

University College Cork

University College Cork

University College Cork

University College Cork

University College Cork

University College Dublin

University College Dublin

University College Dublin

University College Dublin

University College Dublin

University College Dublin

University College Dublin

HRB – KEDS 2015 Page 3 of 33

47 Translating Critical Care Research into

Clinical Practice

Professor Alistair Nichol University College Dublin

Individual award details

1.

What is Alpha-1?

Ms Kitty O'Connor

Alpha One Foundation

Lay summary

Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic disorder that affects the lungs. Typically people with

Alpha-1 present with chronic obstructive pulmonary disease (COPD) or severe asthma. Ireland has one of the highest rates of AATD in the world. 1 in 25 Irish people are carriers for the condition and are at risk of lung disease, particularly if they smoke.

AATD is under-diagnosed and delays in diagnosis are common. World Health Organisation guidelines for

Alpha-1 advocate screening of all COPD patients and poorly-controlled severe asthmatics. As COPD affects approximately 200,000 individuals in Ireland and 1 in 10 Irish adults are diagnosed with asthma, there is a clear need to increase awareness of AATD among these populations.

This application is for the production of a short animated film that clearly explains Alpha-1, why it happens, how to test for it, and how it is treated. This will be targeted specifically at those with COPD and severe asthma. The film has two aims, firstly to increase levels of awareness of this condition amongst people with

COPD and severe asthma and secondly to increase rates of diagnosis of AATD.

There are strong links between COPD Support Ireland, the Asthma Society of Ireland and the Alpha One

Foundation. We envisage this short animated film can be shared with these patient groups and shown at patient support group meetings and conferences. We aim to launch the animated film in collaboration with

COPD Support Ireland and Asthma Society of Ireland on World COPD Day in November 2016.

Ends.

2.

A web-based resource and community of practice (CoP) to transform practices around ‘talking about epilepsy’

Dr Veronica Lambert

Dublin City University

Lay summary

This knowledge exchange and dissemination (KED) initiative proposes to develop a variety of educational and informative resources using different technological media (audio, video and e-authoring tools) which will be delivered online in a designated website to support the translation of research evidence on childhood epilepsy disclosure into practice. This is important because diagnosis disclosure is a source of family concern

HRB – KEDS 2015 Page 4 of 33

and this research will provide novel insights for health professionals to enable them to help families navigate the disclosure decision-making process.

The resources will be tailored and accessible to different target audiences including children with epilepsy and their parents, clinicians who provide paediatric epilepsy services, public advocates for epilepsy and members of the general public. This is important for fashioning key research messages into appropriate languages and knowledge translation products that can be easily understood and assimilated by the different target audiences.

To develop the resources we will work collaboratively with an educational technologist and a small group of stakeholders with a specific interest in childhood epilepsy disclosure. Our vision is that this group would naturally evolve into a sustainable Community of Practice (CoP) (i.e. group of people with a common interest who interact, learn about and shape best practice); the focus of which will be to improve/evaluate the care and support offered to children with epilepsy and their parents as they navigate the disclosure decisionmaking process. To commence the growth of this CoP, this KED activity will implement five community building lifecycle stages; inquire, design, prototype, development and launch.

Ends.

3.

DEDIPAC Ireland: National one day Symposium on determinants of Diet and Physical Activity

Dr Donal O'Gorman

Dublin City University

Lay summary

DEDIPAC (Determinants of Diet and Physical Activity; Knowledge Hub to integrate and develop infrastructure for research across Europe) is a collaborative European project, where Irish researchers play a major role in defining and understanding dietary and activity factors that influence health. The aim of this application is to bring together, for the first time, the two largest consortia representing diet and physical activity in Ireland to exchange knowledge and disseminate findings from this HRB funded Joint Programming Initiative and provide an integrated approach to lifestyle recommendations for public health policy. The two consortia have representation from five Irish institutions (DCU, UL, UCC, UCD, TCD) and will collaborate to plan, develop and deliver a national symposium titled ‘DEDIPAC Ireland; determinants of Diet and Physical

Activity’. The key stakeholders in Ireland including academics, researchers, public health clinicians and policy makers will be invited to attend the symposium. It will also be advertised on-line and on the official DEDIPAC website for other interested parties to register. The symposium will be held in Dublin in late Summer 2016 with an emphasis on (i) presenting the findings of the Irish contribution to DEDIPAC, (ii) discussion on how they relate to the Irish context, (iii) highlighting issues relating to translating these findings into practice, (iv) creating a collaborative platform for integrating dietary and physical activity public health recommendations and (v) identifying the important steps for future dietary and physical activity research in Ireland.

Ends.

HRB – KEDS 2015 Page 5 of 33

4.

Building a Self-Management Programme for Living Well with and Beyond Head and Neck Cancer

Professor Pamela Gallagher

Irish Cancer Society

Lay summary

We propose to develop a new programme that empowers survivors of head and neck cancer (HNC) to better manage problems associated with their illness and live well with and beyond HNC. This is important because

HNC survivors have many documented unmet care needs and can face significant challenges associated with their condition and its treatment in the longer term. Currently, there are no intervention programmes and related materials to specifically address the unique support needs of HNC survivors. To achieve this we will use knowledge gained from our active grant to develop a new intervention programme and materials to support and empower HNC survivors to manage the unique consequences of their condition, improve their quality of life and allow them to participate more fully in their lives both at home and in the community. This will have positive knock-on effects on their families, wider society and service planning. Through KEDS, and in collaboration with our survivor and health professional stakeholders, we will develop the intervention programme and intervention materials, and refine them to ensure they are relevant, acceptable and can be feasibly delivered. Our vision is that this new programme will be evaluated in a full randomised control trial

(for which separate funding will be sought) before it is rolled-out on a national basis. This KED activity is a crucial step in moving from knowledge generation to translating knowledge into practice.

Ends.

5.

ICORG Communications Manager

Ms Eibhlin Mulroe

Irish Clinical Oncology Research Group Ltd

Lay Summary

2016 will mark the 20th anniversary of ICORG's formation. There are a range of public engagement activities on the agenda but in order to co-ordinate them ICORG will need an in-house communications function.

Activities will include;

Short documentary-style videos on patient experience, innovative research activities and new studies for website, social media and presentations

Revamp of the ICORG website and incorporate a public-facing image with accessible information on current studies and peer to peer information on participating in clinical trials

Media interviews with key ICORG PI's and staff to a lay audience on current studies and outcomes of past studies.

Organisation of an international conference in Dublin on expert cancer patients' involvement in clinical research. Leading patient advocates in the field to be invited e.g. Jan Geissler, Director of

EUPATI and Eric Low, CEO of Myeloma UK.

Ends.

HRB – KEDS 2015 Page 6 of 33

6.

Psychosocial, psychiatric and work-related risk factors associated with suicide in Ireland: Enhancing dissemination and impact of research outcomes

Professor Ella Arensman

National Suicide Research Foundation

Lay Summary

The SSIS-ACE study examines how psychosocial, psychiatric and work-related factors relate to suicide. The study involves liaising with family members bereaved by suicide, family members of those who survived a high-risk self-harm act, general practitioners (GPs), emergency department staff, mental health staff and coroners. During the course of our data collection, it has become clear that these groups struggle in responding to suicide. They report that there is not enough information available and that they did not know where to go for support. The SSIS-ACE researchers support these professionals and family members, but the reach of our activities is currently limited to face-to-face or telephone contact in Cork city and county. The current application outlines a proposal to develop a website for professionals and family members who are responding to suicide risk or suicide in Ireland and further afield. The information tailored for family members will include plain language descriptions of the causes and features of suicidal behaviour, responding sensitively, managing the practical steps in the aftermath of a suicide (e.g. what the inquest will be like, managing finances, etc.), and the importance of seeking professional bereavement support. The professional sections would provide screening tools, and summaries of information around responding to suicide risk and suicide. While the majority of the information for professionals will be on responding to the patient/client and their family, the importance of self-care and peer support will also be emphasised.

