HEAL AGM – Getting Better Health Through a Healthier Environment On September 25 and 26, HEAL (Health and Environment Alliance), an umbrella organisation representing NGOs working in the field of health and environment, has organised its annual general assembly and celebrated its 10th anniversary with an event at the European Parliament. The event, “New horizons for better health and environment-friendly lives”, was co-hosted by four leading MEPs champions in the field of health and environment, MEPs Peter Liese, Jo Leinen, Corinne Lepage and Satu Hassi. Key note speeches were given by Zsuzsanna Jakab, Regional Director for Europe of the World Health Organisation, and Philippe Grandjean, Professor of the Harvard School of Public Health. The following day, Environment Commissioner Janesz Potocnik that had just received the prestigious United Nations’ 2013 Champions of the Earth award came to HEAL office to underline the last priorities of his mandate. EFA was represented by EU Policy Officer Roberta Savli that is also an Executive Committee member of HEAL and presented patients’ views on air quality to the Environment Commissioner. More information here. EPHECT – enabling patients to make informed choices On the 18th of September, an event to present the results of the collaborative action EPHECT (Emissions, exposure patterns and health effects of consumer products in the EU) was held in the European Parliament and hosted by the Members of the European Parliament Mrs. Catherine Stihler and Mr. Claude Moraes. The collaborative action was funded under the second public health programme of the European Union and is finishing by the end of September. The partners put together a database of the most used consumer products in the EU (focusing especially on cleaning agents, air fresheners and personal care products) and studied the main compounds they emit and the safe short- and long-term of exposure of people to these compounds to protect citizens from respiratory diseases. EFA was represented by EU Policy Officer Roberta Savli. EFA has always advocated for better indoor air quality in the EU and welcomes the results of the projects. We would like people, and especially vulnerable people, such as patients with allergy and respiratory diseases, to be able to make informed choices when buying consumer products. A labelling system should be put in place with the involvement of patients and consumers’ organisations. More information about the project here. EFPIA event on transparency of clinical data EFA’s Susanna Palkonen in her role as EPF vice president spoke about the patient perspective on the public access and transparency of clinical trials. Palkonen presented at the meeting organized by the European Federation of Pharmaceutical Industries and Associations at the end of August. For patients and carers, the most important thing is usually access to results of clinical trials, meaning presentation of the main conclusions emerging from the trial in simple and understandable language, rather than trial data as such. However, sharing actual data from clinical trials is also crucial to enable researchers to revisit the studies and reanalyse data. EPF supports the publication of all results of all clinical trials in a timely manner, regardless of the outcomes as proposed by the European Medicines Agency. In this, patient confidentiality and informed consent by patients participating in trials is very important and in fact the study results/data actually belongs to the study participants. Transparency will also prevent repetition of similar trials, which is unethical. Wider sharing can lead to benefits for patients and public health, when science could progress more quickly towards better and improved therapies and limited resources could be used more rationally and research not duplicated. EFA agrees. The summary of the meeting and videos of the panels from EFPIA are available here. Useful link: www.alltrials.net EFA at the EMA workshop on Best expertise vs conflict of interests EFA took part in a very timely and first of its kind workshop by the European Medicines Agency on their newish conflict of interest policy. The new policy is sometimes putting patients and patient representatives who are to be involved in medicinal product related discussions at the Agency in a difficult situation. Regardless whether they are involved in fundraising for the patient group they come from, volunteer or staff, how the organisation they come from manages conflict of interest and implements good practice or indeed what the group’s track record is. Another issue is the definition of high conflict of interest when one is considered to give ‘strategic advice to a company’. The event featured several different points view, from patients, academia, doctors, CEO Corporate Responsibility Europe, the regulators and the industry. Patient groups are ready to work with the agency to strike the right balance and understand that clear and concise policy is crucial. Presentations and documents are available here. EFA at the PCWP & HCPWP meeting in London At the meeting of working parties for healthcare professionals (HCPWP) and patients and consumers (PCWP) of the European Medicine Agency (EMA) new co-chairs were elected. EFA took part in the meeting and was represented by Board Member Lina Buzermaniene. Davis Haerry of the European AIDS Treatment Group (EATG) is the new co-chair of the PCWP and Gonzalo Calvo, chair of the European Association for Clinical Pharmacology and Therapeutics (EACPT), became the new co-chair of the HCPWP. Both David Haerry and Gonzalo Calvo will co-chair these working parties for the next three years, together with Isabelle Moulon, Head of Patients and Healthcare Professionals at the EMA. They will provide recommendations to the EMA on patients' and healthcare professionals' interest, and monitor interaction between all relevant parties. More information here. Lina Buzermaniene Featured at ELF Symposium at ERS Congress 2013 At the European Respiratory Society Congress 2013 in Barcelona on Tuesday the 10th of September, EFA Board Member Lina Buzermaniene, from the Lithuanian Council of Asthma Clubs, was a guest speaker for the European Lung Foundation’s symposium. The event, entitled “Effective engagement of patients and the public in silence, healthcare and the media” served to inform scientists and healthcare professionals of the advantages patient involvement can bring to their work through real-life examples. The session explained how to effectively take advantage of patient involvement possibilities at different levels and areas of healthcare as well as science. The ELF’s Monica Fletcher opened with a presentation of patient involvement in respiratory healthcare in Europe. Ms. Buzermaniene’s presentation “More than just a study subject?” advocated for public availability of all clinical trials results, especially in lay terms, so both patients and healthcare professionals have access to all relevant information. She argued that since patients provide data for research they dually have the right to be informed of how the data is being used and the results the data helped to unveil. The example of the European project U-BIOPRED was presented as a model for patient involvement. Ms. Buzermaniene also presented the idea that there are many different ways to view patients in clinical trials – as subjects, participants, volunteers – because each has a unique connotation. She concluded by stressing the importance of empowering patients and how their empowerment leads to better healthcare outcomes, reduced costs, better quality of life and less time for disease management. Next, a researcher from Canada, Mr. Antoine Boivin, presented the audience with a real-life study of patient and public involvement in guidelines and its impact on quality improvement. He proposed patient involvement requires a common starting point for patients and healthcare professionals which is to decide what should be learned from each other. His study revealed patient participation created an increasing agreement on priorities (such as access to treatment and emphasis on self-help). The last speaker was Ms. Viviane Parry from the BBC, who offered five key tips for scientists and patients when interacting with the media: (1) react quickly to deadlines, (2) mind the language used, (3) say what you want to say, (4) do yourself proud and (5) have case studies ready. She emphasized working fast, sending clear messages and demonstrating the value of the messages in a way which is understandable to the press. COPD Audit Meeting in Barcelona On behalf of EFA, Isabel Saraiva from RESPIRA attended the COPD Audit Meeting during the ERS Congress in Barcelona. The meeting followed up to an event taking place earlier this year in London and created a level playing field for improving the COPD care in Europe. Right now there is a need to collect information, confirm patterns and then start action. Speakers presented the evidence from the audit of more than 400 hospitals in 13 countries and pointed out differences in COPD hospital care not only between countries but also between hospitals in one country. The role of European organisations such ERS and EFA was also discussed. As a conclusion, participants of the meeting pointed out the need to communicate information on COPD in a lay language and deepen the collaboration between patients' representatives, scientists and healthcare authorities. More information here. Other events Susanna Palkonen as EPF board member attended a joint working dinner on the 16 September by the EPF board and the board of the Standing Committee of the European Doctors CPME. The following day she joined the EPF board meeting followed by funding partners annual meeting.