MESSAGE FROM THE CEO
Dear Friends,
Welcome to the May edition of the IPPOSI newsletter. We welcome articles and event notices from any interested members just contact us on:
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and we will be happy to include items of interest.
Regards,
Eibhlin
HEALTH TECHNOLOGY ASSESSMENT INFORMATION DAY
The IPPOSI Information Day entitled Health Technology Assessment for Pharmaceuticals and New Medical Technologies - Where are we now? took place on Tuesday, 5th April, 2011 in European Union House, Dublin. The event was a notable success with an excellent line up of speakers reflecting the knowledge and experience of patients, science and industry. As always at IPPOSI events, contributions and questions from the floor and panel made for an interesting discussion and debate. For their assistance in organising the event, IPPOSI would like to thank Fionnuala Gibbons in Molecular Medicine Ireland, Dr. Martin Flattery and Dr. Mairin Ryan in HIQA and Jenny Hughes in GSK.
The report of the meeting will be available shortly, and will be published on our website as well as circulated to all interested parties. If you would like to be sure to receive the report, please contact:
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PATIENT REGISTRIES
On May 10th, IPPOSI and the Medical Research Charities Group (MRCG) held a round table discussion entitled; "Towards a National Strategy for Patient Registers in Ireland". The aim 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 key decision makers in the HSE.
Approximately 50 people attended the session, all with an interest in and significant knowledge of health registers and data sets. Key discussion points were provided by invited guests, including Dr Harry Comber of the National Cancer Registry, Dr Cedric Gunaratnam, Beaumont Hospital, Dr Colin Doherty, St James's Hospital and Dr Barbara Foley, HIQA.
The report of the meeting and associated briefing paper and recommendations is being drafted and will be available from our website once published. If you would like to ensure you receive a copy of the report when it is ready, please contact:
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.
IAPO TOOLKIT FOR PATIENT ORGANISATIONS - WORKING WITH PARTNERS AND STAKEHOLDERS
The International Alliance of Patients' Organizations (IAPO), in association with Novo Nordisk, has launched a toolkit to support patients' organisations in developing effective relationships with key stakeholders. The toolkit, "Working with partners and stakeholders" provides guidance and best practice examples of how patients' organisations can develop effective, long-term partnerships with a range of stakeholders; tips and information to help with some of the challenges of working with external partners; and materials to assist organisations in developing their infrastructure and capabilities, as well as guidance on core skills and activities. Areas covered include raising disease awareness, advocacy, strategic planning, fundraising and effective communication.
The toolkit was developed by the healthcare consultancy Pope Woodhead, and is free from - IAPO patient toolkit
EUROPEAN PARTNERSHIP FOR ACTION AGAINST CANCER
The European Partnership for Action Against Cancer (EPAAC) was launched in 2009, after the European Commission published its Communication on Action Against Cancer: European Partnership. The specificity of the Partnership is that it brings together the efforts of different stakeholders into a joint response to prevent and control cancer. In its initial phase, until early 2014, the work of the Partnership will be taken forward through a Joint Action (co-financed by the EU Health Programme). The National Institute of Public Health in Slovenia has assumed the role of leader of the EPAAC Joint Action, which encompasses 38 associated partners from across Europe and over 90 collaborating partners.
For more information, see https://webgate.ec.europa.eu/sanco/heidi/index.php/Heidi/Cancer_partnership/1._Introduction
EU TASK FORCE TO ADVISE HOW TO PROMOTE EHEALTH TO HELP PATIENTS AND HEALTHCARE SYSTEMS IN EUROPE
An EU eHealth Task Force has been formed to assess the role of information and communications technologies (ICT) in health and social care and to suggest ways for ICT to speed up innovation in healthcare to the benefit of patients, carers and the healthcare sector. The high level group will be chaired by Estonia's President Toomas Hendrik Ilves and comprises health care professionals, representatives of patients and of the medical, pharmaceutical and ICT industries, legal experts and policy makers. ICT applications already help to empower patients and address challenges faced by EU healthcare systems like an ageing population, a rise in chronic diseases, a shortage in health professionals and budget constraints by, for example, enabling remote diagnosis and treatment and secure sharing of patient records. However, there is considerable potential to develop eHealth much further in the future, allowing healthcare workers to dedicate more time to be with patients; enhancing self-help and independence of patients and elderly; and also to develop new modeling-based diagnostic techniques. Promoting eHealth is a key objective of the Digital Agenda for Europe.
