Member’s story 2020: The Alzheimer Society of Ireland

As Policy and Research Manager at The Alzheimer Society of Ireland, being involved with HRCI has been immensely beneficial and a vital support to our research work. At ASI, we strive to empower the voice of people with dementia in research through our patient and public involvement (PPI) programme and support them in being proactively engaged in various research activities. Research is also crucial to evaluating our services for people with dementia and family carers. However, as a charity, ASI has relatively limited research resources. Therefore, the support and input from the HRCI network of charities and PPI SLG has been invaluable in progressing our research and PPI programme at ASI.

As a researcher, I have gained useful and important learnings from interactions and engagements with HRCI. When I joined ASI four years ago, HRCI were immensely welcoming and provided me with much needed supports to develop ASI’s first Research Strategy, 2017-2020. HRCI has guided my colleague and I, Dr Laura O’Philbin, in developing ASI’s first PPI programme: the Dementia Research Advisory Team. Membership of the PPI Shared Learning Group has offered constructive insight into addressing the challenges of PPI and developing effective PPI strategies. Dr Laura O’Philbin was delighted to present at HRCI’s 2019 conference on our PPI programme, and this gave us a wonderful opportunity to showcase and celebrate our work.

I was delighted to become a member of the Board of Directors in 2019, and also a member of the Advocacy and Communications Committee. This has been an excellent opportunity to support HRCI in its governance and decision-making.

In 2020, The ASI was successful in its application to the HRCI-HRB Shared Learning Scheme and is involved with Trinity College in undertaking a project exploring the needs of people with intellectual disability in accessing post-diagnostic supports. Without this funding opportunity, The ASI simply would not be in a position to resource this very important research project.

As HRCI continues its mission to lead a vibrant, impactful, and patient-led network of Irish health research charities, I look forward to continuing to support and contribute to the important work of HRCI.