February was full of inspiring events, like a field visit to Finland to see how e-health supporting care is implemented and the courageous patients that took part at the rare diseases event in Brussels. We participated the first meeting of the eTricks Ethics Board and in the discussions to form an EU Disease Prevention coalition.
Smartcare for older people and people with multiple chronic diseases
The User Advisory Board – patients, nurses, health insurers - of the Smartcare project, including Susanna Palkonen, this time as the representative of the European Patients’ Forum made a site-visit to South Carelia health and social care district in Finland to see how this Smartcare project partner is supporting elder patients with multiple chronic diseases and their carers to stay at home and feel safe and supported in doing so by means of ‘gadgets’ – new technologies. In the Smartcare project, 10 regions from 10 European countries integrate health and social care. [caption id="attachment_6703" align="alignright" width="300"]
A Finnish couple benefits from ehealth solutions to improve there care at home.[/caption] In Finland we visited an elder couple, who have a smart screen in their home, with easy and direct access to videoconferencing with a nurse in a ‘Smartcare service centre’. They can also use it for connecting with their selected loved ones, such as their daughter. In addition, twice a day a mobile nurse visits their home. They also had a smart freezer to which they selected nutricious semi raw meals for one week instead of daily home meal service, which is also available. Some elder people also may use a GPS watch with alarm button, in case of problems in getting lost while outside, and connected to support services. We also met a daughter of an elder woman, for whom the smart screen had changed their life, being able to connect among the family easier way, and crucially, with a picture. Modern technologies can support people to stay and feel good at home for a longer time, if deployed early enough, giving chance to get used to and master. At the same time it can save costs, while remembering that we cannot force our elders to stay at home when they really feel they cannot anymore and empowering fragile patients and their carers to express their views. While some challenges remain, the Smartcare project is well on its way and results will serve as best practice learning for all health and social services. This site-visit on the 17th of February was led by Paul de Raeve from the European Federation of Nurses (EFN) and also included the representative from AIM, European Health Insurers association. A report of the visit has been published by the EFN.
eTRIKS project seeks to make clinical trial data available in easy and safe way for several EU projects
As one of the patient representatives of the European Translational Information and Knowledge Management Services (eTRIKS) project’s Ethics and Safety Advisory Board (ESAB), EFA’s Susanna Palkonen participated in the last day of the project’s annual meeting in Barcelona on February 17. eTRIKS has developed a modern open source online platform to host data on the clinical trial participants (patients, healthy volunteers) for projects who run clinical trials. Financed by the EC-EFPIA Innovative Medicines Initiative, eTRIKS brings together 6 academia, 10 health care industry and is coordinated by Astra Zeneca. The ESAB is chaired by our old friend Charles Aufrey from the French National Institute of Research (CNRS). eTriks supports projects such as U-BIOPRED (respiratory disease), OncoTrack (cancer), ABIRISK (biopharmaceuticals and immunization), Predict TB (tuberculosis), RA Map (rheumatoid arthritis) to manage, organise, store, access and analyse clinical trial data, and in a way that is as secure as possible and that confidentiality and informed consent by people and patients who volunteer their health information in these projects are respected. EFA believes that it is exactly this kind of projects where EU collaboration and funding is as its best. Patients generally want to contribute to research and are willing to share their data, if confidentiality is respected. After all, we do not want wasteful research, subjecting clinical trial participants to unnecessary tests, but sharing to find treatments for needs of patients that are currently not covered and collaboration for cure. In this sense, the new EU regulation on clinical trials entered into force on the 16th of June 2014 and will apply at the earliest from the 28th of May 2016. EFA supported the European Patients’ Forum (EPF) advocacy activities for increased patients’ involvement, strengthened transparency and better provision of information throughout the legislative process, and we are happy to see that as part of this regulation, all clinical trials must be first registered in the EU database developed and managed by the European Medicines Agency, and the results published.
EU Disease Prevention Coalition On January 30, EFA Junior Policy Officer Jelena Malinina participated in a meeting on the possible future EU Disease Prevention Coalition, organized and initiated by Vaccines Europe. The Coalition has not been established yet but the intention would be to maximise EU advocacy efforts on disease prevention through like-minded partners to speak with a single and stronger voice. The planned Coalition would call for a comprehensive EU Charter for Disease prevention and help organise various policy events and roundtables, to participate and shape the EU debate. It is foreseen that key public health organisations working on prevention joins the Coalition.
Rare Disease Day 2015: “rare but real” On February 24, the European Organisation for Rare Diseases (EURORDIS) commemorated the Rare Disease Day 2015 in an event attended by EFA Junior Policy Officer Jelena Malinina. 
Over 6,000 different rare diseases have been identified to date, diseases that directly affect the lives of more than 30 million people in Europe. The Rare Disease Day 2015 theme “Living with a Rare Disease” recognises the millions of families, friends and carers whose daily lives are impacted by rare diseases. Often the complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are the primary source of support for the patients. During the event, EU Commissioner for Health and Food Safety Vytenis Andriukaitis highlighted that the European Commission (EC) has invested €620 million to the rare diseases research but argued that more action is needed. He announced that in 2015, the EC will launch a joint action on rare diseases.