Newsletter March 2018

//Newsletter March 2018

Media training for Patient Members

There are three places available for IPPOSI patient members to attend a half-day media training workshop in Boston College, Dublin 2 on Wednesday 25th of April. The workshop runs from 10am – 2.30pm approx. If you would like to be considered, please email and the places will be allocated on a first-come, first-served basis.


IPPOSI will be hosting a webinar in April (date TBC) that provides international perspectives on processes to involve patient voices in health technology assessment (HTA). Speakers will be announced in the coming weeks, as will registration details, so keep an eye on the IPPOSI website.

HRB-TMRN International Advisory Board

IPPOSI Chief Executive Derick Mitchell has been appointed as the chairperson of the International Advisory Group of the Health Research Board’s Trials Methodology Research Network. Last month IPPOSI reported on the launch of HRB-TMRN’s PRioRiTy I Study.

Rare Disease Symposium – rescheduled

The rescheduled Rare Disease Symposium will now take place on May 3rd in the George Moore auditorium in UCD. IPPOSI and others in the rare disease community will be taking part, all other details, including registration, are here.

PPI in Research Conference NUI Galway

The third PPI in Healthcare Research conference, organised by the HRB Primary Care CTNI, will take place on Wednesday 25 April 2018, in the Institute for Lifecourse and Society (ILAS), NUI Galway. This year’s theme is Every Voice Matters, and includes recent graduate of the IPPOSI Patient Education programme, Wendy Costello of ICAN Ireland Registration / speaker details available here.

Gene Editing conference / Royal Irish Academy

As IPPOSI CEO, Derick Mitchell is a member of the Royal Irish Academy’s Life & Medical Sciences Committee.  Derick will chair a session during an upcoming RIA-hosted conference on April 26th on the ethical implications of Gene Editing Technologies (the CRISPR-Cas9 technique) for all of life and medical science. All details are available here, email for tickets (minor cost involved – patient organisations qualify for the lower rate of €10).

PPI in research UK

A set of UK national standards designed to improve the quality and consistency of public involvement in research was launched this month at the 2018 Patients First conference. The standards aim to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which improvement can be monitored.

Media coverage

The IPPOSI Chair and Chief executive co-wrote this piece about the need for the wider healthcare community to step up and systematically enable patient voices to be heard. It’s published on the website as part of a Life Sciences supplement.

Data Sharing

There’s a new survey that focuses on rare disease patient attitudes to data sharing. It is important that Irish patients participate in this survey, as the results will break down by region as well as disease, so please share the survey link with your own networks.


Researchers: The SPHeRE PhD Programme (Structured Population and Health Services-research Education) is now accepting applications for the next academic year (2018/19) from individual applicants and, in a new departure for the Programme, from Supervisors, Funding Bodies and Employers. More here.

2018-03-28T17:27:57+00:00 28 March 2018|Newsletters|0 Comments

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