IPPOSI Conference on Health Data Sharing

David is the CEO of the Irish Skin Foundation. Appointed CEO in 2017, David’s background includes health advisory, government relations, and public affairs, having worked in Diabetes Ireland, the Department of Health, and in Dáil Éireann. David is a member of the board of Global Skin since 2015, chairperson of IPPOSI, and holds an MA in history and MSc in business.

Tanja is a founding member of Long Covid Advocacy Ireland. When searching for advocacy groups early on in her Long Covid journey, she found there were none, so helped start one. An active business professional and mother before Covid hit, she has been living with Long Covid since the first wave of Covid-19 infections in March 2020.

Early on in her experience with Long Covid, Tanja experienced all the gaslighting, and lack of joined-up thinking/services that Ireland’s health system had to offer. As a result, she turned to international research and joined advocacy groups internationally to bio-hack her Long Covid. Her integrated approach to resolving her own chronic illness has led her to realise that we are missing a trick when it comes to post-viral illness by narrowly relying on the medical model alone to “fix” the problem.

Tanja regularly participates in international long-covid research and is actively involved in Long Covid research in Ireland. A recent publication in conjunction with APC Microbiome, UCC, and CUH was the first of its kind in Ireland, where a patient was involved in the study design and implementation.

Research and PPI are two current focus areas in Tanja’s Long Covid advocacy work. She is a patient representative for Long Covid with the Irish Platform for Patient Organisations, Science & Industry (IPOSSI) at the National Irish Covid Biobank (NICB). She continues to be involved in designing and implementing research as a Long Covid advocate and would like to see all long covid research, diagnostics, treatment guidelines, and healthcare delivery involve significant and ongoing patient consultation.

Publications
https://hrbopenresearch.org/articles/5-31/v1#referee-response-32610

Glossary of Terms

Integrative medicine employs an evidence-based approach to treat the entire individual, including
the mind, body, and spirit. Integrative medicine uses a mix of therapies that take into account
your physical, emotional, mental, and spiritual needs. It “integrates” the conventional medical
model of western medicine with functional medicine, which focuses on the root cause of illness,
for optimal health and healing.

Personal and Public Involvement (PPI) is the term used to describe the concept of involving
ordinary people and local communities in the planning, commissioning, delivery, and evaluation
of the health and social care services they receive.

Muiris O’Connor is Assistant Secretary in the Department of Health, joining in 2015 to head up the R&D and Health Analytics Division. The establishment of this Division reflects the Department’s commitment to evidence-based approaches to policy and to the promotion of research and innovation in Irish health and social care. As the responsibilities encompass international policy, Muiris has been centrally involved in the Department of Health’s management of Brexit and in coordination of the wider health sector response to Brexit. Over recent years, the Division has expanded to include Medicines Unit, Health Information Policy Unit and Policy, Strategy and Integration Unit as well as key aspects of Sláintecare Implementation.

During the pandemic, Muiris focused on the contribution of research and innovation in the fight against COVID and on harnessing the potential of public sector innovation involving HSE, HRB, CSO, OGCIO, OSI and AGS in collaboration with academia and enterprise. Outputs of this work include the CSO Data Hub, the COVID Tracker App, the WHO Solidarity Trials and the delivery of EU Digital COVID Certificates. He is now centrally involved in the implementation of Regional Health Areas and in the work on the Health Information Bill.

Prior to joining the Department of Health, Muiris worked in the Higher Education Authority (HEA), the Department of Education and Skills, the Conference of Religious of Ireland (CORI), the Economic and Social Research Institute (ESRI) and the National University of Ireland, Galway (NUIG).

Professor Richard Greene, a graduate of Trinity College Dublin, gained much of his clinical experience at the Coombe Women’s and Infants’ University Hospital, Dublin and as a Fellow in Maternal-Fetal Medicine in Thomas Jefferson University Hospital, Philadelphia, USA. He is a Consultant in Obstetrics and Gynaecology; Director of the National Perinatal Epidemiology Centre (NPEC) and Professor of Clinical Obstetrics, UCC. He is seconded to his present role as the CCIO working between the office of the Chief Information Officer and the Office of the Chief Clinical officer; the aim of the post is to assist the required multidisciplinary working for a digital health future.

