MESSAGE FROM THE CEO
Welcome to the August 2011 IPPOSI newsletter. We will have a comprehensive review of our activities this year at the AGM which will take place on Monday, 19th September 2011, at 2.30pm, in UCD Conway Institute Board Room. All welcome. We have invited the students from the 6 PACE-R projects to come to the AGM and to showcase their work which was hosted by ISARC, Debra Ireland, Irish Hospice Foundation, Cystic Fibrosis Ireland, Irish Cancer Society and Migraine Ireland this Summer. Also at the AGM we expect to launch the report from the IPPOSI meeting earlier in the summer on Health Technology Assessments.
We are working hard to complete the report of our May meeting, "Towards a National Strategy for Patient Registries". The purpose of the meeting was to develop a briefing paper and list of concrete, achievable recommendations on the issue of Patient Registries in Ireland to present to the Minister for Health and relevant Department Officials. An outcome report has been drafted on behalf of IPPOSI and MRCG and we look forward to publishing the recommendations in due course.
This meeting and report arose from a concern that the role and potential of patient registries in Ireland could be considerably strengthened if a clear national strategy is developed by the Department of Health and Children and the Health Service Executive, we will be bringing its conclusions to the attention of the Minister and his officials at the earliest opportunity.
If you would like any further details about the meeting or report, please contact
Finally, some good news over the summer! IPPOSI is part of a consortium led by the European Patients Forum which applied under the third call of the Innovative Medicines Initiative to develop a Virtual Patients' Academy. After a year of meetings, teleconferences and discussions the project has been successful. IPPOSI is the only Irish organisation to be successful in this call.
We look forward to meeting you at the AGM next month.
Eibhlin Mulroe, MBA
European City of Science 2012
Dublin has been chosen to host Europe's largest science conference, ESOF 2012 (Euroscience Open Forum), from 11-15 July, 2012. To celebrate this prestigious, international event in Dublin, the City of Science 2012, a programme of science-related events and activities, will run throughout the year across the island of Ireland.
The Call for Proposals for the Careers Programme at ESOF2012 is available here. The closing date for the Call is Thursday, 15 September, 2011 at 12h00 GMT. For more details and to submit a proposal, please click here.
Innovation & Wellbeing - Europe's Health in 2020 and beyond
From 5th to 8th October 2011 the 14th European Health Forum Gastien (EFHG) will take place in Bad Hofgastein, Austria. This year's theme is Innovation & Wellbeing - Europe's Health in 2020 and beyond. The main topics for discussion will be:
- Active & healthy ageing
- Non-communicable diseases
- Future of medicine
- Social innovation and
More information can be found in the 2nd programme announcement or at http://www.ehfg.org/
MMI - Research Ethics Review System seminar
Molecular Medicine Ireland recently held a seminar on the issue of Research Ethics Review Systems. The discussion on the day focussed on two issues - e-application processes and how they can make the system easier both for committees and researchers; and standardising patient information and processes of consent for patients. The highlight of the day was a presentation from Orla Keane about her experience of participating in a clinical trial for a blood based product to control her alpha one antitrypsin deficiency. The report of the event is available at www.molecularmedicineireland.ie
HRB Awards Launched
Clinician Scientist Awards
The HRB Clinician Scientist awards are now open for applications (closing date 29th September, 2011). The scheme is open to senior health practitioners or current HRB clinician scientists who currently hold a substantive clinical post in the Irish Health Service. Full details including guidance notes and a webcast are available here
2012 Health Research Awards
Health Research Awards (HRA) 2012 were opened on 12 August 2011.
This scheme provides funding for clearly defined research projects in
- patient-oriented research
- health services research
- population health sciences research
The awards allow researchers and research teams to conduct internationally competitive and innovative research that will create new knowledge and evidence of benefit to health.
The closing date for applications is 5 October, 2011. More information here.
Innovative Medicines Initiative
The topics for the 4th call are now available. The 7 topics include:
- Building up a European Medical Information Framework to Improve healthcare and facilitate research
- eTRIKS: European Translational Research Infrastructure & Knowledge Management Services
- Delivery and Targeting Mechanisms for Biological Macromolecules
- In vivo predictive biopharmaceutical tools for oral drug delivery
- Sustainable Chemistry - Delivering Medicines for the 21st Century
- Human induced pluripotent stem (hiPS) cells for drug discovery and safety assessment
- Understanding and optimising binding kinetics in drug discovery
For more information and background on the the topics and how to participate contact Ciarán Duffy (
) 01-727 2760 or click here.
The complete Work Programme 2012 HEALTH, as well as all relevant information to apply can be found here
Challenge Social Innovation
Dates: 19/09/2011 - 21/09/2011
Challenge Social Innovation: Innovating innovation by research - 100 years after Schumpter. ICIC 2011 International Conference on indicators and concepts of Innovation and NET4SOCIETY Networking Event for Socio-economic Sciences and Humanities in FP7.
