Category: Study trips

  • EFIC 2019 : networking for fighting pain

    By Cinzia Bolschiero,

    science journalist (UGIS, Italy)

     Ten EUSJA journalists attended  recently one of the biggest European congresses. And here is the first blog that has been sent by our members to EUSJA web page.

                 The Congress, EFIC 2019 held between 4 – 7 September in Valencia, Spain, is the largest scientific congress on pain in 2019, bringing together the most recognised experts in the field of pain medicine to exchange knowledge, ideas and the latest advances in the field. Several journalists attended it and ten were from EUSJA, its member associations in Croatina, Hungary, Italy, Finland, Romania, Spain,

    The highlights at the European Congress EFIC 2019 included presentations on the latest advances in neurostimulation; the relation between gender and migraines; how pain is experienced differently between different age-groups; how the evolution of digital health care will impact pain treatment; and whether there is an opioid crisis in Europe, but not only this.  New European research into objective measurement of pain could be a ‘game-changer’ for patients.Until now, a patient’s experience of pain has always been subjective, relying upon their personal feeling and their communication of the experience. However, a research project by the international consortium IMI-Pain Care is aiming to identify biomarkers for pain. Biomarkers, such as proteins or hormones, can enable objective measurement of a particular disease state. Biomarkers for pain would be a complete game-changer, potentially providing us with an objective measurement of pain for the first time, allowing us to compare the severity of conditions and the efficacy of treatments and services. The experts moreover explained also how the multi-modal pain treatment for cancer patients, as well as continuous assessment and understanding the risk factors for opioid misuse, will reduce the potential harm of opioids in cancer care.

    In EFIC 2019 there were over 3500 delegates from 37 States. The European Pain Federation’s biennialCongress in Valencia contributed to give evidence to the importance of networking. Many european projects and trials were presented. The European Pain Federation (EFIC) is a multidisciplinary professional organisation in the field of pain research and medicine. Established in 1993, EFIC constituent chapters represent Pain Societies from 37 European countries and close to 20,000 physicians, basic researchers, nurses, physiotherapists, psychologists and other health care professionals across Europe, who are involved in pain management and pain research. It has been said also how linking brain stimulation to artificial intelligence (AI) can open up a world of new possibilities in the treatment of pain and many other conditions. In the future, 10-20 years ahead, the AI software will act as a ‘small brain’ in itself, so it can first recognise abnormal patterns in the brain (ie identifying that a person is feeling a certain level of pain, or stress – or perhaps is suffering alcohol cravings because they are passing a bar – then the AI will automatically adjust the stimulation design atprecisely the right time and in the right circumstances to modulate the brain signals, alleviate the discomforts and also create deep learning in the brain.

    In EFIC 2019 doctors and researchers also gave some new data about migraines: it affects around 15% of the general population (around 1.2 bn people globally) and the disorder is three times more prevalent in women than in men.

    Photo: copy right Cinzia Bolsciero

     

  • Falling Walls and Berlin Science Week 2019

    EUSJA has got 5 slots for its members to visit Berlin from 6 to 10 November.

    Science journalists who are member of an EUSJA science journalists association are invited to attend events of the fourth Berlin Science Week (1 – 10 November) and the programme of the Falling Walls Conference (Falling Walls Lab, Venture, Engage, Welcome Reception on 8 November and Conference on 9 November), to connect with Berlin based and international scientific institutions and

    Science Week 2018: Innovate R&D, 09.11.2018, Copyright: Hans-Christian Plambeck/photothek.net

    to meet with colleagues from all over the world. The programme also includes a guided tour to selected scientific institutions in Berlin and participation in the Berlin Science Award ceremony on 7 November, hosted by the Governing Mayor of Berlin. More details will follow.

    The fellowship consists of four nights in a hotel which is already reserved (breakfast included). Free meals during the Falling Walls programme (except Dinner on 9 November) and during the tour on 7 November will be provided as well. Journalists have to take care of their own travel expenses. Please inform your members and send their applications (name, media, country, association, e-mail, mobile) by 20 August 2019 to violae@mail.ru.

    Please note that the approach of the Falling Walls Foundation is to accept first-comers only, we have to consider that condition during the selection process.