Management experience in healthcare includes being a key member of the team in commissioning and establishing the new maternity services at CUMH, being the first clinical Director for the Cork University Hospital and the development of NPEC as a national audit service for maternity services. His research interests include maternal-fetal medicine, epidemiology, health services research incorporating quality of service and the use of Information Technology towards the improvement of healthcare

His digital health experience includes concept to go-live of a national electronic health record for maternity services and he remains centrally involved in the Maternal Newborn Clinical Management System (MN_CMS) project team; development of the business case for a national eHR, the Covid Care tracker system in March 2020 and various other projects in digital health over the last 2 years. He believes digital data and information flow between patients/service users and healthcare staff is a key enabler healthcare transformation in Ireland.

Loretto Grogan is the National Clinical Information Officer for Nursing and Midwifery in the Health Service Executive. She qualified as a Registered General Nurse from Beaumont Hospital in 1994 and has further studies in information systems, statistics, health economics, project management and an MSc in Health Informatics. She is published in a number of peer reviewed journals. Loretto’s professional background is in acute and community nursing, health research, health informatics, project management, data management, quality improvement, and leadership development. She has worked in a variety of clinical, management, research and project management roles within and outside of the health service.

Originally from France, Pascal landed on Irish shores in 1998. While he has worked in France for 8 years, he has spent most of his professional life in Ireland working for large corporations, SMEs, Start Ups, Not For Profit, Charities or Social Enterprises.

Pascal is currently the CEO of Migraine Ireland, a Board Member for IPPOSI, Board Member and Vice chairman of NAI (Neurological Alliance of Ireland), and the Chairman of the Practitioner Council at SERI (Social Enterprise Republic Ireland).

Anca Toma joined EPF as Executive Director in March 2022. Her career started in the Romanian EU accession negotiations team, continued as a consultant in a public affairs and communications agency in Brussels, followed by ten years in Smoke Free Partnership, a European coalition of NGOs working to advance tobacco control for cancer and NCD prevention. Anca has over 15 years of experience in European health policy working in policy advocacy, strategic communications, developing and coordinating successful pan-European advocacy campaigns, and leading her team and organisation. Anca is a political science graduate of the University of Bucharest and holds a masters in European politics and administration from the College of Europe.

Prof Colleran is the head of department in radiology in the National Maternity Hospital and a Consultant Paediatric Radiologist in CHI at Temple Street. She graduated from NUI, Galway in 2005 with a first class honours degree and completed radiology training in the Mater Misericordiae University Hospital before completing 2 years Paediatric Radiology fellowship in Harvard Medical School and Boston Children’s Hospital from 2014-16. In 2015-16 she was Chief Fellow in Paediatric Radiology and underwent subspecialty training in Fetal MR. Prof Colleran is the Radiology lead for the HSE’s National Fetal MRI program. Fetal and neuro MR and medical education are her areas of academic interest. She is also the Vice President of the Irish Hospital Consultants Association.

Ananda Plate is the Executive Director of Patvocates Research, a Patvocates business unit dedicated to patient evidence and research. Her main area of work in Patvocates Research is the generation of patient evidence for the purpose of informing the decision-making process of relevant stakeholders in healthcare, such as, but not limited to, patient advocacy organisations, regulators, HTA bodies, pharmaceutical companies and clinicians.

Ananda holds a law degree from the University of Barcelona and a master’s degree in Health Policy, Planning and Financing from the London School of Economics and Political Science and the London School of Hygiene and Tropical Medicine. Ananda also completed the EUPATI training course for patient advocates. Her main field of interest is cross-border healthcare within the European Union, health data protection, patient involvement in R&D and evidence-based patient advocacy.

Ananda became involved in patient advocacy after being diagnosed with cancer in 2006. Since then, she has been deeply involved in the cancer patient community.

Before joining Patvocates, Ananda was the CEO of Myeloma Patients Europe (MPE), leading the Pan-European patient organisation for myeloma and AL-Amyloidosis patients for over ten years. After leaving her CEO position, she was elected board member of MPE and continues as co-chair of the MPE Community Advisory Board. She is also co-founder of the Workgroup of European Cancer Patient Advocacy Networks (WECAN) where she acted as chair in 2019-2020.