For more see:eHealthnews
EFGCP - FINAL PATIENTPARTNER REPORT PUBLISHED
The PatientPartner Project drew to a close in the summer of 2011. The project had set out to promote the role of patient organisations in the clinical trials context. PatientPartner was based on the belief that involving patient organisations as equal partners at all stages of clinical trials contributes to research that is better adjusted to the real needs of patients. PatientPartner was a three year project within the 7th Framework programme funded by the European Commission. The study looked closely at the part that patient organisations play and are willing to play in clinical trials and also focused its attention on clinical trials with children, the use of biobanks and ethical issues.
The final report of the PatientPartner taskforce, is available here: http://www.patientpartner-europe.eu/en/project-outcomes
Ref: EFGCP
EURORDIS E-LEARNING TOOL - CLINICAL TRIALS
Eurordis (European organisation for Rare Diseases) is developing E-learning tools that is hoped will enable patients to become more familiar and more informed about issues relating to medical research. The aim of the e-learning course is to provide a permanent tool available for all Patients Organisation Representatives. In particular, it can answer to urgent needs for training, for example in the case where a clinical study is being planned and POR are invited to contribute.
The first tool relates to clinical trials: http://elearning.eurordis.org/
NIH AND EUROPEAN COMMISSION COLLABORATION ON RARE DISEASES
The International Rare Disease Research Consortium being formed under the auspices of the two bodies has the ambitious goal of developing a diagnostic tool for every known rare disease by 2020, along with new therapies to treat 200 of them. The commission will launch a €100-million call for research proposals in July, which will support the consortium's scientific goals by focusing heavily on developing appropriate clinical trials.
For more information, please see the Commission's statement:http://ec.europa.eu/research/health/news-07_en.htmland thisarticle in "Nature"-http://www.nature.com/news/2011/110404/full/472017a.html
HTAI ANNUAL CONFERENCE - 27 JUNE RIO DE JANEIRO
In other HTA news, the 2011 Health Technology Assessment international (HTAi) conference, Health Technology Assessment for Health Systems Sustainability will be held in Rio de Janeiro 27-29 June. For the programme and registration details, please visit www.htai2011.org The 2010 conference was hosted in Dublin by the Health Information and Quality Authority (HIQA), and the conference presentations are available here.
SOCIAL MEDIA IN PHARMA SUMMIT: THE WEB'S LARGEST ONLINE SOCIAL MEDIA IN PHARMA CONFERENCE - 12 JULY - 04 AUGUST
With the increased popularity of tools such as Twitter, Facebook and other online communities, patients and their caregivers are able to interact with each other, as well as healthcare providers and pharmaceutical companies from across the global in real-time. They are doing so in unprecedented numbers. For many patients the first place they seek medical information is online.
Pharma IQ will present Social Media in Pharma Summit, the first ever social media online event for the pharmaceutical community. This interactive online event will bring together an international panel of thought leaders to discuss and debate the challenges and opportunities social media presents for the pharmaceutical industry - all of this in a convenient online format.
This 100% online event begins July 12 and runs through August 4, 2011.More details including early bird registration can be found here.
FRAMEWORK PROGRAMME 7 (FP7)
Reminder about Supports Available
The National Support network in Ireland aims to assist applicants applying for EU funding. The main mechanisms are through National Contact Points in different thematic areas. Three National Contact Points are providing support in the Health Theme and are available by phone/email or can meet you in person to assist you with proposal preparation.
Caitriona Creely, Health Research Board, phone 01 2345 204,
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Kay Duggan-Walls, Health Research Board, phone 01 2345 187
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Ciarán Duffy, Enterprise Ireland, phone 01 727 2760,
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Financial support is also available for applicants. This can cover proposal preparation for academic coordinators/companies (up to €12,500) or travel for academic researchers (up to €3,000 during FP7). For more information you can go to our website or contact the Legal and Financial NCP: Jill Leonard, Enterprise Ireland, phone 01 727 2751,
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Public Health - Call for Expression of Interest for Experts
The 2008 Call for expression of interest for experts in the area of public health expired in 2011. The new 2011 Call is now published. The call remains open for the duration of the EU Health Programme (until end 2013). Any person interested may submit an application during this period. The EAHC will draw up a list of applicants who meet the eligibility criteria.
If you wish to apply please click here.
Registration for FP7-Health Information Day & Brokerage Event Now Open
An information day on Call 6 (due to launch in July 2011) of the Health Theme will be held on Thursday 9th June 2011 at the Charlemagne Commission Building, Rue de la Loi, 170 1049, Brussels. The agenda will include discussions on this year's Work Programme. It will provide guidance on proposal preparation and management and will include sessions on opportunities for SMEs, focus on clinical trials and international cooperation.