Promotion of the website would be through leaflet mailings, a launch seminar, and online advertising.

Ends.

7.

An e-Platform for Multimorbidity Research and Clinical Practice

Dr Brian McGuire

National University of Ireland, Galway

Lay summary

Multimorbidity refers to the occurrence of two or more medical problems at the same time. Multimorbidity is highly prevalent and may have serious consequences for quality of life. However, there is a dearth of public resources on managing multimorbidity and there is no central, public multimorbidity research centre for stakeholders to engage with.

In this proposal, we set out three separate but related activities, all of which will promote knowledge exchange and dissemination of findings to a broad audience.

1.

Our main KEDS activity will be to develop a multimorbidity research platform that will engage all multimorbidity stakeholders. The platform will be developed by the KEDS-employed computer programmer and will be hosted online and made publicly available. It will contain general information and research findings on multimorbidity and free digitised interventions and materials

HRB – KEDS 2015 Page 7 of 33

developed from our multimorbidity research work. The platform will also contain digitised tools developed for health care professionals, such as our Multimorbidity Checklist.

2.

The platform will host a data repository for researchers in multimorbidity, so there will be a multimorbidity data bank for future use. The CLARITY database will be uploaded to the new repository.

3.

We will expand on our original plan of developing an e-Health training course to developing an online course so to reach as wide an audience as possible.

To facilitate the progression of these activities, we will hire a computer programmer and also create a collaboration with a dedicated computer science research group.

Ends.

8.

High quality pre-pregnancy care is essential for women with diabetes.

Professor Fidelma Dunne

National University of Ireland, Galway

Lay summary

Women with diabetes have an increased risk of pregnancy complications. Many of these complications are due to high glucose levels in the first ten weeks of pregnancy. This means that pregnancy planning and tight glucose control is essential. Prepregnancy care is additional clinical care offered to women planning pregnancy. As part of our active HRB grant, we identified that prepregnancy care may be successfully delivered on a regional basis and improves pregnancy outcomes for attendees. The cost of delivering the program is less than the cost of managing the complications experienced by those who do not attend.

Unfortunately, prepregnancy care is only available to a minority of women and when available, only 50% attend. We aim to ensure tight glucose control before pregnancy and have strict guidelines on weight gain during pregnancy but women struggle to achieve this even with our support. This is partly due to the limited dietician time available to women. As part of this application we aim to overcome these factors with the following activities:

1.

Arrange a national information seminar for women with diabetes to focus on the benefits of prepregnancy care and pregnancy planning.

2.

Create and distribute a diet booklet for women with diabetes who are pregnant or planning pregnancy.

3.

Develop an online website with user-friendly information for women with diabetes including the diet book described above.

4.

Arrange a meeting of healthcare professionals and women with diabetes to encourage the development and audit of high quality prepregnancy care programs nationally.

Ends.

HRB – KEDS 2015 Page 8 of 33

9.

Priority setting in uncertainties in trial methodology

Professor Declan Devane

National University of Ireland, Galway

Lay summary

Challenges in how clinical trials are designed and conducted are commonly experienced by researchers at different stages of the research process. For example, difficulty in recruiting people to a trial often results in a delay in completing the trial or difficulty in using the trial results to make informed decisions about clinical care. For this reason, it is important that research into how trials might be better done is considered so that the strength of trials' findings are increased. There remains uncertainties on many aspects of trial design and conduct; for example, how best to distribute information effectively so participants fully understand the purpose of the trial or how best to collect the information or outcome data from the trial. The proposed

KEDS activity will help identify, and prioritise, these methodological uncertainties by bringing together people, across the UK and Ireland who are involved directly in designing, conducting and taking part in clinical trials. This bringing together of people will engage researchers, clinicians and the public, in an exercise of discussion, knowledge exchange and consensus, in identifying, agreeing, prioritising and disseminating a list of the most important uncertainties surrounding trial methodology. The critical end point of the activity will be a top-ten list of these uncertainties, determined by those directly involved in trials, which will be used to inform future research. Further, ongoing partner engagement in designing future studies will be encouraged and supported so that trials might be better designed and implemented in the future.

Ends.

10.

Thinking outside the box: towards a novel approach to care delivery for young adults with type 1 diabetes

Dr Sean Dinneen

National University of Ireland, Galway

Many young people living with type 1 diabetes struggle with the burden of day-to-day self-management. As a result they often have poor outcomes including the development of life-changing complications. We have formed a partnership between existing diabetes service providers (in Galway University Hospitals), academics in NUI Galway (and elsewhere) and Jigsaw Galway, a youth mental health service in our city. We are attempting to come up with a better model of care for young adults living with type 1 diabetes. In the proposed KEDS we intend to expand our existing partnership to include other providers of diabetes care in

Ireland and internationally and other national and international researchers with expertise in this area and lay representatives. We intend to present the findings of our current research including the results of a systematic review, observations made through interviews with young adults and their carers and lessons learned through forming a Young Adult Panel. In this way we hope to widen the scope of our research and also to get other service providers to think about how they might improve services locally. A key output from our KEDS-funded international conference will be agreement on a new approach to care delivery that can be piloted in a future study.

HRB – KEDS 2015 Page 9 of 33

Ends.

11.

Understand My Pain: Educational Tools for Chronic Pain

Dr Brian McGuire

National University of Ireland, Galway

Lay summary

Based on the findings of the research during our HRB ICE award, we will develop two educational tools.

Activity A will involve the creation of a free video that explains how chronic pain impacts on children and their families. This activity is vital based on our new understanding of the numbers of primary school children who live with chronic pain (that is, pain that lasts for more than 3 months) and conversations we have had with children, parents, teachers and health professionals. We aim to raise awareness regarding effective ways to support children in participating fully in all aspects of their lives and enjoy a higher quality of life, despite their pain.

Activity B consists of the development of a free web-based app for health professionals calculating the risk of future pain-related disability. Research indicates that the presence of certain personal and social factors increase the risk of future disability in chronic pain. The app will allow physicians and their patients to work collaboratively in determining future risk of pain-related disability by rating the patients various problems with, for example, sleep, mobility, motivation, self-esteem, social activity, mood and close relationships. This is an important activity because it will provide physicians with: a way of making accurate judgments about patients future risk of disability; tailor treatment according to risk, opportunities to engage with practice cases that require such judgments without detriment to real patients; and will allow them to hone their skills through the provision of training in making such judgments.

Ends.

12.

Synthesising and Disseminating Key Lessons from the AIIHPC Palliative Care Research Network

Ms Paddie Blaney

Our Lady's Hospice Limited

Lay summary

This application for KEDS funding proposes to further enhance knowledge transfer and exchange activities across the SRN/PCRN by conducting a higher level analysis of the dissemination products arising from each individual work project during the final year of the active grant. It is expected that dissemination products will include published papers, conference presentations, interim/final reports to AIIHPC and HRB, and documents relating to archived datasets. A secondary analysis of these dissemination products will be undertaken by identifying cross-cutting or high level messages from across all dissemination outputs including the final research reports. This analysis represents significant added value to the SRN/PCRN as it will build on the learning from the individual work projects.

Following the identification of these high level messages, the focus of the KEDS project will be the dynamic dissemination of these messages through the implementation of specific KTE activities and products

HRB – KEDS 2015 Page 10 of 33

including accessible and engaging video shorts, podcasts, policy briefs and newsletters. These activities will be designed with specialist input from key stakeholders representing researchers, practitioners, policy makers and users and carers of palliative care services to maximise the access and impact of the key messages.

Ends.

13.