Among other past advocacy roles are the representation of MPE at the Patients’ and Consumers’ Working Party of the European Medicines Agency, a member of the ESMO Patient Advocacy Working Group and EHA Patient Advocacy Workgroup, the European Cancer Organisations Patient Advisory Committee, as well as ePAG on the European Reference Network EuroBloodNet. She was also a member of the Clinical Ethics Committee of a hospital near Barcelona for several years and is currently a member of the Ethics Committee at Chamber of Physicians Bavaria, Germany.

Dr Frances Burns (Department of Health NI) is lead for the Northern Ireland Trust Research Environment (NITRE) developing data provisioning and connectivity for evidence creation and research within Health and Social Care Northern Ireland. She is Director of the Northern Ireland Public Data Panel (NIPDP), a new public forum dedicated to consider how data is used in research, innovation and decision-making in Northern Ireland. Within her Departmental role she is leading the introduction of regulations for secondary use of Health and Social Care Data in Northern Ireland. Frances has previously worked with the Administrative Data Research Northern Ireland (ADR NI) and managed the establishment of the Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA).

CIO of the Year 2023 recipient (non profit), Clare is currently Managing Director of HD Health, digital health and clinical advisory firm specialising in digital transformation, business development, process optimisation and medical device software. As part of this she works as Programme Director for Leading Digital Health Transformation at RCSI. Clare also provides services to fulfil the role of Chief Commercial Officer at Infocare Healthcare, a state of the art clinical workflow solution provider internationally, where she also holds a position as a Non Executive Director. She also advises on RPA and Intelligent Automation opportunities across the public and private sector in partnership with ABP Innovation.  

Clare was previously Executive Director, Digital Health Transformation at HealthTech Ireland, the trade association in Ireland representing Digital Health, Diagnostics and Medtech industry. Prior to this, Clare has worked in various senior digital health and governance roles across industry and the health service, in the Department of Health, HIQA, and the HSE as National Programme Manager for the Acute Medicine Programme. 

Clare holds a Bachelor of Business Information Systems and an MSc in Health Informatics from Trinity College, Dublin. She is involved in the EU Commission funded EIT Health mentorship programme mentoring early stage digital health companies, and also her alumni mentorship programme, mentoring students and recent graduates with an interest in the digital health space.  

Frankie Prendergast is Digital Health Applications Programme Manager at St Patrick’s Mental Health Services (SPMHS). She has over 35 years of clinical, healthcare technology and business change management experience in the UK and Ireland, across the private and public sectors. She takes ideas from inception through to delivery and has demonstrable success in delivering digital health solutions that enable service users’ rights to contribute and inform their recovery and wellbeing, as well as experience in helping clinical services adapt to new models of care and become more sustainable. During her time at SPMHS, she has led the solutions delivery to support the enablement of remote care and Homecare delivery models and the implementation and ongoing development of ‘Your Portal’. Other contributions include the establishment of the Service User IT Support (SUITS) service and the Service User Remote Care Advisory Forum.

Joan is currently the General Manager of COPD Support Ireland. Prior to joining COPD Support Ireland in 2020, she worked as a Respiratory Physiotherapist across a variety of public and private hospital settings from when she qualified from U.L. in 2006.

Joan is mum to Ella 7yrs and Leo 5years and, following the diagnosis of Leo with Angelman Syndrome in 2018, she has undertaken a variety of Advocacy and Patient Partnership roles including Parent Ambassador for the Jack and Jill Children’s Foundation, patient representative on the HIQA led Children’s Reference Group (CRG) for Overarching National Standards for the Care and Support of Children using Health and Social Care Services, patient partner on the National Quality and Patient Safety Directorate Management Team and, in early 2023, was appointed as a patient partner to the HSE Board Planning and Performance Committee. Joan joined the Board of IPPOSI in 2021 and is passionate about the value patient partnerships can add when utilised throughout healthcare organisational structures – from high-level planning and policy to local implementation and delivery.