    More about Berlin Science Week www.berlinscienceweek.com

    More info on Falling Walls www.falling-walls.com

     

     

  • Health literacy and personalised medicine: New technologies, new questions, new skills

    Cristina Junyent, science writer, member of ACCC
    October 2018

     (Picture credits. © Floris Oudshoorn – ComicHouse / EHFG)

    Four tracks were debated this year in the European Health Forum Gastein (#EHFG2018): Innovation for All, Sustainable Systems, Evidence for Action and No one left behind. One of the transversal issues was health literacy, considered as a relevant part of health politics; and, because of its decisive role for patients’ benefit and acceptance, all stakeholders in health systems have to ensure that the communicative framing is in the centre of clinical implementation. But, in modern times, what does «health literacy» mean? To treat this point there was a special session «Health Literacy and Personalized Medicine» just at the beginning of the forum.

    The context

    On the one hand, health literacy is a key point in the democratization of health, because empowers individuals for decision making in the evolving context of medical sciences and technology. On the other hand, personalized medicine has always been the core of good healthcare: individual communication between physician and patient was and is the basis to find the best diagnosis and prognosis for each one. But now, «personalized medicine» as an emerging medical practice that uses an individual’s genetic profile opens new aspects for its possibility to help the physicians to select the proper therapy using the proper dose according to each patient’s needs. This could even extend to incorporating wellness supplements like Mushroom Coffee Supplement.

    So, in the new times «health literacy» goes further. It includes knowledge, motivations and competencies to access, understand, evaluate and apply the apprehended information to reach a proper judgement and make decisions concerning health care, disease prevention and health promotion in everyday life to maintain and promote quality of life during the life course with the support given by professionals and the Health System. In brief, health literacy now is not only about having knowledge but also about reaching the ability to find the proper information and use it in a right way. Are we on the right way?

    Awareness of personalized medicine

    The results of last the Quality Healthcare Communication Survey, that interviewed 895 physicians and 811 patients, were in some sense disturbing. Taken the average in EU countries –although with a significant regional variation– quite a high number of patients (85%) understood their personalized medicine treatment when it was explained to them, but only a quarter of physicians (23%) felt that their patients were fully informed. Quite a high level of patients (78%) understood what a biomarker means for treatment decision making, and would be willing to participate in personalised medicine treatment plan for ehlers danlos syndromes and other illnesses.

    Besides, when asking patients directly to their communication with doctors, the results were also worrying. To the question «which is the use of the information that doctor gives you to make decisions about your illness?» just a 23% of people though it was difficult. But to the question «how the information given from your doctor applies to you?» only the 18% understood that it did. And to «did you understood what the doctor said?» only the 15% said yes. In front of these results, basic questions are derived. Do physicians understand which patients’ concerns are? Do the physicians recognize what patients understood and if what they told made sense in the patients’ life or if patients can handle with it?

    How to develop a strategy

    Clearly then, health literacy should be a strong part of health politics. The complexity of the matter poses an important challenge for the translation process of disseminating information to create knowledge and stimulate action towards personalized medicine; all processes should be reoriented towards patient-centred culture of communication.

    Improving awareness, education and advocacy aimed several patients’ organizations, healthcare professionals and policymakers to work together. The European Cancer Patient coalition (ECPC), in close cooperation with Cancer Drug Development Forum (CDDF), European Alliance for Personalized Medicine (EAPM) and the International Quality Network for Pathology (IQNPath), will launch in November the first awareness month on personalized medicine, focusing  on molecular/biomarker testing.

    The models of good practice in health literacy include the development of organizational instruments for the different groups involved: healthcare professionals (communication can be taught and learnt), and patients and families (patient education programs and guidelines). Everybody involved in these issues should be engaged.

    There were defined four translational phases for applying genomic discoveries and every stage involves scientific communication with professionals as well as lay people. One of the phases leads to the other: health application, evidence based guidelines, health practice and, at the end, health practice at population level. Piloting and evaluating the first applications; and, after a greater experience, selecting the best practice projects and pilots to be spread. These actions should draw to better health outcomes.

    Basically, the point is improving people’s skills towards health system’s complexity; and health system’s skills versus people’s complexity. With the aim of leaving no one behind.

    [I took part in this meeting thanks to a EUJA scholarship managed by the ACCC].

  • HAMBURG AS YOU HAVE NEVER SEEN

    By Agnes Kittel

    Many of us have learnt that Hamburg is a Hanseatic City, we know that it is the second-largest city of Germany and Europe’s second-largest port, and lots of us may know why its airport was named after Helmut Schmidt, the German chancellor between 1974 – 1982, but who have heard about the Deutsches Elektronen-Synchrotron /DESY/ or The European X-Ray Free-Electron Laser /European XFEL/?

    Not too many tourists of Hamburg would answer, I guess, but many scientist worldwide, for sure. And some lucky science journalists, like me!

