Joan Jordan – thank you
IPPOSI wishes to thank Joan Jordan for her commitment and contribution to IPPOSI and EUPATI as she moves onto new challenges. Joan has been the EUPATI/IPPOSI Content Co-ordinator since September 2017, and has been a valued and proactive IPPOSI member for much longer. Joan participated in the first EUPATI Patient Expert Training Programme in 2016, and went on to mentor students of the pilot and second cycle of the IPPOSI Patient Education programme. We wish her well in her future endeavours.
National Screening Committee – Ireland
The Department of Health has published a call for expressions of interest for membership of the National Screening Committee – Ireland. You can see the list of expert roles – including two ‘public / patient voice’ places – on page 8 of this candidate information pack. The relevant DOH press release is available here. Closing date for applications is August 30th at 3pm. In a very welcome appointment, Professor Niall O’Higgins was appointed Chair of this committee earlier this month.
Patient Data Conference
Registrations for ‘Electronic Health Records: Getting it right from the start’ are progressing well so if you have not yet registered, we encourage you to do so here. An updated agenda will be published soon which includes a new patient-focused segment on the programme. For a list of confirmed speakers, go here.
Access to Medicines
On June 26th representatives of the Patient Charter Implementation Group met with John Hennessy of the HSE to discuss implementation of the recommendations. In early July IPPOSI was part of a delegation of the Rare Disease Taskforce who met with Mazar’s consulting company who are charged with conducting a review of the governance of the medicines assessment & reimbursement process in Ireland.
PPI in Health Economics, NUI Galway
With the increased emphasis on ensuring that the voice of the public and patient shapes health research, it is timely to explore what exactly PPI means for health economics research and for health economists. This is why the Health Economics and Policy Assessment Centre (HEPAC) in NUI Galway has organised a one-day seminar on the topic. The event encourages participants to consider why it is important to involve patients and the public in health economics research; what value PPI can bring, and the role of the public and patients in Health Technology Assessment. The seminar takes place on Aug 30th, go here for registration and further information.
EUPATI & EFO-EUPATI
EFO-EUPATI Work Package 2 and Work Package 4 as well as the EUPATI National Platforms (ENP) Executive Committee had a joint workshop in Basel on July 1st to capture the ENP views for future sustainability models. The report arising from this workshop will be published in August and will recommend a mixed business model for EUPATI sustainability. The creation of this business model is now the focus of Work Package 2. More information here.
IPPOSI Patient Education Programme
Students of the programme completed the second module (of three) of the programme last week with their sixth face-to-face meeting, in HPRA offices. This final session of the Regulatory Affairs module featured an excellent session on medical devices. Having completed the modules on clinical trials and regulatory affairs, the students have a month off before they begin the third and final module on Health Technology Assessment, which begins in September. Further information here.
International PPI Network – webinar series
The International Network for Public Involvement and Engagement in Health and Social Care Research was launched in London on 27th November 2017. The vision is for a world where patient and public involvement is an integral part of health research. The Network is launching a series of webinars, beginning August 20th. The opening webinar title is ‘’Patient and public involvement in research ‘What, why and how?’ It will be delivered by Dr Gary Hickey (INVOLVE UK) and Kati Turner, a Service User Researcher at St George’s University London. Registration is required to log on for these webinars, further information here.
HRB – Researcher in Spotlight
The July HRB newsletter featured an interview with Professor Declan Devane (NUI Galway, HRB-TMRN) as their ‘researcher in spotlight’ (article here). IPPOSI members may remember Professor Devane from his participation in the Patient-Centred Outcomes Measures conference in 2018, where he opened the lightning presentations with a brief, entertaining talk about Core Outcomes in Clinical Trials (6 min video, with slides included).