Eamon has worked in IT with the national Health Service Executive in Ireland for almost 20 years, now working as Digital Health Specialist in the Department of Health. Involved in the successful delivery of various regional projects and national projects, Eamon is now working on international projects also.

Maria McCann is an organisational psychologist and Director of the Health Identity Management Services in HSE. This role sits under operations in the HSE. She is responsible for the identity management services of the HSE in particular the delivery of the Individual Health Identifier (IHI) for individuals as well as unique identifiers for practitioners of health services; is the lead for the Data and Informatics Programme for the HSE UKR crisis response and is leading a programme of work on Human Digital Transformation. She provides executive level advice, guidance and support on all areas of transformation with a specific focus on; organisational development, engagement, innovation and digital change. Maria is passionate about stakeholder engagement and the creation of a collaboration environment for organisations working with the HSE. A passionate advocate on how technology can impact healthcare and its delivery, Maria and her colleagues seek to represent Ireland nationally and internationally, building the reputation of HSE as an open and transparent organisation. With more than 25 years in people focused roles in the public and private sector, Maria uses this experience to put people at the centre of everything she does. Maria is a board member for the charity Spunout, was awarded CIO and IT Leaders Crisis Technology Award in 2023 and believes strongly on the positive impact of diversity and inclusion to drive change. Maria has an undergraduate degree in Psychology, an MSc in Computers and Information Systems and an MSc in Organisational Psychology.

Kathryn Kissane is the eHealth Deputy Delivery Director for Engagement & Delivery.  Following a career in the Education sector and founding a programme for international students in Ireland, she began working in Healthcare IT, managing the Claims Processing Centre for the HSE Health Repayment Scheme and as the Business-IT Manager for the Fair Deal system.  Since joining HSE eHealth and Disruptive Technologies and as the ICT Programme Manager for the Shared Care Record, she is now working to enable the sharing of standardised, interoperable digital health records for both healthcare professionals and citizens, nationally and across borders.

Dr Sarah McLoughlin is the Public and Patient Involvement (PPI) Coordinator of Cancer Trials Ireland. She has a background in biology and is a patient advocate with experience working in cross-disease areas in research and healthcare. Sarah is a member of the HSE board, one of the first members to be appointed with patient advocacy experience. She is a patient representative in a range of committees, projects and organisation, including the National Research Ethics Committee for Medical Devices (NREC-MD), Irish Association for Cancer Research, Trinity St. James’s Cancer Institute Education Advisory Board, the Ireland-Northern Ireland-National Cancer Institute Cancer Consortium and the National Irish COVID-19 Biobank development project. Sarah’s focus is on including the patient voice as a partner in constructive conversations in healthcare and research.

Orla Gogarty, MScOT, MBA, PGDip Leadership, is Director of Digital Health, Transformation and Partnership at St Patricks’ Mental Health Services.

Drawing on over 40 years of clinical management and academic experience in the UK, Canada, and Ireland, across the public and private sectors, Orla has a proven track record in delivering strategic technology and transformation projects, including Ireland’s first integrated electronic mental health record and Service User Portal. Orla also supported St Patrick’s Mental Health Services to introduce remote services and remote working at scale during the pandemic.

A positive and collaborative leader, Orla enjoys building and working with cross-functional teams in healthcare to deliver enabling technologies to clinicians and service users that support intervention, safe treatment and empower recovery.

Fiona is the Business Manager for the MN-CMS National Project Team.

Fiona is a Registered General Nurse and a Registered Midwife with over 30 years clinical experience both in Ireland and the UK holding a number of clinical and managerial posts. Fiona joined the MN-CMS Project in 2014 as the Project Manager for the successful implementation of MN-CMS in University Hospital Kerry in March 2017 and then joined the MN-CMS National Project Team as the Business Manager in April 2018.

Fiona is responsible for the roll-out out of MN-CMS, from a clinical perspective, to all maternity hospitals/units in Ireland, ensuring the system is implemented to meet the business needs of the National Women and Infants Health Programme.

Fiona also provides clinical leadership and management to the MN-CMS Clinical Workstream leads which include: Maternity, NICU, Gynaecology, Risk Management and Change and Transformation.