Partnering activities will be organised on 10th June 2011 which will provide detailed information on partner-search facilities and time for bilateral meetings.
Further information, including a draft programme and registration guidance for both the Open Information Day and the Brokerage event is available here. Remember brokerage events are eligible for FP7 travel support. Contact your NCP for more information.
Indicative topics for FP7 2012 Health Call
The European Commission has published an orientation paper with an indicative list of topics that are expected to be funded under the FP7 2012 Health calls for proposals. The 6th Call in Health is due to launch in July 2011 and the draft work programme is now available. Please email your NCP (details above) for information on draft topics.
EMA - 2010 PHARMACOVIGILANCE LEGISLATION: STRENGTHENING THE MONITORING OF MEDICINES
New pharmacovigilance legislation (a directive and a regulation ) amending existing legislation was adopted in the European Union (EU) in December 2010. The legislation aims to save lives by strengthening the European-wide system for monitoring the safety of medicines.For more detailed information, please see 2010 pharmacovigilance legislation: strengthening the monitoring of medicines
On 15 April 2011 the EMA held the first stakeholder forum on the implementation of the new 2010 pharmacovigilance legislation. The meeting involved a broad cross-section of participants including industry, patient and healthcare professional representatives and national medicines regulatory authorities. This was the first in a series of stakeholder meetings taking place during 2011 and 2012 where the Agency aims to raise awareness of the requirements of the new legislation and promote the exchange of ideas, concerns and opinions. During the meeting, immediate feedback from stakeholders was received mainly in relation to the Agency's and Member States' technical contribution to draft European Commission implementing measures.
For more information, see the first stakeholder forum on the implementation of the new 2010 pharmacovigilance legislation.
Reference: European Medicines Agency
INNOVATIVE MEDICINE INITIATIVE - 4TH CALL FOR PROPOSALS
The Innovative Medicines Initiative JU (IMI) will launch its 4th Call for Proposals mid-June 2011. Details of the indicative topics for the 4th Call for proposals are now available.
Topic1: EU Medical Information System
- Building up a European Medical Information Framework to improve healthcare and facilitate research
- eTRIKS: European Translational Research Infrastructure & Knowledge Management Services Topic 2: Chemistry, Manufacturing and Control
- Delivery and targeting mechanisms for biological macromolecules
- In vivo predictive biopharmaceutics tools for oral drug delivery
- Sustainable Chemistry - delivering medicines for the 21st century Topic 3: Technology and Molecular Disease Understanding
- Human Induced Pluripotent Stem (hiPS) Cells for Drug Discovery and Safety Assessment
- Understanding and optimising binding kinetics in drug discovery
Background information on the indicative topics can be found here (updated version of 20 April).
The deadline for submitting Expressions of Interest will be mid-October 2011. The timeline is here
PUBLIC HEALTH TENDERS
The EU EAHC (Executive Agency for Health and Consumers) has recently published three new calls for tenders in the area of public health. The call concerns the following topics: HIV and coinfection prevention strategies, the organisation of training sessions for inspectors in the field of blood and blood components, the set-up of guidelines in support of ePrescription interoperability. See the EAHCwebsite.
For further information contact
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OPENING OF WORLD HEALTH ASSEMBLY: DIRECTOR-GENERAL URGES MINISTERS TO "REMEMBER THE PEOPLE"
The Sixty-fourth World Health Assembly, WHO's global annual meeting for ministers and senior health officials, opened yesterday. In her opening address, Dr Margaret Chan, WHO Director-General, highlighted unprecedented progress, such as under-five childhood deaths at their lowest in more than 60 years, and a 60 percent drop in maternal mortality in two regions. Dr Chan spoke of difficulties stemming from the global financial crisis and skyrocketing food and fuel prices. She commended UN agencies, countries and public and private partners for their hard work in saving lives from preventable and treatable diseases in the face of these challenges. Urging her colleagues to keep up their momentum, Dr Chan stated "any form of complacency at this point would be deadly." She also announced that WHO is embarking on the most extensive administrative, managerial, and financial reforms in its 63-year history.
Source:WHOEurope
OTHER UPCOMING EVENTS
Conference on the Common Strategic Framework for EU research and innovation funding
10 June 2011, Brussels, Belgium
Organiser: European Commission
Multi-Stakeholder Workshop on Consensus and Strategy Development
How to Achieve a Successful New Clinical Trial Legislation?
4 July 2011, Brussels, Belgium
Organiser: EFGCP
Reinforcing patient safety in Europe
14-15 June, Zagreb, Croatia
Organiser: EMAnk
And Finally - Tell Us What You Think
We welcome any feedback or ideas, please let us know. Contact Karen on
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