Cracking Cancer with Science; an educational outreach campaign for primary schoolchildren

Dr Ann Hopkins

Royal College of Surgeons in Ireland

Lay summary

Breast cancer remains a significant disease in Ireland. Our laboratory is investigating novel therapies to target a sub-group of aggressive breast tumours. This work feeds into two larger efforts. The first is to help personalize cancer therapies for patients. The second is to provide new insight into how specific tumours develop, in order to better understand how they could be prevented in future. Accordingly, we propose an educational outreach campaign aimed at primary school children to demonstrate the job of a cancer researcher and to increase awareness of cancer prevention methods through strategies adapted for classroom delivery. It will encompass two principal elements:

(1) Creation of a video (incorporating biological animations) illustrating a day in the life of a cancer biologist.

This will allow students a realistic peek into a working day in a laboratory, giving them the chance to learn some basic biology principles while highlighting health-promoting lifestyle habits.

(2) In classroom workshop visits, practical demonstrations utilising laboratory equipment and the design of age-appropriate experiments will give students hands-on experience of conducting scientific research. To complement learning and disseminate knowledge, students will receive a workbook highlighting key concepts and incorporating interactive scientific puzzles, crosswords and fun facts to take home. This programme will allow exchange of knowledge in a progressive learning environment which in turn will demystify cancer, increase awareness of scientific research, inspire future scientists and promote a healthy lifestyle.

Ends.

14.

Creation of a young adult colouring book illustrating biological research on mental illness

Professor David Cotter

Royal College of Surgeons in Ireland

Lay summary

We plan to create an innovative educational activity to promote our research on biological investigations in mental illness. Our idea is to publish a young adult colouring book that will introduce young people to the complex world of the human brain, how scientists perform neuroscience research and how the findings relate to understanding mental illness. Adult colouring books are enormously popular for creative recreational use and here we plan to tailor the book to 15 to 18 year old Irish secondary school students, in particular transition year students. The book will narrate illustrations across the spectrum of neurobiology

HRB – KEDS 2015 Page 11 of 33

research from the brain, how the brain is structured, how it is connected, down to the intricate details of its components and how researchers try to identify these minute components as biomarkers for mental illness.

It will also bring the world of mental health research alive to young adults by explaining how researchers use information contained in the brain to answer complex questions about mental health, in particular how our research group investigate these biological biomarkers for the early diagnosis and treatment of mental illness. Our aim is to create a beautiful book, of self-contained scientific integrity, that students will pick up, marvel at the intricacies of the brain, enjoy colouring in and open their minds to scientific research. Our book aims to encourage students to consider a career in science and promote the importance of scientific research in developing a world-class healthcare system.

Ends.

15.

Development and upgrading of the HMDB Schizophrenia Metabocard

Professor David Cotter

Royal College of Surgeons in Ireland

Lay summary

The Human Metabolome Database (HMDB) is a freely available database that contains detailed information about small molecules found in the human body. It is the first and foremost reference site for metabolite data worldwide. It provides scientists, clinicians, educators and the public with the most current and comprehensive coverage of the human metabolome. A key way to disseminate our schizophrenia biomarker not only to our academic field, but also to clinicians and educators would be to utilise this freely available resource.

We propose to disseminate our schizophrenia metabolomic biomarker findings via the HMDB. We will do this by employing a research assistant (RA) to work in conjunction with Prof David Wishart’s research group

(University of Alberta), who created and developed the database. It will involve updating the dedicated metabolomic database (HMDB) section on diseases, more specifically schizophrenia. At present there is a dedicated Metabocard for metabolites that have been reported to be dysregulated in the biofluids (blood, cerebrospinal fluid, urine) of schizophrenia patients, however this card needs to be updated (last reference

2003). Updating this resource will generate a repository for our data and allow us share it with a wider community, increasing the visibility and impact of our research. Data sharing has many other advantages for example it leads to increases in citations and accelerates scientific progress.

Our current HRB funded project aims to measure the plasma metabolome and to identify biomarkers of the at risk mental state; (ARMS;) and who have converted from ARMS to psychotic illness.

Ends.

HRB – KEDS 2015 Page 12 of 33

16.

Development of a National Severe Asthma Registry and comprehensive care program

Professor Richard Costello

Royal College of Surgeons in Ireland

Lay summary

There has been a drive to deliver new asthma treatments through new biological agents. However, age old issues including poor adherence and poor inhaler use still apply and mean that it is difficult to tell if a patient has difficult to manage asthma or therapy refractory asthma. The proposal is to build a registry for patients with severe asthma. The registry will be a live patient management tool that uses novel technologies developed by the applicant's team that optimises a patient’s inhaler adherence and inhaler technique and also aligns this information with their clinical outcomes so that patient care can be optimised.

As part of the HRB funded INCA SUN randomised control trial we have identified that adherence to therapy by patients with severe asthma is poor but it can be optimised using a novel technological and educational methods developed by the team. This technology can assist physicians and specialist nurses to identify whether a patient has been adherent in therapy and has used their therapy effectively before advancing to more expensive and invasive monoclonal antibody therapy. In this project we will develop a web portal for a patient registry for patients with severe asthma. Secondly, we will hold workshops that are designed to provide Clinicians with the expertise in addressing and quantifying adherence and intervening on poor inhaler technique. Thirdly, work with HSE to implement this approach to care in a Severe Asthma network.

Ends.

17.

Doctor Emigration Knowledge Exchange Project (DEP-KEDS)

Professor Ruairi Brugha

Royal College of Surgeons in Ireland

Lay summary

The Doctor Emigration Project (DEP) aims to analyse doctor emigration from Ireland and to inform national health workforce policy about the factors influencing their emigration. The ultimate aim of the project is to assist national workforce planners to develop evidence-informed policies to promote the retention of doctors in, and the return of doctors to, the Irish health system.

The project has involved close collaboration with national stakeholders from the outset. The KEDS award would enhance those collaborations in two ways:

KEDs would bring in experts from Australia and the UK to share their experiences of medical career tracking with national policy makers. Discussions between national and international stakeholders would consider the benefits of career tracking data to national health workforce planning and its

 role in assessing the success of policy interventions.

An evaluation of the knowledge exchange process on the Doctor Emigration Project will be undertaken using observation and in-depth interviews with all participants. The purpose of this evaluation will be to strengthen the ongoing health workforce researcher-policy maker collaborations in the Irish context, to explore the success of the process in influencing policy and to

HRB – KEDS 2015 Page 13 of 33

contribute to the international knowledge exchange literature by documenting a successful knowledge exchange process.

In seeking to improve knowledge exchange in relation to health workforce research in the Irish context, the

KEDS award ultimately seeks to inform the development of a stronger medical workforce; one in which retention and return are successfully promoted.

Ends.

18.

Healthy Pregnancy in Ireland

Professor Fergal Malone

Royal College of Surgeons in Ireland

Lay summary

The HRB Ireland Perinatal CTN is an all-island of Ireland clinical trial network for mothers and babies representing a new and exciting collaboration between two established research groups; the Irish centre for

Fetal and Neonatal Translational Research (INFANT) and Perinatal Ireland.

The 'Healthy Pregnancy in Ireland' initiative is a public outreach programme supported by CTN. The aim of this initiative is to provide clear, reliable information on a range of pregnancy conditions and new-born health issues in order to educate the wider public and contextualize Perinatal CTN research. As part of this initiative we aim to develop an outreach page on our main network website with a series of short animated videos discussing key pregnancy complications, new-born health issues and research activities addressing these complications, explained in a simple, effective and clear fashion.

We also plan to develop a focused social media campaign around this initiative, with the aim of raising public awareness of the CTN’s research activity while providing information to Irish women on keeping healthy in pregnancy to optimize birth outcomes. Webinars and live chat sessions will be featured on our outreach webpage to promote communication between perinatal experts and the public.

Advancing maternal age, obesity along with other genetic and environmental factors can cause complications in pregnancy such as gestational diabetes, pre-eclampsia etc. The Healthy Pregnancy Ireland outreach initiative aims to reduce adverse outcomes in this population through education and support while empowering parents through research involvement.

Ends.

19.

