EFO EUPATI (Ensuring the Future of EUPATI), the new IMI-funded project supporting EUPATI, commenced as of 1 September 2018. It will run for two years to August 2020. The EFO-EUPATI project has 3 main objectives:
Develop a viable sustainability / business model for the medium-long term future of EUPATI activities.
Create a Patient Education and Engagement Portal that will host relevant information and resources for patients and other stakeholders to ensure meaningful and value adding patient engagement in medicines R&D.
Strengthen the coordination and impact of the existing EUPATI National Platform (ENP) network, through promotion of collaboration, knowledge exchange and sharing.
IPPOSI is playing a major role in the project as a Workpackage Leader for objective three above.
IPPOSI is delighted to introduce two new members to the growing IPPOSI staff team, namely: Caroline Whelan, our new EUPATI National Platform Officer as part of the EFO-EUPATI project, and Marie Boran, our new Patient Education Programme Coordinator. Both bring a wealth of experience from science policy and science communication fields, respectively. You can read Caroline’s and Marie’s profiles on our staff page here.
Joint Statement on Health Technology Assessment in Europe
This week, 14 European patient organisations & federations have launched a statement calling on European institutions to adopt appropriate measures to fully incorporate meaningful involvement of patients in EU cooperation on Health Technology Assessment (HTA). That statement is available here. The Commission proposal on joint clinical assessments continues to make its way through the European legislature. IPPOSI’s previous statement on the Commission proposal is available here.
Integrated Care Forum Meeting – December 5th
Derick Mitchell will be speaking as part of a high-level panel at the upcoming National Forum on Integrated Care on December 5th. The Forum will provide a stage for national and international leaders to discuss the challenges and opportunities presented by recent policy developments, as well as providing expertise from local and international experience on how to achieve implementation success. Registration is free for patients and carers, the programme is here and you can register here.
The European Commission has commissioned a study to evaluate the regulation of orphan medicinal products. The survey is here.
This survey is specifically designed to collect responses at an organisational level. It is estimated that the survey will take ~45 minutes – if you need to leave the survey early, you can save your answers and complete the survey later. The deadline to complete the survey is 20th November 2018.
UCD PPI Ignite Winter School
Registration is now open for the first UCD PPI Ignite Winter School: “What Works to Engage Seldom Heard Voices in Health and Social Care Research”. The agenda can be found on the Eventbrite registration page here.
IPPOSI Patient Education Programme graduate Richard Dalton co-authored this report (Understanding Change In Complex Health Systems) with Dr Sarah Barry through the Centre for health Policy & Management in Trinity College Dublin. The report was commissioned by the HSE to academically support their new change management model and strategy. IPPOSI wishes to congratulate both Richard and Sarah on this substantial piece of work.