Blog posts and HRCI in the media
HRCI blogs posts are mainly written by CEO, Dr Avril Kennan, with occasional guest posts by invited collaborators. You will also find links to news articles and radio appearances featuring HRCI in this section.
Dr Siobhán Hendrick (PhD), Patient and Public Involvement Liaison with the Rare Disease Clinical Trial Network, speaks to Niamh Cahill about patient engagement in research activities in the area of rare diseases.
The RDCTN is a patient-oriented research network based within the University College Dublin (UCD) Clinical Research Centre, which aims to increase the quantity and quality of rare disease clinical trials in Ireland. The PPI Liaison role is the first position of its kind here due to its collaboration between Health Research Charities Ireland (HRCI) and UCD.
Read the full article here https://bit.ly/MedIndoRDCTN
Guest Blog- Derek Stewart OBE, Patient Advocate and Honorary Professor, NUI Galway
Cooperating and Collaborating I recently had the great pleasure of talking with the members of Health Research Charities Ireland. The presentation was about the value of us, as patients and members of the public, getting interested in and becoming actively involved with researchers working in laboratories. I don’t mean that we patients and public doing […]
Rare Disease Research in Ireland: The State of Play
This piece by HRCI CEO, Dr Avril Kennan, appears in ‘An Easyguide to Rare Diseases in Ireland and Consensus for Action‘, published in February 2020, by the Rare Disease Taskforce. For most rare diseases there is no cure and the management of symptoms can be very hampered by a lack of knowledge and by limited […]
The expertise balance in patient and public involvement (PPI)
Universities and colleges are our great bastions of knowledge. Despite the many pressures on their time, one of the great joys of being an academic (I am using the term academic broadly) is in being paid to generate new knowledge. Lauding academics as knowledge holders and experts bestows on them the esteem required to ensure […]
Protecting and respecting patient data for health research
GDPR, the Health Research Regulations and their impact November 2018 As organisers of a Forum for leaders from across the Irish health research community, my organisation, the Medical Research Charities Group (MRCG), yesterday had the privilege to gather together a large group to discuss GDPR, the Irish Health Research Regulations 2018 (part of the Data Protection Act) and […]
The language of patient and public involvement and how not to mess it up
October 2018 Language is perhaps the most valuable tool that we have as humans. It is important in not only conveying our meaning, but also as an instrument of positive change. During numerous recent meetings I have found myself immersed in discussion on the language of patient and public involvement (PPI). These discussions have left […]
Why is developing a patient registry such a daunting task?
April 2018 I had lunch with a dear friend recently. It was one of those meals where everything is tiny, beautiful and surprises at every mouthful. My friend is the purest scientist I know and also a foodie, which I don’t believe is a coincidence. She thinks about the detail of things and about the […]