Taking the Stress out of Dementia Caregiving

Dr Emer Begley

The Alzheimer Society of Ireland

Lay summary

HRB – KEDS 2015 Page 14 of 33

The existing award examines how the caring experience can impact the health of dementia spouse carers.

Using this emerging research evidence we will develop two animated films and a dedicated online resource providing easy-to-understand practical advice to carers to improve their quality of life and reduce stress.

FreeDem Films are animations about memory loss, dementia and brain health (www.freedemliving.com).

FreeDem films have been viewed in 140+ countries by 240,000+ and are used globally for training by

Alzheimer’s organisations, hospitals and other stakeholders. The proposed 2.5-minute films will look similar to existing FreeDem films but will address issues specifically relevant to carers. Evidence gathered for this application found that 82% of dementia carers surveyed thought the FreeDem film format was very easy to understand. However, only 29% felt the content was very relevant to them, showing the need for targeted content for carers.

In addition, a designated carer section will be added to the brain health awareness website

(www.hellobrain.eu). This will contain easy-to-understand carer-specific information based on empirical evidence from the De-Stress project and through engagement with the Dementia Carers Campaign Network

(DCCN). The films and web content will be promoted via a social media campaign designed and driven by the

ASI.

The content of the films will be confirmed following consultation with carers. Preliminary research findings indicate this content could include information about the importance of social connection, preventing social isolation and managing the sometimes challenging psychiatric and behavioural symptoms of dementia. "

Ends.

20.

APPlying Health: Using healthcare technology to enhance the delivery of rehabilitation programmes in cancer survivors

Dr Juliette Hussey

Trinity College Dublin

Lay summary

Recovery following oesophageal cancer (cancer of the foodpipe) can be challenging. Cancer rehabilitation, which may involve exercise, advice from a dietitian, education or other therapeutic interventions, can help patients make an optimal recovery. The research team is currently investigating the effect of a 12 week rehabilitation programme (ReStOre programme), implemented at 1 year following surgery for oesophageal cancer. The programme has been well received to date, with patients reporting that the programme not only improved their fitness but also gave them confidence, psychological support and a focus for recovery. Key feedback received from patients recommended additional supports for tracking their progress with exercise and diet at home between sessions.

This project aims to develop a tailored web based and smart phone based application that will supplement the supervised intervention. It will include features such as instructional videos, links to resources of interest and progress tracking. Clinicians will be able to track patient adherence to the programme, send motivational messages and evaluate rehabilitation goals, therefore enhancing communication with the patient throughout the rehabilitation period. Developing smart phone applications enhances the accessibility of rehabilitation programmes to a wider audience.

Ends.

HRB – KEDS 2015 Page 15 of 33

21.

Behavioural Changes in ALS : What Families and Healthcare Professionals Need to Know

Professor Orla Hardiman

Trinity College Dublin

Lay summary

Amyotrophic Lateral Sclerosis (ALS) (or Motor Neuron Disease (MND)) is a rapidly progressive neurodegeneration associated with loss of muscle power. Until recently, thinking and behaviour were considered unaffected, but we have shown that up to50% of people with ALS/MND experience changes in their ability to plan complex tasks, and that family members also frequently notice changes in personality including increased apathy, rigidity, and reduced ability to recognise the needs of others. Although our research shows that changes in behaviour and personality significantly increase the burden of care for families, they are often not reported by families or recognised by health care professionals.

Our research also shows that in some families of people with ALS/MND, and especially those with personality changes, there are higher rates of other psychological and psychiatric conditions such as schizophrenia and bipolar disease, suggesting a genetic predisposition that links some psychiatric conditions with ALS/MND. Understanding this link in affected families is likely to help us to find new and more specific treatments for ALS.

The purpose of this proposal is

1.

Develop an educational programme for families of those with ALS/MND health care professionals, and inform the public at large about the cognitive, behavioural and personality changes that can occur in ALS/MND;

2.

to explain how the possible links between these changes and psychological /psychiatric traits in family members could help us to find new treatments, and

3.

to help health care professionals recognize the increased burden associated with thinking and personality changes.

Ends.

22.

Brain Superheroes Return

Professor Kumlesh K. Dev

Trinity College Dublin

Lay summary

Making new drugs is long, costly and complex, and is often a mystery to many people. Our laboratory is involved in the development of new drugs for brain related illnesses, including illnesses such as Alzheimer’s disease (AD) and Multiple Sclerosis. Alongside our research, we conduct a number of outreach projects in the hope of connecting with young scientists, healthcare professionals and the general public. In our previous Knowledge and Dissemination award from HRB, we ran three activities that included an ‘Animation

Competition’ asking for animation and science students to submit animations that described brain diseases; a ‘Brain Superhero Competition’ asking school pupils to design a brain superhero and; the Annual Meeting in

Frontiers in Neurology that brought together academics, clinicians and pharma researchers interested in neurological diseases. Please see: www.neurologyireland.com

HRB – KEDS 2015 Page 16 of 33

We believe it is important to teach as many people as possible the basics of drug development. We believe this will help students, healthcare professionals and the public to understand and become involved in these activities. Therefore, firstly, we plan to run a number of Training Workshops’ to train people from all backgrounds the processes of drug development, using examples of drugs for brain diseases. Secondly, given the previous success with our school competition, we would also run our ‘Brain Superhero’ competition hoping to capture the imagination of young scientists. Thirdly, we aim to include a session specifically focused on Alzheimer’s disease in our 6th Annual Meeting 2016 in Frontiers in Neurology.

Ends.

23.

Cancer Immunology Research Saves Lives: Find Out

Professor Cliona O'Farrelly

Trinity College Dublin

Lay summary

The treatment of cancer is being revolutionised by cancer immunology. However cancer immunology is poorly understood by healthcare workers, patients and the general public. Here, in collaboration with the

Irish Cancer Society (ICS), we aim to use the expertise and discoveries generated by HRB and ICS funded research projects to communicate basic cancer immunology concepts and their value to five target audiences: patients, healthcare workers, biotech companies, teenagers and the public. An underpinning objective is to increase awareness of how research contributes to better healthcare as well as new therapies.

Our proposed dissemination programmes will use several media, including old fashioned wall-posters and brochures as well as dynamic presentations for social media, utube and websites to communicate to each of our target audiences the molecular, clinical and translational breakthroughs in cancer immunology research in Ireland. In collaboration with the Irish Cancer Society and Science Gallery of Trinity College Dublin, we aim to harness the skills of cancer immunology researchers to work with groups of cancer patients, teenagers whose parents have cancer and members of the public in the development of materials to communicate key issues around cancer immunology. New discoveries in cancer immunology are only possible if patients and healthcare workers are prepared to actively partake in translational research. Their continued engagement is dependent on sustained enthusiasm, generosity and interest; it is essential therefore that the value and achievements of their engagement and contribution are acknowledged and celebrated in order to maximise sustained impact of the HRB research strategy.

Ends.

24.

CERVIVA: Making Connections and Creating Impact

Professor John O'Leary

Trinity College Dublin

Lay summary

The goal of CERVIVA’s education and outreach programme is to create awareness, inform and effectively engage the public, health care professionals and healthcare providers on public health issues related to HPV

HRB – KEDS 2015 Page 17 of 33

associated diseases and on the specific research programmes underway within CERVIVA, which are addressing some of these issues. Our goal is to motivate and engage the general public and health care providers to actively participate in the research, which will ultimately inform cancer prevention strategies in

Ireland. We will achieve this goal by engaging in a series of education and outreach activities with key stakeholders, including the general public, CervicalCheck and The National Cancer Control Programme, and health care providers. Our education and outreach programme will provide innovative solutions including; running a National HPV Awareness Day; production of a CERVIVA infomercial which can be shown in clinic waiting rooms and on our website; developing a mobile website; hosting a series of public talks at town hall events around the country; and producing an annual CERVIVA newsletter.

For more information on our research and education and outreach initiatives please see our website http://www.cerviva.ie.

Ends.

25.