As Business Manager Fiona is looking forward to working closely with

Barbara joined HIQA in 2009 and has led on key programmes of work in relation to health information in Ireland, such as national data collections, information governance, data quality and secondary use of health information. In the past number of years, Barbara has led on the development of information management standards, guidance, and also established a review programme to assess compliance with the information management standards.

She has been a member of numerous national committees and groups in relation to health information such as HSE National Data Dictionary governance group, the Department of Health/CSO health data liaison group, and European committees in relation to the EU TEHDAS project.

Prior to joining HIQA, Barbara has previously worked in public health and epidemiology roles in the Food Safety Authority of Ireland (FSAI) and the Health Protection Surveillance Centre (HPSC) for over 10 years. She holds a PhD in molecular virology, and postgraduate qualifications in epidemiology, project management and governance.

Dr Avril Kennan is CEO of Health Research Charities Ireland (HRCI), an organisation that supports a community of 40 charities to engage in all aspects of health research. Under her leadership, HRCI runs the Irish Health Research Forum (IHRF), manages a funding scheme for patient-focused research projects in partnership with the Health Research Board and hosts a patient and public involvement (PPI) ‘Shared Learning Group’ for over 30 charities. HRCI is also a national partner on the National PPI Ignite Network.

Avril’s PhD and subsequent lab experience are in the field of molecular genetics. In previous roles in DEBRA Ireland and DEBRA International, she drove a range of patient-focused international initiatives. She’s passionate about improving lives through research.

Mark is Professor of Nephrology in Trinity College Dublin and consultant nephrologist in Tallaght and Beaumont Hospitals.

After graduating from medicine in Trinity he completed his Nephrology training in North London in 2006. During this time, he obtained a PhD from Imperial College London, and post-doctoral time spent at Hammersmith Hospital, University of Birmingham and University College London consolidated a translational research programme focused on autoimmunity and systemic vasculitis. His research interests include novel model systems for investigating the pathogenesis of ANCA vasculitis, biomarker development and application of data science techniques to study autoimmunity. He leads the HELICAL, PARADISE and FAIRVASC EU consortia, which seek to apply novel data science and linkage techniques to health data. He has published over 140 peer-reviewed manuscripts and was awarded the President of Ireland Young Researcher Award in 2012. He is a co-founder and autoimmune lead of ERN-RITA, the rare immune disorders European Reference Network, lead of the European Vasculitis Society Registry initiative, chair of the RITA-Ireland Vasculitis Network and co-founder of UKIVAS, the vasculitis society of UK and Ireland.

Bernard Gloster took up the post of Chief Executive Officer of the HSE in March 2023. He has worked in health and social services for over 34 years, and rejoined the HSE from the state Child and Family Agency Tusla where he served as Chief Executive Officer from September 2019. Prior to that he held several senior management positions within the HSE including Chief Officer of HSE Mid West Community Healthcare, and he worked in and managed in both community and acute hospital operations. He is a social care worker by profession, holds an MBA from Oxford Brookes University and an MSc in Management Practice from UCC.

Maria is a Health Information Programme Lead in the Health Information and Standards Directorate, HIQA. She is leading on the development of ‘National Standards for Information Management in health and social care’ and was responsible for delivering the recent publication ‘Key consideration to inform policy for the collection, use and sharing of health and social care information’. Maria was also involved in establishing the review programme to assess compliance with the Information Management Standards within national health and social care data collections. She has worked with HIQA since 2017, prior to which she gained valuable experience in health information management in both academic and clinical settings. She completed a PhD through the SPHeRE (Structured Population and Health-services Research Education) Programme in 2014.

Barry Lowry has been the Chief Information Officer for the Irish Government since April 2016 with the primary task of taking forward the Government’s digital agenda. This includes developing the use of shared services, digital ID, digital services and data to better serve the people of Ireland and ensure that Ireland is well-placed to influence and exemplify the EUʼs digital ambitions for 2030.

Barry is also the Chief Adviser to Government on all Digital matters affecting the State and its citizens.

