On Feb 23rd 2022, at the invitation of Deputy Pádraig O’Sullivan, we had the opportunity to discuss rare diseases with Minister Stephen Donnelly, Minister Anne Rabbitte and other interested deputies and senators. We attended this event, held in advance of Rare Disease Day 2022, with colleagues from Rare Diseases Ireland, IPPOSI and CF Ireland, along with […]
In this section, you will find materials related to the HRCI work on Advocacy. We focus on increased funding for medical research in Ireland, enhanced conditions for research and access to medicines for all patients.
Our 2022 Position Paper is all about data and its importance to health research. The themes contained within are a priority for our member charities and have also been guided by the outcomes of the Irish Health Research Forum events, which HRCI runs. The Paper lays out three recommendations for politicians and policy makers and […]
In July 2021, HRCI completed a submission on a new National Research and Innovation Strategy. Among other things, our submission focuses on the importance of research and innovation in addressing societal needs, the need to value to the role of health research charities and to engage and involve the public in research. About the consultation […]
HRCI conducted a survey of its members in December 2020 to ascertain the impact of Covid-19 on Irish Health Research Charities. The results published in Feb 2021 demonstrate the impact on income, patients, research, and charity activities.
On January 28th we launched our 2021 position paper: Renewal through health research.
It lays out a series of critical health research actions to help create a post-Covid Ireland where healthcare is world-class and based on evidence.
It calls for:
Increased support for clinical research
Development of a national genomics strategy
PPI integrated into health research policy
Thank you to all HRCI members whose views and experiences have helped shaped the recommendations within and to our many supportive collaborators.
We welcome you using it and sharing it, to help achieve our common goals.
On 30 May 2019, a group of patient-focused organisations and other interested parties attended Health Research Charities Ireland (at the time called the Medical Research Charities Group) ‘Evidence for Advocacy’ seminar. They heard diverse perspectives from experts in research, policy and public relations (PR) and were also presented with case studies from a number of charities sharing refreshingly honest accounts of their experiences. By focusing on advocacy through a research lens, the event highlighted the power of taking an evidence-informed approach to support advocacy campaigns and to guide efforts to improve health.
This practical guide follows on from that seminar and draws on the information presented by the speakers, contributions from the floor, as well as the expertise of the authors and Health Research Charities Ireland (HRCI). We are very grateful to all who contributed.
Our Latest Report, and the first under the banner of the Health Research Charities Ireland. View or Download the PDF here.
On November 7th MRCG and IPPOSI will partner to host a meeting on access to medicines in Ireland. The meeting is open to MRCG members and IPPOSI patient members. The meeting will focus on providing patient representatives with an opportunity to discuss recent developments in the access to medicines space in Ireland, since the IPPOSI-MRCG […]
April 2018 The National Centre for Pharmacoeconomics (NCPE) performs detailed reviews of the clinical effectiveness and cost-effectiveness of new and existing drugs at the request of the Health Service Executive (HSE). In 2016, the NCPE launched the Patient Organisation Submission of Evidence process. The purpose of this process is to supplement its health technology assessment […]
MRCG Submission on the Health Information Policy Framework, submitted October 2017. While we welcome the policy framework as currently outlined, we provide below recommendations for inclusion in the final policy. Key messages • Research needs to feature more strongly in the policy and should be considered in a broad sense, to include the analysis of […]