Development and launch of Irish Guidelines on the Management of Helicobacter pylori Infection

Professor Deirdre McNamara

Trinity College Dublin

Lay summary

Helicobacter pylori infection is a public health issue. It remains one of the most common infections in adults in Ireland and is the primary cause of stomach ulcers and stomach cancers. Our recent findings have indicated that the eradication rate for standard first-line triple therapy for H. pylori has fallen to unacceptable levels. Antibiotic resistance and non-compliance represent the largest barriers to the successful management of H. pylori infection. Consensus European guidelines recommend that the choice of therapy for H. pylori eradication is guided by the local prevalence of H. pylori antibiotic resistance. Our ongoing research has indicated that local H. pylori antibiotic resistance is high and on the increase, indicating that the standard triple therapy should no longer be used. This proposal aims to

(i) establish an Irish H. pylori Working Group involving gastroenterologists, upper gastrointestinal

(GI) surgeons, primary care physicians, and pharmacists to develop updated Irish guidelines on

(ii) the treatment of H. pylori, and launch these updates to the wider medical community involved in H. pylori treatment through a workshop on H. pylori treatment and through publication, and

(iii) provide educational updates on H. pylori treatment using a mobile App and web-based tools.

The knowledge exchange and dissemination from this project will educate both community- and hospital-based physicians in current best practices for H. pylori eradication leading to enhanced disease prevention and control. Additionally, this proposal will establish a long-term knowledge exchange network for future research into the impact of the updated treatment guidelines on eradication rates.

Ends.

HRB – KEDS 2015 Page 18 of 33

26.

Happy mothers...happy babies

Professor Veronica O'Keane

Trinity College Dublin

Lay summary

Pregnancy is the highest risk period in a woman's life for developing clinical depression. Stress and anxiety during pregnancy are common experiences. Women are usually anxious about the pregnancy and the delivery, about how they will cope with motherhood and the impact of the changes that having a baby will make on their lives. We now know that 50% of what was thought to be postnatal depression commences during pregnancy.

The idea for this project arose from observations in the course of conducting our HRB-sponsored research into the depression during pregnancy. Our screening for depression, as part of our procedures for recruiting participants to our research programme, indicated levels of depression comparable with international norms, about 10%.

While depression during pregnancy is routinely screened for in most EU countries, it is largely an unacknowledged problem in Irish obstetric services. There are no published studies even on the rates of depression during pregnancy. In this project, we wish to highlight the key messages relating to screening and referral for care for depression during pregnancy. We will do this through compiling the simple statistical findings that we have incidentally collected through our research. A report based on these findings will be professionally launched, initiating an Awareness Campaign. This will involve educational seminars for health care workers, a poster-and-leaflet campaign, and websites for health care workers and for the public.

We predict that our key messages will disseminate from this local project to a national level through an effective media campaign.

Ends.

27.

Immunotherapy for the treatment of AMD: a preclinical evaluation

Dr Sarah Doyle

Trinity College Dublin

Lay summary

Age-related Macular Degeneration (AMD) is the leading cause of central retinal vision loss worldwide.

Estimated prevalence of AMD in Ireland is 7% with an annual cost euro 130 million. Wet AMD involves the unwanted growth of blood under the retina causing instant vision loss. We have shown that Interleukin-18

(IL-18) has useful effects that block blood vessel growth when administered by injection, with promising results in animal models of wet AMD. Administration of another interleukin, IL-4, has also demonstrated beneficial effects in preclinical models of AMD. Cytokines such as IL-18 and IL-4 appear to hold huge potential for improving the treatment of wet AMD, however their progression into clinical trial is being hampered due to the fact that they are pro-inflammatory molecules. Although the weight of evidence

HRB – KEDS 2015 Page 19 of 33

indicates that direct injection of these cytokines into the eye has no significant adverse effects, immunotherapy for retinal disease is a novel idea in ophthalmology and fears that introduction of these cytokines could induce inflammation-mediated cell death, causing further vision loss persist. We now wish to organise an intensive and specific two-day workshop focusing specifically on facilitating transitioning our basic research findings to clinical implementation of immunotherapy. This workshop will involve both clinicians and scientists from Ireland, Europe and the US to discuss 1) the potential benefits of immunotherapy for AMD and 2) inflammation-mediated cell death. The objective is to provide a space to encourage debate and to outline measures that will result in meaningful research into the use of immunotherapy for retinal disease.

Ends.

28.

Innovative dissemination of IDS-TILDA Wave 2 - Advancing years, different challenges

Professor Mary McCarron

Trinity College Dublin

Lay summary

The IDS-TILDA study is designed to better understand experiences and challenges for adults with an intellectual disability (ID) as they age. 753 persons aged 40+ started in the study. There have been two waves of data collection, with waves three years apart and 94% of people who answered at Wave one participated again at Wave two. We think this is because what we are doing is important to people with ID, their families and their key workers and it helped that we involved people with ID in every step of our study. After Wave one we developed an accessible report and a DVD which explained the findings in an accessible way.

Accessible because over 80% of people taking part in our study reported difficulty in reading, writing and managing numbers. Now that Wave two is over we want to do similar things.

What we will do: Recruit actors with ID to develop another DVD of scenes that illustrate key IDS-TILDA Wave two findings

Why it is important: We want to continue to demonstrate to participants why their participation is so important and to help participants to understand the findings from our/their study. We also think that offering information in this way will encourage participants to continue to participate in future waves of IDS-

TILDA.

How we will do it: We will develop and distribute a DVD to participants, families and key staff. We will use infographics on key findings as the basis for roadshow presentations at the services where participants attend.

Ends.

HRB – KEDS 2015 Page 20 of 33

29.

Progressing Universal Health Care: Informing Citizens by pooling and disseminating research and generating debate

Dr Steve Thomas

Trinity College Dublin

Lay summary

There is little informed public discussion and debate around Universal Healthcare (UHC) in Ireland. There is also much confusion in political discourse between UHC and universal health insurance notwithstanding a recent policy shift towards UHC.

This KEDS project aims to build on the Pathways to UHC research by educating the public and stimulating informed policy and public discussion on

 how is the health system currently performing as measured by key indicators?

 what are the cost and organisational implications of moving towards UHC?

 what will this mean for citizens in terms of access and cost?

The KEDS funding would allow this to be achieved through:

(i) The development of a collaboration between the project team and the Irish Times to share, expand and disseminate data on Irish health system performance.

(ii) The development of the Pathways website to make it more accessible and user friendly to the non-specialist so that citizens can have a good, clear understanding of the issues and facts around UHC. To do this the project team will liaise with and learn from similar health and policy institutions in the UK who have developed user friendly websites.

(iii) Finally the team will seek to develop a community of practice around UHC across researchers and decision-makers to coordinate the different strands of research around UHC to improve quality and impact.

Through disseminating findings via Irish Times platforms, the Pathways website and developing a community of practice among thought leaders, KEDS funding would facilitate progress towards UHC in Ireland. "

Ends.

30.

Promoting positive mental health messages for the older population: The Irish Longitudinal Study on

Ageing (TILDA) films

Professor Rose Anne Kenny

Trinity College Dublin

Lay summary

The Irish Longitudinal Study on Ageing (TILDA) offers unique data on the challenges associated with ageing and how these can affect mood as we age: grief, retirement, poorer physical health. We have demonstrated that mood may be affected by loss of support networks, such as adult children moving abroad. Over 10% of

HRB – KEDS 2015 Page 21 of 33

the older Irish population have significant levels of depression and anxiety which can, in turn, detrimentally affect memory, physical health and a person’s ability to remain independent.

Resources which specifically encourage older people to look after their mental health, however, are lacking.

Unfortunately, there remains a stigma associated with talking about our worries or sadness, or seeking help for these from a mental health professional. Such reluctance may be particularly high among older adults whose perceptions may be tainted by Ireland’s history of institutionalising those with severe mental health problems. It has been shown however, that accurate information from trustworthy sources can help break down some of these barriers. Additionally health professionals will benefit from an evidence-informed resource, specific to older adults that they can easily direct patients and carers to.