     

    On behalf of this Research Centre belonging to the Helmholtz Association, Dr. Thomas Zoufal, Press Officer at DESY and Rosemary Wilson from Press & Public Relations European XFEL GmbH,  sent the invitation for a 2days study trip to EUSJA, our Viola Egikova  immediately spread the news and I was very happy to get this possibility.

    However, to enjoy the lectures or to tell about our amazing experience there, is not the same. It was very good to listen to the talks delivered by excellent and enthusiastic scientists, but what to share with the readers, how to write it without false simplification but understandably for the majority of the readers? Without solid base in different areas of physics, it is too big challenge. So I turned for help to Dr. Thomas Zoufal to our host at the DESY and the organizer of our program.

    • Please, do you feel the importance of your position? You work for both your colleagues, the researchers AND for every people interested in discoveries.
    • As for our scientists, it is the passion for science that drives me, not any “importance” of any position. When I studied physics, I came to DESY for my diploma and later PhD thesis. The spirit here was amazing and when I got the opportunity to give tours of DESY and to explain visitors what we do here, I somehow got stuck. Nevertheless, I think it is important to explain to the public what we do, especially because we are funded publicly.
    • What was the reason to offer this exceptional possibility for the members of EUSJA just right now? 
    • Well, I wanted to do it much earlier (I first met Viola Egikova, EUSJA Board representative, in 2014), during the construction phase of European XFEL. To see an accelerator being constructed is even more impressive than seeing it hanging in a tunnel. However, the schedules at European XFEL were shifting on a week-to-week basis, so we were not able to fix a date for a visit with 100% certainty that we could offer you an interesting visit. So, the time of your visit was somehow by chance. In general, the “currency” for a research centre like DESY is trust and truthfulness. This is why for us at DESY, it is important to not only communicate our research and results to the public directly, but to have it somehow reviewed and assessed in terms of relevance and truth. This is the task for science journalists like you and your colleagues organized in EUSJA.
    • Are this type of visits regular in case of a new working installation?
    • We wanted to offer you a visit, which is interesting from the optical as well as from the intellectual point of view. The construction or the start of operation of the European XFEL was such an occasion. It was also an example how persistent strategic one has to be to invent such a new type of research instrument. The DESY Directorate decided in 1990 to start R&D work towards an X-ray laser, and we showed the proof of principle for the X-ray lasing process at our FLASH facility in 2000. So when the European XFEL started user operation in 2017, it was the climax of more than 25 years of empathic research and development. So you see, the occasion for the visit was outstanding. We won´t do that every two years … However, journalists are always very welcome to visit DESY.
    • What do you expect from us, your present EUSJA visitors?
    • Of course, we are happy to see articles or news stories about us and our research in magazines and newspapers around the world. But I didn´t have any concrete expectations. My focus was to bring our research to your awareness and to start a discourse about sense and relevance.
    • Our educational background that could help to understand – follow the presented topics at DESY and our jobs as science journalist were at different level. Is it a common among your visiting journalists? Is it frequent that they ask for your help?
    • Well, our research is very specialized and often quite far away from normal day´s life. Believe me, we are aware of that. So our approach is to help the journalists as far as we can to understand and to be able to evaluate what we are doing here. In the case of your visit, this was too demanding for us, because we had to serve you with one joint program without any chance of individualization.When single journalists visits us, we prepare an individual program meeting the demands and try to account for the journalist’ scientific background.
    • How did you organize the program and the order of the talks?  What were the main points?
    • In the original version of our program the order was: 1 day DESY and its research, 1 day European XFEL and its research. We wanted to provide a convenient mix of talks and visits during both days. Due to a shift in the European XFEL shutdown schedule and a big workshop at DESY, we had to shuffle everything. This was a mess for us and for you, too, I guess. Therefore, the order of the talks and visits were more or less randomly, but at least we managed to give the introductory talks before the visits. However, hearing a talk of DESY, then European XFEL and going back to DESY´s PETRA III again, before changing to European XFEL´s Schenefeld site, must have been confusing! However, the other option would have been to cancel the visit and start a new attempt in December, so we preferred to confuse you ….
    • Do you know the general opinion of your researchers regarding the necessity of the articles published in newspapers following such a visit?
    • Our researchers are very convinced and proud of what they are doing, so they are happy to read articles in newspapers or magazines. However, they are also realists and know that you science journalists don´t have the opportunity to write as many articles as you like (or at least you won´t sell them). For instance, one of our participating researchers told me: “We´re happy to see articles spreading the word about our research but this is not what we´re doing it for.” This is more or less the attitude of the most researchers here at DESY.
    • Our lecturers seemed to be so enthusiastic in their research – which is very good, but is it a common phenomenon here that  everybody is ready to explain details and takes the effort to find the best way to explain something not easily understandable for “outsiders”?
    • For good research, you can benefit from a “critical mass” of knowledge, ideas and research disciplines. This is the same for explaining complicated stuff. DESY is not unique in the world, but one of the few labs, where research is done with such huge machines, and our scientists know the way how to introduce their work. Every 2 years we do have an Open Day when about 20 000 people enter the campus. You can imagine that their educational backgrounds are highly different. More than 1000 volunteers, many of them young or senior scientists, explain on that DESY DAY what we do, and why. We have started a series called “science on tap”, too, when our scientists explain their recent project in a pub. During these events – and from each other –, we learn which explanations are useful and which are not.
    • I checked the home page of the DESY and European XFEL, and found it amazing, both their professionalism and the huge pile of information available. Who was involved in the work and its maintenance? 
    • I can only answer for DESY: Actually, our homepage is a huge construction site. It has come into years, but due to a lack of personal our relaunch is still not on the way. The content is produced by us at the PR department, for technical support we have a web office.
    • What is the participation of the researchers in it? Do they inform you about achievements or you have to ask them?
    • There is a broad range of participation. But more and more researchers inform us about their work because they see the nice articles and press releases in which this results. We are entering a phase where we get more information about research topics than we can process in news stories.
    • I also read a bit about the “policy” of the institute to help the families of its employees – and I think it is useful and can help to keep the quality of work, there.  It should be an excellent example for other institutes, too.
    • Although DESY is a quite big institution, we traditionally feel like a big family, helping each other at work and – if needed – also in private. The only recently (perhaps a few years ago) formulated “policy guideline” is only manifesting this attitude.
    • Just as before my departure from the DESY, I have to thank you again for these detailed answers, which may arise interest in some future visitors of Hamburg, especially, because the possibility for a short visit is possible for everybody above 16.