If you have any queries or would like to register for this event please use the online queries form. You can also contact the event administrators via
FP7 Health - 6th Call orientation paper
The latest draft work programme for the 6th Call in Health is now published as a new orientation paper, dated 9th June 2011 on the Cordis website. Please note the inclusion of a new call for specific SME topics which are broader and more bottom up and should be more attractive to SMEs. The conditions for this call are short projects (Max 3 years), 3-5 partners and up to €6m EU contribution. The call will have an accelerated timetable for submission, evaluation and negotiation. At least 50% of the EU contribution will have to go to SMEs. Please contact your NCP for information or assistance on draft topics. The call is due to launch on 20th July 2011.
Open Information Day on FP7 Health research - podcasts available
On 9 June 2011, the European Commission (Research and Innovation DG - Directorate Health) organised an Open Information Day on FP7 Health research at the Charlemagne Commission Building in Brussels.
This event presented the FP7 Health 2012 call orientations and highlighted the priorities and specificities of the next Health call for proposals published in July.
The webcasts from the day's sessions are available here
Source: HRB / FP7 National Contact Points
ISQSH 2010 National Hospital Inpatient Survey, Measuring the Patient's Experience
The Irish Society for Quality and Safety in Healthcare (ISQSH) recently published the results of the 2010 National Hospital Inpatient Survey, which records the views of more than 5,000 patients in Ireland. Full details of the report are available here
European Union Committee of Experts on Rare Diseases
A workshop entitled Towards a Public-Private Partnership for Registries in the Field of Rare Diseases will gather experts in London on 4 October 2011 to define how to establish a collaboration between academics, patients, and industry to jointly create, manage, and use data for the benefit of research while fulfilling obligations from regulatory agencies. To help prepare, the 2009 report of the Rare Diseases Task Force (RDTF) on Patient Registries, based on outcomes from a 2008 workshop, has been revised and is now available. The updated report contains a list of the rare disease patient registries in Europe.
Other events planned include a workshop scheduled for 8 September 2011 gathering experts to draft the EUCERD Recommendations on Quality Criteria for National Centres of Expertise for Rare Diseases. There will also be a workshop on the Classification of Genetic Diseases scheduled for 1 December 2011, which will focus on the World Health Organization's ICD revision process. Adaptation of the principles of nomenclature and modelling in health information systems will be applied to genetic diseases.
Finally, the EUCERD is organising a joint event with EuroBioMed to take place on 4 November 2011 in Montpellier, France. Held on the last day of the three-day Rare2011 conference, the agenda will focus on Sharing Data to Improve Health Care Management for Rare Diseases with three main areas addressed:
- Ensuring visibility of rare diseases in health information systems
- Partnering to optimise the use of patient data to improve clinical research and health care
- Improving access to expertise and quality health care.The next general meeting of the EUCERD is scheduled for 24-25 October.
Health Technology Assessments
A recently published report on Health Technology Assessment (HTA) processes highlights significant areas for improvement in order to accelerate patients' access to new technologies and innovative medicines, and to make the most of tight public budgets. The report compares HTA processes with best practice principles and shows that the link between assessments and access decisions could be improved.
The study was jointly commissioned by EFPIA, EuropaBio, Medicines Australia and PhRMA. More Details here.
Call for ESF Research Conference Proposals
The European Science Foundation invites researchers to submit proposals for high-level research conferences to take place in 2013 within the framework of its Research Conferences Scheme in the following scientific domains:
- Molecular Biology+
- Physics/Biophysics and Environmental Sciences
- Social Sciences and Humanities
The submission deadline for proposals is 15 September, more details, including a link to a live Q&A on September 2nd, are available here.
The European Union (EU) Council formally adopted new legislation aimed at protecting patients against the rising threat of falsified medicines. The new EU law is a major step forward in fighting falsified medicines in the EU.
European Patients' Forum "A real partnership, with older patients in a central role, is the way forward"
In July, the European Patients' Forum (EPF) and the Federation of Polish Patients (FPP) held a conference on "The Rights and Needs of Older Patients", which explored the opportunities and challenges around aging and older patients. The key message of the event was that older patients and citizens should play a central role in the design and implementation of solutions for active and healthy ageing, in order to respect their rights and meet their needs. The outcome statement from the meeting is available here.
Dates for the Diary
The 5th Annual General Meeting of IPPOSI will take place on Monday, 19th September 2011 @ 2.30pm, in the Health Science Campus, UCD.
EFGCP Annual Conference 2012 on Informed Consent - How Less could be More: Effecting a paradigm shift so we do inform participants - 24 & 25 January 2012 - Brussels, Belgium
EPPOSI 22 November 2011, 09.30-16.30
Building a workable European model for chronic conditions management: From concept to reality
Venue: Crowne Plaza Brussels Europa Hotel, Brussels
An Epposi one-day multi-stakeholder conference to:
- present Epposi's full research findings
- debate and validate the outline model
- set the scope for an implementation framework for a patient-centred approach to chronic conditions management
- report on Epposi's work on 'care and cure' with the pilot European Innovation Partnership in Healthy & Active Ageing
And Finally - Tell Us What You Think
We welcome any feedback or ideas, please let us know. Contact Karen on