We propose to create two accessible, easy to understand, ‘bite-size’ films which will fill an important gap in resources for older adults worried about their mental health. Our approach will include a strong public involvement process to refine the messaging on two critical topics:

1) When should I be concerned about my mental health and

2) Why staying connected is crucial for staying well.

Ends.

31.

The Irish Longitudinal Study on Ageing (TILDA) hypertension seminars for health professionals in primary and community care practice

Professor Rose Anne Kenny

Trinity College Dublin

Lay summary

In April 2015 the Irish Longitudinal Study on Ageing (TILDA) published research, funded through the active award, which indicates that approximately two thirds of older Irish adults have high blood pressure and close to half of them are unaware of their condition. High blood pressure is an important risk factor for heart disease and stroke which can be prevented and managed.

Through this application, the TILDA team will ensure that general practitioners (GPs), nurses and future nurses working in primary care practice and in the community in Ireland will be informed of these findings through a series of countrywide seminars. GPs and nurses are in contact with the general public on a daily basis, many of whom are completely unaware that their blood pressure is high. These health professionals are in the best position to develop routines in clinical practice which will improve the prevention, early detection and management of patients with high blood pressure, therefore having a positive impact on the health of the population before complications of high blood pressure occur. The seminars will be delivered through professional associations and nurse education programmes in locations and educational facilities throughout the country. The unfunded pilot programme launched in the Dublin area identified the demand for this information through ongoing requests locally and nationally.

HRB – KEDS 2015 Page 22 of 33

Funding this research dissemination ensures knowledge translation activities will effect on the ground changes at the local level to improve population health around the country for one of Ireland’s most pressing health challenges: high blood pressure.

Ends.

32.

Together against HIV: raising awareness and knowledge through documented real-life experiences and research discovery

Dr Nigel Stevenson

Trinity College Dublin

Lay summary

There were ~2 million new HIV infections and ~1.5 million HIV-related deaths worldwide in 2013, demonstrating the need for educational campaigns that raise awareness and prevent its spread. Current treatments suppress HIV, but do not totally clear it; however, a significant proportion of society believe these drugs cure HIV, which has developed complacency to HIV infection, further highlighting the need for accessible information. Therefore, by using online films this project aims to raise awareness and educate both HIV-positive and -negative individuals about HIV and its continued effects upon society. We will produce six innovative, educational movies, interviewing real-life individuals:

1) a clinician - explaining how HIV spreads, methods of protection and treatment;

2) a HIV-infected individual - describing their diagnosis, treatment and coping mechanisms;

3) a HIV-negative person whose partner is HIV-positive - explaining their life-changing experiences, emotions and methods of protection;

4) a HIV-positive person who was infected since birth; describing their life-long experience with HIV;

5) an individual who has lost a loved one to AIDS - describing how they managed the disease and grief

6) and personal interviews with TCD researchers - describing our HRB-funded breakthrough discoveries.

These movies will be hosted on a stand-alone website, making them internationally accessible and will be promoted through TCD’s Science Gallery, HIV-Ireland and the HRB. These personal stories and descriptions will provide an up-to-date information bank on HIV, with the aim of reducing infection rates, highlighting our

Irish research and helping those affected by HIV to deal with challenges.

Ends.

HRB – KEDS 2015 Page 23 of 33

33.

Towards increased awareness and understanding of the risk of thrombosis in gynaecological cancers

Dr Lucy Norris

Trinity College Dublin

Lay summary

All cancers are associated with an increased risk of clots to the legs and lungs however gynaecological cancers have a particularly high risk. Clots can occur after surgery or during chemotherapy and can be life threatening if they are not treated in time.

A recent survey of patients who suffered a clot during their cancer journey showed that, generally, patients are not warned about the risk of clots during cancer and are not told what to look out for. This proposal will address this particularly for gynaecological cancer patients. A patient information leaflet will be developed and also a speaker who has an interest in this area will speak at a patient information day. The information will also be available on patient support websites and on the Irish Cancer Society website.

Guidelines for prevention of blood clots in gynaecological cancer patients were changed in 2012 however a recent survey has shown that only 45% of gynaecologists in Europe were using the new guidelines. To address this knowledge gap, the applicants will develop a workshop/seminar which will include speakers who are experts in this area providing information for gynaecologists on the most recent developments in the prevention of cancer associated thrombosis. The main grant to which this proposal is linked aims to develop a risk score model to identify high risk patients. The meeting will include an interactive session on the practicalities of using this kind of model in clinical practice and an update on the project to date.

Ends.

34.

Evidence Based Oral Healthcare for Older Adults

Dr Martina Hayes

University College Cork

Lay summary

The World Health Organisation has highlighted the paucity of research into the oral health needs of older adults. The Health Research Board has recognised this and has funded a number of studies in recent years addressing this topic. Unfortunately there is a delay between the completion of studies and the publication of results in scientific journals. There is a further delay between the publication of the article and access of this information by dentists. Even after dentists have heard the results of studies it can be challenging to convince them to change their routine clinical practice. This award will fund three open-access publications to speed up the publication process and to widen the availability of the findings of our research into the oral healthcare of older adults. It will also fund an information day for general dentists to attend. This will include lectures on the best evidence for treating older adults in dental practice and in nursing homes. There will be a hands-on course to show dentists how treatment can be delivered to older adults in the dental surgery, in nursing homes, or in their own homes. A plain language summary booklet entitled "Oral Health for Older

Adults" will also be provided to bodies such as Age Action Ireland and Nursing Homes Ireland and will be available in the waiting rooms of general dentists throughout Ireland.

HRB – KEDS 2015 Page 24 of 33

Ends.

35.

Baby Steps Towards STRIDER: Support, Website, Information, Dissemination, Exchange

Professor Louise Kenny

University College Cork

Lay summary

This outreach programme will provide dedicated public information and education resources on intrauterine growth restriction (IUGR) and the STRIDER clinical trial, which aims to improve outcomes of pregnancies affected by IUGR with sildenafil citrate (Viagra).

It will provide support to women and their partners experiencing IUGR by providing clear and understandable information, FAQs and testimonies coupled with in-person information and support evenings on IUGR hosted by STRIDER clinicians.

Education sessions and webinars on the STRIDER trial will be delivered in Cork and Dublin engaging midwives, clinicians, pharmacists and other hospital staff enhancing their understanding of STRIDER and the role they play in recruiting/supporting patients on clinical trials. An event will be hosted on International

Clinical Trials Day 2016 linking with other HRB funded programmes to promote trials in pregnancy.

A national CPD-accredited Perinatal Research Study Day aimed at healthcare professionals and students will feature talks and workshops by the international expert members of STRIDER Individual Participant Data

(IPD). It will update on trends in perinatal research, encourage increased collaboration and showcase clinical trials. The research module (PowerTrials) of the newly introduced National electronic maternity chart will be demonstrated highlighting its potential in aiding recruitment and data collection in clinical trials.

This programme will benefit patient families and healthcare professionals by addressing the lack of accessible, clear information about early-onset severe IUGR and perinatal clinical trials. It will provide accurate information for the media who have already engaged interest with headlines such as ‘Why are these pregnant women taking Viagra?’

Ends.

36.

Capnography monitoring for conscious sedation in oral surgery

Dr Paul Brady

University College Cork

Lay summary

Capnography has the potential to enhance patient’s safety in the dental setting. Procedural sedation techniques are specific to each area of medicine where sedation is practiced. Conscious sedation in an out of hospital setting by a non-anaesthetist requires robust monitoring. The most important negative side effect of sedation is respiratory compromise due to respiratory depression or obstruction. Capnography monitors the patient on a breath by breath basis in real time. Various medical bodies have recommended capnography monitoring for procedural sedation. However, capnography is not currently routinely utilised for dental sedation. There is a lack of evidence in this setting. There is therefore a need for research.