    What would be your take-home message about DESY as it is for you?

    • Well, I think, there are quite a few:

    For me, DESY is like a big think tank where experts from different fields of research and engineering disciplines (and different nationalities, cultures and ethnic background) do research together. All of them are idealists with the goal in their minds to improve the world of tomorrow. They acknowledge the capability and skills of each other and join forces to conceive and bring to reality some of the most sophisticated experiments to draw the secrets of the nanoworld of nature. The interplay of accelerator research, photon science and particle physics at DESY as well as the close international cooperation with other labs are key ingredients for this success.

    On the other hand, such a big lab like DESY (we´re almost 60 years old) has the ability to trace long-term projects over years or even decades. The most recent one was the development of free-electron lasers, a type of research instrument, which scientists have dreamed of for years. The development started in the early 1990ies, more than 25 years ago. Today, the European XFEL is a perfect complement to our other instruments like PETRA and FLASH, and we will definitely invent new research techniques improving even these cutting-edge instruments.

    So a huge idealism for basic research, the ability of joining forces in big projects and the spirit of invention and believe in “we can do better” are somehow in the DNA of DESY people.

    Thank you, Thomas, Rosemary, our Lecturers  – and Viola on behalf of the EUSJA for this great experience!

  • Meet Berlin Science Week

    By Viola Egikova

    EUSJA has confirmed for its members study trip to Berlin Science Week with the participation of the Falling Walls Conference. We are offering a fellowship for 10 journalists to visit Berlin from 6 to 10 November 2018. Science journalists are invited to attend events of the third Berlin Science Week and the programme of the Falling Walls Conference (Falling Walls Lab, Venture, Welcome Reception on 8 November and Conference on 9 November), to connect with Berlin based and international scientific institutions and to meet with colleagues from all over the world. The programme also includes a guided tour to selected scientific institutions in Berlin and participation in the Berlin Science Award ceremony on 7 November, hosted by the Governing Mayor of Berlin. More detailed programme will follow.

    The fellowship consists of four nights in a hotel which is already reserved (breakfast included), free participation to FWC, free meals during the Falling Walls programme will be provided as well. Journalists have to take care of their travel expenses.

    Applications are expected via national associations (name, association, media affiliation, e-mail, mobile, short CV) and should be sent to viola@eusja.org. Motivation letter is appreciated. The deadline is 25 August. The acceptance letters will be sent out after the deadline.

    Photos from the previous FWC

    © Falling Walls Foundation