Barry was previously the Director for IT Shared Services and Strategy and Head of the IT Profession within the Northern Ireland Civil Service.

Barry is a Fellow of the Irish and British Computer Societies and is a former winner of the BCS Northern Ireland IT Professional of the Year. He was awarded an O.B.E. for services to the Northern Ireland Government and the Northern Ireland Computer Industry in 2017 and an Honorary Fellowship of the Analytics Institute of Ireland in 2022.

Derick Mitchell, PhD (@DerickOMisteal) is the Chief Executive Officer of IPPOSI. Derick has a background in research, strategy and advocacy from over 12 years’ experience spanning a number of leadership roles in research and multi-stakeholder engagement in Ireland and at the EU-level. Derick has a strong track record in collaborating to influence healthcare policy with the goals of enhancing research infrastructure, increasing patient involvement and improving access to treatments. Derick believes in the power of a united voice when it comes to patient advocacy and the central role of patients and their representative organisations in healthcare and research.

At an international level, Derick is an elected board member of the European Patients Academy (EUPATI) Foundation, a global initiative which is training patients to become involved in the medicines R&D process, and has spread the IPPOSI public-private partnership model to over 20 countries. Derick is  chairperson of the European patient representative round-table of ISPOR – the Professional Society for Health Economics and Outcomes Research; a Patient Advisor to the OECD Patient-Reported Indicator Survey (PaRiS) initiative as well as a founding member of the European Patients’ Forum-led DataSavesLives.eu initiative.

In Ireland, Derick serves on the advisory boards and steering committees of a number of health-related initiatives including Health Innovation Hub Ireland, EHealth Ireland, a number of HIQA Advisory committees, as well as the Medical & Life Sciences Committee of the Royal Irish Academy. Derick is chairperson of the Scientific Advisory Board of the HRB-Trials Methodology Research Network (HRB-TMRN) and a member of the Governance Committee of the Precision Oncology Ireland research consortium.

Derick holds a Bachelor of Science degree in Biotechnology from NUI Galway and a PhD in Molecular Medicine from University College Dublin. Outside of IPPOSI, Derick spends his free time attempting to influence his two young daughters.

Dr Sarah Barry PhD is Senior Lecturer and Director of Academic Programmes at the School of Population Health, RCSI. She has held Director roles at Trinity College Dublin and the National HRB-funded SPHeRE PhD training programme. She is a member of the Performance and Planning Committee of the HSE Board since 2020 and was recently appointed by the Minister for Health to the Board of the HRB.  Sarah’s research and policy engagement work focuses on delivery of integrated care in complex health and social care systems. She is a member of the All-Ireland Steering Group of the International Foundation for Integrated Care (IFIC) and has co-produced research on integrated care with the National Integrated Care Programme for Older Persons (NICPOP), and Community Health Networks (CHNs). Sarah was a member of the technical team that supported the All-Party Oíreachtas Committee in producing its Sláintecare Report in 2017 setting the agenda for Health System Reform in Ireland.

Markus graduated from medical school at the University of Würzburg in Germany and did most of his paediatric training in and around Alder Hey Children’s Hospital in Liverpool. From 2005 onwards, he worked as a consultant paediatrician in North Wales until taking up his current position as Chief Medical Information Officer (CMIO) for CHI in September 2021. He developed an interest in clinical informatics early on as a consultant and became the first Chief Clinical Information Officer for North Wales in 2017. He was part of the second cohort at the NHS Digital Academy in 2019-20 finishing with a postgraduate diploma in digital health leadership. As the CMIO for CHI he is part of the only CxIO team in Ireland representing all clinical areas. He has a particular interest in evidence based clinical informatics.

Dr Hesseling will be a part of our panel discussion, “Starting to Share: How do we build our health data future?”

Dr. Sarah Craig is currently Head of National Health Information Systems at the Health Research Board. This role includes the overall management of four national service planning and surveillance databases in the areas of disability, mental health and alcohol and drugs. She also plays a cross-organisational strategic role in the HRB. She previously worked in the National Council for Special Education and the National Economic and Social Council where she held research and policy roles. Her doctoral research centred on the state of health information policy and practice in Ireland.