Project Area: Health policy and systems research
Project Summary
The Problem:The “”Invisible”” Majority
Of the estimated 64,000 people living with dementia in Ireland, the vast majority are supported within general practice. Despite this, our national understanding of the condition relies almost exclusively on hospital-based data sources, such as memory clinics. This disconnect leaves a substantial proportion of patients effectively “”invisible”” to health planners, risking skewed resource allocation. This PhD project aims to bridge this critical information gap by co-designing a Primary Care Minimum Data Set (MDS), a digital tool that enables General Practitioners to report directly to the new Irish Dementia Registry.
The Opportunity
The timing for this work is ideal. With the Irish Dementia Registry officially launched in May 2025, Ireland is building the foundations of its national dementia infrastructure. This project offers a rare opportunity for a scholar to shape how this system functions for primary care before patterns of data collection become fixed. Uniquely, the project is directly linked to national governance: the Lead Supervisor serves as the sole GP representative on the Registry’s Governance Committee. This ensures the scholar’s research is not just an academic exercise but connects directly to decision-making at the National Office of Clinical Audit (NOCA).
The Research Plan
The project prioritises usability, aiming to capture essential health intelligence without creating administrative burden for GPs. The scholar will lead four interlinked stages:
1. Evidence Synthesis: A systematic review will examine international best practices, specifically identifying data dictionaries from established registries in jurisdictions like Sweden (SveDem) and Australia (ADNeT).
2. Consensus: A Delphi study will be conducted with GPs, dementia specialists and the Alzheimer Society of Ireland’s Patient and Public Involvement (PPI) group, the Dementia Research Advisory Team (DRAT) to agree on a core set of variables, balancing clinical utility with feasibility.
3. Digital Co-design: The scholar will co-develop technical definitions mapped to SNOMED CT standards and prototype the interface with leading GP software providers to ensure seamless IT workflow integration.
4. Real-World Pilot: The dataset will be stress-tested in “”sentinel”” practices to evaluate technical performance, culminating in a co-produced “”Implementation Roadmap”” for national scale-up.
Impact
Throughout the project, meaningful PPI will ensure the data collected reflects the lived experience of dementia. By making visible those currently missing from national datasets, this research will support equitable, data-driven service planning. For the scholar, this project offers a launchpad into a career at the cutting edge of digital health, implementation science and health policy.
Skills Required
(If applying for this project you will be asked to outline how you meet the skills required below)
We are seeking a motivated scholar to undertake this interdisciplinary project. As the research involves working with GPs, patients and data systems, the ideal candidate will be organised, adaptable and eager to learn new methodologies.
Essential Skills:
- Academic Background: A primary degree in a relevant discipline (e.g. Health Services Research, Public Health, Psychology, Social Science or a clinical discipline).
- Organisational Skills: Strong time-management skills are essential, as the project involves coordinating fieldwork across multiple GP practices.
- Communication: Good interpersonal skills to engage constructively with diverse groups, from patients (PPI) to busy clinicians.
- Writing & Analysis: A solid grounding in basic research methods and the ability to write clearly for academic audiences.
Desirable Skills (Training Provided):
- Methodological Interest: Experience with qualitative or mixed-methods research is an advantage, though full training will be provided.
- Topic Interest: A genuine interest in dementia care, ageing, or primary care services.
- Digital Health Awareness: Technical coding skills are not required. However, an interest in how technology and data can support patient care (Health Informatics) would be beneficial.
- PPI Experience: Previous experience volunteering or working with patient groups or older adults is desirable but not essential.
Personal Attributes:
- Eagerness to Learn: A willingness to develop skills in new areas, such as consensus methods (Delphi) and implementation science, supported by the supervisory team.
- Empathy: A commitment to conducting research that is respectful of people living with dementia.
Supervisory team:
Prof. Tony Foley PI/Primary Supervisor
Professor of General Practice, Department of General Practice, University College Cork
Co-supervisors:
- Dr. Antoinette O’Connor, Consultant Neurologist and Clinical Lead, Irish Dementia Registry, National Office of Clinical Audit (NOCA) and Clinical Associate Professor, Trinity College Dublin
- Prof. Ciara Heavin, Professor and Chair of Business Analytics, University College Cork.
