Irish Platform for Patient Organisations, Science & Industry

IPPOSI Conference + AGM: Register now!

IPPOSI is pleased to invite you to our Annual General Meeting and Conference, which will focus on the topic of Electronic Health Records.  The event will take place on Monday, October 7th, in the Hilton Hotel, Dublin 2 – register here. More about the conference and its rationale here, Further conference updates will be posted on our website, and on IPPOSI social media.

Training Science & Industry on Patient Engagement

In its history, EUPATI has been approached several times by representatives (of pharma and academia) seeking training similar to that provided to patient advocates – but tailored to the needs of science and industry. EUPATI is now meeting this demand with the first ‘EUPATI FUNDAMENTALS’ training for academia and industry professionals, which will take place on 21 November 2019 in Brussels. This training in Patient Engagement is designed to address a gap preventing more effective patient engagement. More information here, or you can apply here.

Data Saves Lives

IPPOSI is a supporting member of a new European initiative called ‘Data Saves Lives’. The initiative takes as its vision a Europe where informed data sharing supports health and scientific research to meet patient needs. At a practical level, the project will create a European Health Data Portal that builds understanding of the importance of data and how it is used, while providing a trusted environment for dialogue about its use in Europe. The official launch of Data Saves Lives will take place in September 2019.

EUPATI National Platforms (ENPs) AGM

This year’s EUPATI AGM focused on developing a common message that explains what ENPs do, and are capable of doing. The purpose of this work is to attract new members, funders and partner organisations around Europe, as this was identified as a common problem throughout Europe. Attendees broke into three groups (by ENP region) to help develop different communications tools – a leaflet, set of presentation slides, and an animated clip – that each ENP can use in their own country. A report from the meeting will be published shortly and shared through IPPOSI & EUPATI channels.

Patient Expert Profiles

IPPOSI is please to announce the upload of a further ten patient expert profiles onto the IPPOSI website. These profiles have been drawn from the participants of the pilot Patient Education Programme (2017-2018), congratulations and thanks to those graduates who are in a position to put their training to use.

IMI Call for Patient Experts

The Innovative Medicines Initiative has published a call for expressions of interest in joining a pool of European patient experts with a ‘strong interest in patient-centred innovation’. Interested parties should read this document first, thereafter the application form is available here. The deadline is July 16th 2019 at 5pm CEST – Brussels time.

COMET / ‘ELICIT’ survey on informed consent

Patients and patient advocates are invited to take part in the COMET Initiative’s ELICIT Study (survey), which is being run through the University of Aberdeen, Scotland. The survey is still open, and it seeks input on the kinds of issues that matter to patients when they undergo the ‘informed consent’ process of a clinical trial. The survey is open to people in Ireland, and you are not required to have any previous experience of clinical trials to complete the survey.

European Connected Health Alliance

IPPOSI is pleased to report it has become a member of the European Connected Health Alliance. Based in Belfast, the Alliance is a not-for-profit organisation that connects 78 countries through a network of digital health alliances, and IPPOSI is delighted to call itself a member. More on the Alliance here.

2019-06-20T11:15:32+01:0020 June 2019|Newsletters|0 Comments

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