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EuroStemCell: Europe’s stem cell hub First periodic report 1 March 2010-30 August 2011

www.eurostemcell.org

information

education

conversation


Welcome to EuroStemCell

The European Consortium for Communicating Stem Cell Research (EuroStemCell) unites more than 90 European stem cell and regenerative medicine research laboratories, represented by: • Five major EU Framework 6 and 7 stem cell projects • Four internationally recognized European stem cell research centres • The European Clinical Research Infrastructures Network Our project brings these scientific experts into partnership with clinicians, ethicists, social scientists and science communicators. We also work closely with teachers and patient representatives. Our aims are to address the need for trusted, high quality information on stem cells tailored for citizens and stakeholders across Europe and beyond; to establish a model for widespread dissemination of EU Framework-funded research outputs to European publics; and to share best practice based on our experiences.

We’re here to help European citizens make sense of stem cells We provide reliable, independent information and road-tested educational resources on stem cells and their impact on society

We have established and are building on a coordinated platform for collation, dissemination and archiving of information on stem cells and regenerative medicine. Our structured approach to reaching European citizens and stakeholders at all educational levels focuses on three major dissemination routes: the web, provision of resources for direct public engagement, and provision of resources for educators. The project’s centrepiece is our multilingual website, www.eurostemcell.org. With the input of leading experts in the field, we are developing the site as the premier European reference point for stem cell information and discourse in Europe – it is truly becoming Europe’s stem cell hub. Image by Sally Lowell, MRC Centre for Regenerative Medicine, University of Edinburgh

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EuroStemCell: Europe’s stem cell hub


The need for stem cell information

Stem cell research is one of the most promising and exciting areas of biomedical science, with potential to revolutionise the way we understand and treat many debilitating diseases and injuries. Basic research is advancing rapidly, and stem cell therapies are moving steadily towards clinical application. But there are still many scientific questions to be answered, and few stem cell treatments have been thoroughly established as safe and effective. The future wellbeing of many thousands of people may be affected by knowledge acquired through stem cell research and its applications. Meanwhile, this research is constantly confronting society with new ethical and social dilemmas.

The future wellbeing of many thousands of people may be affected by knowledge acquired through stem cell research and its applications

Effective communication and engagement with the broadest possible community is essential to allow proper assessment of the research that is needed to develop therapies, and the potential stem-cell-based therapies themselves. The views of all stakeholders must inform decision-making around issues of public interest, including tissue and organ donation and clinical trial participation, and the development of appropriate regulatory frameworks for new therapies. Communication of stem cell research, however, presents significant challenges. The field is fast-moving, and it can be hard for the outsider to assess the credibility of new claims. Misinformation is a real issue, not least from unscrupulous operators offering ‘miracle cures’ that have little or no scientific foundation and have not been medically evaluated.

www.eurostemcell.org

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Building EuroStemCell: Europe’s stem cell hub EuroStemCell is uniquely placed to meet the need for reliable, independent and accessible information about stem cell research and regenerative medicine in Europe. Our combined expertise encompasses leading European science, social science, ethics and science communication. Our approach is divided into three themes: Information We have established a core infrastructure for collating, managing, structuring, disseminating and archiving stem cell information – from research developments and clinical progress to commercial, ethical and societal factors. We are collaborating with a wide and growing network of experts both within and beyond the EuroStemCell partners to capture the latest scientific and policy developments across the field. The result is extensive, accurate and up-to-date new fact sheets, commentaries, interviews and other material, published on eurostemcell.org. As well as making reliable information readily available to the public, this work provides a strong foundation of scientific information for our other activities, such as development of educational resources.

Our combined expertise encompasses leading European science, social science, ethics and science communication

Education We have collated, developed, tested, published and promoted a suite of stem cell and regenerative medicine resources for direct public engagement and for educators. The resulting toolkit and fully searchable resource directory constitute a ‘one-stop-shop’ for public engagement and education resources in this field, and to our knowledge represent the world’s leading collection of this type. We are now developing further educational and public engagement tools, building on our experience to date.

Conversation We provide space where dialogue about stem cell research and regenerative medicine can take place: between scientists, clinicians active in this research field and European publics. Our website includes blogs, interviews and commentaries for individual perspectives on aspects of stem cell research, as well as opportunities for site visitors to interact by submitting open comments. Using social media such as Facebook and Twitter, we provide supplementary spaces for conversation. Many of the educational resources we have developed and collated are also designed to foster dialogue. By translating website content, educational tools and outreach resources into multiple European languages and staging local events, we make sure conversations about stem cell research can include citizens across Europe, and can extend beyond geographical and language boundaries to become genuinely pan-European. We facilitate and deliver events that bring experts and members of the public face-to-face: discussion events for adults, workshops in schools, a debating competition, teacher training, a film roadshow. Increasingly, we also stimulate conversations reflecting on the practice of communicating stem cell research, extending the discussion to other science communicators, educators and scientists involved in outreach. We are linking to, and sharing best practice with other stem cell organisations as well as critically evaluating the impact of our dissemination activities and building the evaluation outcomes into our on-going work.