- Dr Hannah Christie, Lecturer, School of Population Health, Royal College of Surgeons of Ireland (RCSI), University of Medicine and Health Sciences.
Dr Antoinette O’Connor has over 10 years of experience in general neurology, with specific training and expertise in the area of clinical trials, cognitive assessment, use and validation of cognitive screening tools, diagnosis and management of Alzheimer’s disease, dementia, and cohort studies of individuals with genetically determined Alzheimer’s disease. Over the course of her PhD at University College London and her clinical fellowship in neurodegenerative diseases, she gained broad-based research training – research focused on novel biomarkers of familial Alzheimer’s disease and was recognised by the RCPI William Stokes Award for excellent research carried out by a Higher Specialist Trainee. Her research has contributed to progress towards integrating blood tests into the clinical assessment of persons presenting with new cognitive complaints, being cited in the development framework for Alzheimer’s disease biomarkers and the Alzheimer’s Association appropriate use recommendations for blood biomarkers. Since returning to Ireland, she has become co- investigator in Ireland’s first clinical biobank for research in neurodegenerative diseases, become a steering group member of Dementia Trials Ireland and a co-investigator for Dementia Research Network Ireland.
She is committed to working with policymakers and knowledge users to improve the lives of people living with dementia. She is the Clinical Lead for the Irish Dementia Registry, National Office of Clinical Audit (NOCA).
Prof. Ciara Heavin is Professor and Chair of Business Analytics at University College Cork (UCC). Her research lies at the intersection of digital transformation, decision support, and health informatics, with a strong focus on developing data-driven solutions to enhance healthcare delivery and patient outcomes. She has published over 200 peer-reviewed outputs, including journal articles, conference papers, and book chapters, and co-authored several books on decision support and digital transformation. As a funded IS researcher, Prof. Heavin has secured over €1.6 million as Principal Investigator and approximately €5.6 million as Co-PI. She has extensive experience in multidisciplinary collaboration, having led projects funded by Enterprise Ireland, Research Ireland, the Irish Research Council, and industry partners. She has led impactful projects across diverse contexts, including healthcare initiatives in Nigeria and Malawi.
Notably, Prof. Heavin leads the Enterprise Ireland-funded CommPAL project, a machine learning/AI solution that aims to optimise resource allocation and healthcare professional communication, supporting personalised care planning, and ultimately improving the quality of life for patients, their families, and communities. This project received the 2024 University Research Award for Interdisciplinary Research of the Year – CommPAL: AI in Palliative Care, Vice President for Research & Innovation Award, UCC.
Prof. Heavin serves as Co-Editor-in-Chief of the Journal of Decision Systems and chairs IFIP Working Group 8.3 Decision Support. Beyond research, Prof. Heavin chairs the University Ethics Committee (since 2021) at UCC. She co-chaired Cork University Business School’s Athena Swan Bronze Application, awarded Dec ’24. She is an external Advisor, Health Services Executive (Systematised Nomenclature of Medicine) SNOMED Governance Board (Jan ’22 – present) and is a member of the CORU Counsellors and Psychotherapists Board (Jun ’25 – present).
Dr Hannah Christie is a psychologist and lecturer at the School of Population Health, RCSI University of Medicine and Health Sciences. Her research focuses on dementia, digital health, implementation science, and health equity, examining how social, structural, cultural, and technological factors shape experiences of cognitive ageing and care, particularly among underserved populations.
Drawing on expertise in psychosocial theory, qualitative methods, intervention development, artificial intelligence, and implementation science, she leads interdisciplinary research addressing inequities in dementia and other forms of cognitive ageing, with implications for care, digital innovation, and policy reform.
Dr Christie currently co-supervises two PhD projects (one exploring large language models in dementia care and another examining cultural needs in dementia care) and supervises MSc research on dementia care within the Irish prison system. She has published over 21 peer-reviewed articles and brings an international academic background spanning Belgium, the Netherlands, the UK, and Ireland. She has contributed to the acquisition and coordination of major international research consortia, including SPREAD+ and QoLead, and has secured significant individual research funding. Her work is driven by a commitment to translating research into tangible improvements in policy, services, and technology for diverse ageing communities.
This project will be based in UCC