I have just completed data collection looking at capnography for monitoring in the dental setting. During the trial I collected a lot of data including some video footage of the actual monitor screens when patients were

HRB – KEDS 2015 Page 25 of 33

sedated. There is a need to educate dental sedationist's on capnography monitoring and I feel that I am well placed to share my knowledge.

I am keen to disseminate this new knowledge that I have gleaned to the community of sedationists. To achieve this goal I would like to produce a number of media productions to include edited versions of my video clips and also some animations.

I already have two publications accepted by peer reviewed journals related to this research. I have a number of other articles in the pipeline. Additional funding for two open access publications would assist with dissemination of my research findings.

Ends.

37.

Creating awareness of research in caregiving (CARING)

Dr Gerard Clarke

University College Cork

Lay summary

An increasing number of people in Ireland are providing care for a relative with dementia. This important unpaid work comes with an underappreciated cost to the health of the caregiver. Evidence suggests that dementia caregiving is associated with heightened psychological stress, as well as problems such as depression. Our research examines the impact of dementia caregiving on the stress levels of caregivers, and how this in turn affects their physiology. We are also interested in the potential of stress reduction classes to reverse such effects.

Our interactive outreach campaign, which will be heavily promoted via social media, will create greater awareness of our findings. In collaboration with the Glucksman gallery at University College Cork, we will host i) an arts workshop for dementia caregivers and the people they care for and ii) a larger public event, as a forum to showcase our results and to open up a discussion of the effects of dementia caregiving.

Key researchers in dementia caregiving research will be assembled for a research seminar series aimed at healthcare providers and policy makers and including dissemination of our own results, to help create a synthesis with the field’s state-of-the art. Educational material and an audio file of stress reduction classes will be produced and made freely accessible to caregivers through the APC website. Finally, we will exhibit at the Senior Times’ Active Over-50’s event at Cork, with associated articles in Senior Times’ magazine, to increase awareness of our HRB funded activities. "

Ends.

HRB – KEDS 2015 Page 26 of 33

38.

Development of an online training and accreditation resource for a novel outcome assessment tool in high risk infants: the Babyscreen app

Dr Deirdre Murray

University College Cork

Lay summary

The HRB funded BiHiVE2 study has focused on predicting long term learning disability in children following birth related brain injury. Unfortunately there are, currently, no reliable methods of assessing learning ability in children at a young age. Current developmental assessments focus on developmental milestones. They are not true tests of cognitive ability, are time consuming and observer dependant.

We have worked with computer scientists to develop a tablet based psychological assessment tool, which measures cognitive ability in an engaging and interactive way at 18-30 months. This assessment technique has the potential to produce a sea-change in how we assess young children. Our collaborators in Karolinska

Institute (KI), and the Institute of Child Health (ICH), London have requested the use of the application for their follow up assessments in children, both in the BiHiVE2 cohort, and additional high risk children in UK and Indian cohorts. These studies will allow us to disseminate our findings to influential researchers in the field of child neuropsychology.

Sharing the Babyscreen app would also allow us to test many more infants, and to develop a database of age and sex related normative reference ranges. This requires that the app is used in a standardised fashion by trained researchers. We request additional funding to develop an online training resource, to share with registered collaborators. Once training is successfully completed participants will be added to the

Babyscreen app as users and normative data collected will be uploaded to a central server for analysis by the programming team.

Ends.

39.

Diet, health and sustainability - narrowing the gap between what we know and what we do

Professor Ivan Perry

University College Cork

Lay summary

Knowledge translation in the area of diet and health is challenging due to the range of vested interests in the food sector and the contested discourse on food, diet and health among policy makers, practitioners, media and the general public. There is considerable agreement on key food policy measures open to government with potential for positive impacts on health outcomes. Unfortunately, scientific consensus does not ensure translation of evidence into practice or policy. The HRB Centre for Health and Diet Research (CHDR) proposes to extend and enhance its ongoing work on integrated knowledge translation (iKT). The focus of the proposed iKT activities will be on: i) iKT capacity building within the CHDR, through placement of two early career CHDR scientists to the Canadian Institute of Health Research (CIHR) and a relevant CIHR institute; ii) national iKT placements for PhD students to the Department of Health and other relevant agencies; iii) joint iKT strategy development with key partner organisations; iv) the development of an open online module in iKT concepts and methods, targeting health researchers and interested policy makers in Ireland; v) the

HRB – KEDS 2015 Page 27 of 33

development of an open online module on healthy eating, drawing on CHDR outputs and relevant international research evidence, targeting and accessible to the general public, media, practitioners and policy makers and vi) the appointment of an iKT Advisor/Blog Editor to promote the online learning resources, set up a CHDR Blog, promote key CHDR outputs and establish a regular series of policy briefs for government, other stakeholders and media.

Ends.

40.

A user-friendly database of genetic dependencies in cancer

Dr Colm Ryan

University College Dublin

Lay summary

A major challenge in cancer therapeutics is to kill tumour cells without harming other cells in the body. One means to achieve this is to exploit the genetic changes that distinguish cancer cells from normal cells and that may leave them vulnerable to targeted treatments. A promising approach to developing such targeted treatments is the identification of genetic dependencies - genes whose function is only essential in the presence of specific cancer-associated mutations. To this end a number of research groups have carried out loss-of-function experiments to identify genetic dependencies in cancer cell lines with a particular mutation.

These experiments are expensive to carry out and often produce large quantities of data. In effect the results of these experiments are hypothesis generating resources (e.g. in patients with mutation X gene Y will be a good drug target) that serve as a starting point for more targeted research (e.g. testing a drug in a mouse model). However, typically the resulting datasets are difficult to analyse for those without extensive bioinformatics skills, and consequently they are underutilised. There is currently no way for cancer researchers interested in a specific gene to identify the experimentally determined genetic dependencies

(candidate drug targets) associated with their gene of interest. Here we propose to build an easy to query online database that will permit those researchers without bioinformatics expertise to retrieve the dependencies identified for their gene of interest.

Ends.

41.

Development of The STOP-HF network for community based prevention of Heart Failure

Professor Kenneth McDonald

University College Dublin

Lay summary

STOPHFnet will create a virtual community of practice which will utilize the results of research from our HRB funded Natural History of Diabetic Cardiomyopathy grant to allow rapid dissemination to general practitioners in the community. This is particularly timely as diabetes will for the first time be nationally managed by GPs under the new contract. It will enable the standardisation and integration of the delivery of care to patients with diabetes and in particular heart failure prevention in diabetes, ensuring that it was evidence based. It also aimed to create the infrastructure for further clinical trials to obtain further evidence on best management. STOPHFNet will establish regional networks of selected and highly motivated health

HRB – KEDS 2015 Page 28 of 33

care professionals. It will involve the creation and dissemination of evidence based guidelines based on the results of this study, weekly webconferences to discuss recent research findings and individual patient management (virtual consults) as well as clinical trial results and further studies.

It will involve;

Informative website (www.stophfnet.org)

Education website highlighting results from latest research

Web based communities for patients and professionals

Telehealth solutions, including video consultations in a safe environment

And also involve a study day for the Midlands Diabetes Group GPs to introduce them to this network

STOP-HFnet will also provide online content to the public. We will also use the next work to involve the public and patients through information sessions -2xMidlands and 2xDublin to introduce STOP-

HF patients to the STOP-HF concept and to general measures necessary to prevent cardiovascular disease.

Ends.

42.

Enhancing Awareness of Blindness Resulting from Diabetes. Understanding Treatments &

Preventative Interventions

Dr Breandan Kennedy

University College Dublin

Lay summary

In Ireland, Diabetic Retinopathy is a leading cause of blindness. The number of people becoming blind due to diabetes is set to rapidly increase as the ‘diabetes epidemic’ unfolds. In general, there is a lack of awareness as to the social, economic and health impact of diabetic blindness.

