EFA was invited to allergologists’ brainstorming and guidelines committee meetings Our partner, European Academy of Allergology and Clinical Immunology is getting up to speed on involving patient representatives in their planning and activities. EFA President Breda Flood and Susanna Palkonen attended an intensive brain-storming and team building meeting of the EAACI Executive Committee in Malta 27th of September. The following day Susanna presented at EAACI’s new Guidelines Taskforce on tools, evidence and best practice on involving patients in treatment guidelines. Meaningful involvement means involvement throughout the whole cycle of planning, drafting, implementing and evaluating guidelines. Patient groups are keen partners of scientific societies and the collaboration makes sense to all in our common goal of the right care for the right patient. EAACI wants to innovate and produce useful guidelines that meet, and build on the needs of patients and clinicians daily life/practice. EFA thanks sincerely EAACI for their openness and welcoming spirit! To see the EFA presentation, click here. European Patients’ Forum (EPF) – campaign launch On the first day of October, EFA EU Policy Officer Roberta Savli and new EU Policy and Programme Intern Jan Meissner attended an event in the headquarters of the EPF in Brussels to mark the launch of the campaign for the 2014 European Parliament Elections “Patients + Participation = Our Vote for Healthier Europe”. The aim of the campaign is to demonstrate that patients’ empowerment and involvement are part of the solutions needed to make the health systems more effective. The campaign calls on decision-makers to commit to a patients’ perspective in their work to drive better and work towards fairer society in Europe. The speakers at the event included President of the European Patients’ Forum Anders Olauson, the European Commissioner for Health Tonio Borg and by Members of European Parliament Dagmar Roth-Behrendt and Susy De Martini. To see more practical information on the campaign, click here and to download the manifesto in all EU languages, please click here. Can telehealth service ‘renew health’ for COPD patients? Interesting pilot project in Denmark providing video consultation for COPD patients discharged from hospital was presented 8th of October in connection of the EU open days in Brussels. The project is part of the Renewing Health project, the biggest randomised controlled trial (RCT) on telemedicine, supported by the EU ICT Policy Support Programme. Trials are going on in specific services for COPD, heart disease and diabetes in Denmark, Italy, Sweden, Norway, Spain, Finland, Greece, Austria and Germany. EFA’s Susanna Palkonen belongs to User Advisory Board of Renewing Health and we have the opportunity to follow and comment on the project through its duration. The Danish project piloted in two hospitals and included COPD patients with severe or very severe co-morbidities who had been hospitalised for acute exacerbation. When back home, they had a follow up through daily video consultations for 7 days followed by a telephone call. While probability of being re-admitted was reduced, there was a prolonged time between re-admission and total re-admission days were reduced, the difference is not scientifically relevant compared to the control group, who did not have this service and there was no change in mortality. As part of the qualitative study accompanying the trial, patients felt safe and empowered and that digital proximity is possible – they were happy with the support of the nurse through video. The presentation on the COPD trial, video on interview with COPD patients, and other Renewing Health presentations are available here. EFA looks forward to the final results of the Renewing Health and will disseminate these to our members. Patients and research at the Portuguese allergy conference Patient organisations’ role in allergy research in Europe was in focus at the 34th annual meeting of the Portuguese Society for Allergology and Clinical Immunology SPAIC on the 12th of October in Algarve. Thanks to EFA member APA in Portugal, EFA’s Susanna Palkonen was invited to share our experience and best practices through participation in EU research projects such as MeDALL and U-BIOPRED, and when patients are on the driving seat creating their own evidence: new project EFA partners in, EARIP and EFA respiratory Allergy project. She also shared EPF Value+ tools to involve patients and the benefits for research of involving patients and their organisations. Patient involvement makes sense as patients have their experience on real life challenges in health care and daily life with chronic disease, and research has to meet the needs arising from this experience. APA has been involved successfully in several projects in Portugal. EFA thanks sincerely the SPAIC and APA for this important opportunity. To see the EFA presentation, click here. Emissions and odours from materials – conference on indoor air quality EFA was invited to contribute to the 11th edition of the conference “Emissions and odours from materials”. This event, held in Brussels on the 17th and 18th of October, was organised by Certech. EU Policy Officer Roberta Savli gave a talk on “Poor indoor air quality: a public health problem”. Her presentation gave an overview of the health effects of poor indoor air quality, especially on people with allergy, asthma and chronic obstructive pulmonary disease. The presentation included proposals for certain actions at the level of the European Union and its Member States that could improve the current situation. Participants of the conference also learned from the presentation about the patients’ perspective on indoor air quality and results of recent studies on this topic. To see presentation by Roberta Savli, click here. To find out more on the event, click here. EFA President attending two important events in Ireland EFA President Breda Flood attended annual Alpha-1 conference which took place in Marino Institute of Education in Dublin on the 11th October. This conference was organized by Alpha One Foundation. This foundation was established in 2001 and its aim is to increase diagnosis, raise awareness and improve the treatment of Alpha-1 Antitrypsin Deficiency (Alpha-1). This disease is very common, yet largely under-diagnosed. It affects over 250,000 carriers on the island of Ireland, with 3,000 of these having severe deficiency. If undetected, Alpha-1 leads to severe lung and liver disease. Most patients present in their 40s and 50s with early-onset emphysema or chronic obstructive pulmonary disease (COPD) but this presentation can occur later in life. This year’s conference was the biggest and most successful to date with over 50 Alphas and their families attending. To read more about the event, please click here Breda Flood was also invited to attend the launch of COPD Support Ireland, which is the first national support and advocacy body for chronic obstructive pulmonary disease in Ireland. The event took place on the 21st October in the National Gallery of Ireland, Dublin. COPD Support Ireland is a charity set up to help and support all those living with COPD, bringing together local support groups from around the country to create a national voice for all those living with, or caring for someone with, COPD. The President of COPD Support Ireland Michael McGloin spoke at both of these events and Breda Flood presented him EFA’s booklet ”Enabling Air Travel with Oxygen in Europe”. Click here to see the photo. Atopica – air quality and pollen monitoring EFA EU Policy Officer Roberta Savli was invited to give a talk in the stakeholders’ meeting organised by Atopica in Paris on the 22nd of October. Atopica is a multidisciplinary project financed by the European Commission FP 7 with the objective of linking together air quality and climate change on pollen and public health outcomes. The perspective of national authorities, centers for monitoring pollen and air quality concentrations and patients were presented. EFA presented its 4-year Allergy Awareness Project and our aim to secure real-time pollen monitoring information. For more information:
