Blog & Videos Blog posts by Dr. Avril Kennan, CEO, Health Research Charities Ireland
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 […]