Here, we generate short 3D-animations that can rapidly communicate, in visually engaging video, the significance of diabetic blindness, the mechanisms leading to blindness and preventative/therapeutic interventions. These animations can be rapidly disseminated to wide cohorts of patients, clinicians, scientists, policy makers and lay-persons using websites, social media and school visits.

At the start, during and after the end of this KEDS award, we will engage with the relevant patient, clinician and schoolteacher stakeholders to design the awareness media so it effectively enhance awareness of these conditions and current research initiatives to each target audience.

Quantitative and qualitative feedback will be sought from the end-users to evaluate how the media generated and our dissemination strategy has enhanced awareness and understanding of diabetic blindness.

Critical feedback will also be sought to identify areas which we can further improve. "

Ends.

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43.

Enhancing Awareness of the Socio-Economic Impact of Inherited Blindness

Dr Breandan Kennedy

University College Dublin

Lay summary

In Ireland, many devastating diseases have an inherited cause and are passed onto further generations.

Blindness due to inherited degeneration of the retina at the back of the eye is an excellent case-study with which to explain the basis of inherited disease, the socio-economic impact and the research required to generate new treatments that can prevent or delay inherited disease.

-Here, in partnership with clinical ophthalmologists, Fighting Blindness, schoolteachers and Firecrest/ICON, we develop novel 3D educational animations that increase awareness of these issues. These animations can be rapidly disseminated to the public using websites and social media.

-In addition, we will establish a hands-on Summer School in which secondary school students (20 per week X

5 weeks) will receive bespoke taught and practical instruction to enhance their awareness of inherited disease, and training in technologies that allow confirmation of genetic inheritance and testing of potential drug treatments (in research models). The students will be challenged to generate additional educational material that can be dispersed to schools/public.

-Throughout this KEDS award, we will engage with the relevant patient, clinician and schoolteacher stakeholders to design the awareness media so it effectively enhance awareness of these conditions and current research initiatives to the target audience. Quantitative and qualitative feedback will be sought from the end-users to evaluate how the media generated and our dissemination strategy has enhanced awareness and understanding of inherited blindness. Critical feedback will also be sought to identify areas for further future improvement.

Ends.

44.

Irish Dystonia Research Group: Innovation through Collaboration

Professor Michael Hutchinson

University College Dublin

Lay summary

Our research group of Irish consultant neurologists (with an interest in movement disorders) and laboratory based scientists (engineers in the Department of Neural Engineering in Trinity College Dublin) has been involved in finding the cause(s) of a movement disorder which affects about 600–800 individuals in

Ireland. This movement disorder is called adult-onset dystonia and is manifested as abnormal irregular spasmodic muscle activity affecting the neck (cervical dystonia), the eyes (blepharospasm), the hand and forearm (focal hand dystonia, writer's cramp, musician’s dystonia). The cause(s) of this disorder is/are unknown but considered to be due to a combination of inherited genetic factors and environmental exposures. We have published widely on this disorder and the alliance of clinical and engineering skills in hypothesis-driven research has been extremely productive. In order to increase awareness among the public and the scientific community, we wish to develop a website devoted to our research output and to explain the importance of the understanding the biological basis this disorder. To this end we have joined with

HRB – KEDS 2015 Page 30 of 33

Dystonia Ireland (the self-help group) to make available on this interactive website (with videos and animation) information about dystonia and the activities of both the research group and Dystonia Ireland.

We will hold an information meeting for patients and relatives in May 2016. By developing and launching this website (and updating the Dystonia Ireland website) we would expect to increase awareness of this disorder in both Ireland and Europe and to highlight this important Irish research work funded by the Health

Research Board.

Ends.

45.

SOLAS.net: Development and Pilot Implementation of an E-Learning Physiotherapist Training

Programme for Self-Management of Chronic Musculoskeletal Pain in Primary Care

Dr Deirdre Hurley

University College Dublin

Lay summary

As part of the original award, an evidence-supported group treatment approach for clients with persistent musculoskeletal pain termed SOLAS: Self-management of Osteoarthritis and Low back pain through Activity and Skills was developed. Also, a two day face-to-face physiotherapist training programme was developed and delivered to HSE primary care physiotherapists from Dublin/Kildare to support them to manage patients in the SOLAS trial [http://www.ucd.ie/solastrial/]

We propose to improve knowledge exchange and dissemination by increasing the competency and number of Physiotherapists working in primary care clinics in the HSE across Ireland to manage clients using the

SOLAS programme. This will reduce the time needed to move to a larger trial, and increase the accessibility of the SOLAS programme to HSE physiotherapists and clients across Ireland.

In order to do this, we aim to develop a sustainable and interactive e-learning training platform (SOLAS.net) that can be integrated and adopted into health service systems, particularly within the HSE.

The study objectives are two-fold:

1) to ensure the online method of training physiotherapists to deliver SOLAS is comparable to the current face-to-face method on relevant outcomes for effective training.

2) to assess the online training format as a tool to aid the implementation of the SOLAS programme in real world settings using WHO recommended outcomes (acceptability, appropriateness, feasibility, fidelity, sustainability and cost).

This will involve adapting the existing SOLAS training programme and website for a high quality E-learning experience with strong physiotherapist engagement and feedback to mirror the face-to-face experience using selected evidence-based knowledge exchange and dissemination strategies.

Ends.

HRB – KEDS 2015 Page 31 of 33

46.

Thrombosis risk in pregnancy: what you need to know

Dr Fionnuala Ní Áinle

University College Dublin

Lay summary

Venous thromboembolism (VTE; deep vein thrombosis and pulmonary embolism) remains a leading cause of death in pregnant and recently delivered women. Surviving mothers may have long-term disability. If VTE risk factors are identified, then preventative measures may be put in place. These interventions can be potentially life-saving. If a pregnant woman or recently delivered mother develops a blood clot then doctors from many different specialities collaborate to plan the patient's care together.

For all these reasons, it is very important that pregnant women are aware and educated about VTE during and after pregnancy. Patients can participate in their own care and self-advocate by having a knowledge of the baseline risks and an understanding of the factors that can increase this risk. These factors may be present from the beginning of pregnancy or before (for example, family history of thrombosis, genetic blood conditions that increase thrombosis risk and certain medical conditions) or may arise during pregnancy, sometimes in the late stages or at delivery (for example, preeclampsia, operative delivery and infection).

We aim to host a one-day educational event on pregnancy-associated thrombosis comprising lectures, smallgroup workshops and interactive learning modules aimed at pregnant women. Our faculty will consist of patient advocates and care providers of different specialities including medical, midwifery, physiotherapy and pharmacy colleagues. We will also compile a booklet that will help patients to recognize if they have risk factors and will help them to understand what to expect from risk factor assessment during and after their pregnancy.

Ends.

47.

Translating Critical Care Research into Clinical Practice

Professor Alistair Nichol

University College Dublin

Lay summary

We are currently funded by the HRB to conduct clinical trials to determine which treatments may help patients who are critically ill.

We have recently completed important research and the results will be published in a highly regarded medical journal in October. However it can take a long time between publication and improvements in patient care. One of the reasons is that there are hundreds of different journals for people to read and it can be hard to figure out what the results mean to patients.

We want to improve discussion of the results of clinical trials in a number of important ways - by creating podcasts and videocasts where we will interview experts discussing the findings of our's and others important trials, and twitter chats to allow as many interested people to openly discuss their findings. We

HRB – KEDS 2015 Page 32 of 33

want to work closely with a new website developed by an Irish doctor that makes it easier for busy doctors and nurses figure out what recent studies are worth reading more about (www.criticalcarereviews.com).

We also want to improve the understanding of how to design, complete and interpret clinical trials properly.

We will run a special course in Dublin to teach Irish researchers how to do the best research. Colleagues form intensive care clinical trials group in Australia and New Zealand will assist us conduct this course. In addition, we will video this and interview these doctors, so that we can make this resource available to all.

HRB – KEDS 2015 Page 33 of 33

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