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By translating material into multiple European languages, we make sure conversations about stem cell research reach beyond geographical and language boundaries


18 months of EuroStemCell

The EuroStemCell website, www.eurostemcell.org, is the centrepiece of our project and its development has been a major focus for our first year and a half of work. We have restructured the site’s menus and refreshed our homepage to accommodate many new strands of content. Collated information and opinions from a wide range of contributors across the field come together on eurostemcell.org: Europe’s stem cell hub. And we’re reaching more European citizens every month – our website traffic continues to grow, whilst our Twitter and Facebook communities have taken off well and are expanding rapidly. Behind and beyond the web, we have been putting crucial information management systems in place and taking our educational tools out into schools and to public events. The following pages tell you more about what we’ve been doing in each of our three themes: information, education and conversation.

Our first 18 months in numbers 49 scientists, science communicators and other experts wrote, reviewed and translated content for the website We launched our educational Toolkit with our first 7 Tools We added 14 stem cell videos to our YouTube channel We posted 202 tweets, and gained 646 followers on our Twitter account @eurostemcell We responded to 79 direct enquiries from patients, their families and caregivers, and many more from event organizers, recruiters, media, students and job seekers

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Information: Our European information infrastructure In this first phase of the project, we have developed the crucial infrastructure for collating, structuring, checking and updating information on the latest scientific developments in stem cell research. This has resulted in outputs ranging from fact sheets to blogs. We have: • Created a wide variety of formats for presenting information to a range of audiences, including fact sheets, FAQs, interviews, commentary articles and blogs • Published 10 expert-reviewed, non-technical fact sheets on different aspects of stem cell research and regenerative medicine – from embryonic stem cell ethics to GMP manufacturing, cancer stem cells and reprogramming • Published 11 commentaries by leading experts, taking an in-depth look at current issues in the research field • Tackled hot topics, such as the case heard by the European Court of Justice in 2011 about patenting of embryonic-stem-cell-based technologies. We reported scientists' concerns about this case and its ethical, legal and biotechnology sector implications and opened a moderated comment stream to enable open discussion of this issue. We also helped brief journalists and collated the widespread media coverage of the case. More than 500 concerned individuals took the opportunity, made available through www.eurostemcell.org, to express support of the scientists' position. • Collaborated with the developmental biology community website, The Node, to deliver a monthly version of Erin Campbell’s image blog, bringing the beauty and detail of recently-published stem cell images to a general (non-scientist) audience • Developed a series, ‘what your taxes pay for’, that provides concise annual progress reports from other stem cell projects funded by the European Commission • Carried out the technical development work required to enable the website to become multilingual; a significant number of resources have already been translated into one or more languages, prioritised according to demand • Set up a working party to ensure on-going provision of evidence-based clinical trial information; a variety of content can be found on a single dedicated page on the website (www.eurostemcell.org/clinical-trials) • Provided an infrastructure for archiving the outputs of stem cell research projects funded by the EU’s Framework 6 and 7 programmes, and other stakeholders

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Image by Kate Cameron, MRC Centre for Regenerative Medicine, University of Edinburgh


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Education: Stem cell tools and resources Our first 18 months of activity has resulted in the development, testing and publication of a whole host of resources for public engagement and for educators. Resources for public engagement We have launched our stem cell toolkit and its first seven tools – a set of extensively tested, downloadable resources and activities. These tools cater for a variety of audiences:

Stem cell dream

Ready or not?

Stem cell stories

A dialogue event that brings an adult audience together with a range of expert stakeholders to discuss the real issues in stem cell research. Staged in Italy in October 2011 with an audience of over 400.

A role play on taking stem cells to the clinic. Suitable for adults or 15–19 year old students and tackling questions raised by cutting edge science.

A set of short films on stem cell biology, its science and ethics. These films, made in by the previous EU Framework 6 consortium EuroStemCell, are effective with a wide range of audiences aged 14+ years. We have made an additional short film on induced pluripotent stem cell (iPS) technology that will soon be added to the set.

Debating science issues

All about stem cells

Discover stem cells

A set of activity cards designed to support schools to explore key concepts in stem cell biology. Available in versions for 11–14 and 16+ year olds.

An interactive lesson introducing stem cells to 12–14 year olds.

A dynamic debating competition in which 15–19 year olds discuss and debate cultural, societal and ethical implications of advances in biomedical science.

Introducing stem cells A flexible presentation with supporting notes for use with a wide range of audiences, supported by a collection of easy-to-use classroom activities for 11–14s, 14–16s and 16+ year olds. 7 EuroStemCell: Europe’s stem cell hub


All the elements of our toolkit are downloadable from www.eurostemcell.org. All come with full instructions and optional extra components, and are customizable to suit a variety of educational settings. Four of our tools have been translated into one or more of the languages French, Italian, Spanish and Portuguese. Development of a new tool – a short film focused on the regulation of stem cells by gene networks – is underway. Importantly, all activities are driven by scientists who work closely with social scientists and specialist stem cell science communicators, ensuring accuracy of content and appropriate delivery for the target audience. Our new stem cell resource directory provides still further material by cataloguing public engagement and/or educational stem cell resources from other reliable sources. The directory already contained 54 resources at the end of our first 18 months, including several in Italian and German and one in 22 European languages. The directory is fully searchable and users can vote and comment on resources, as well as submitting additional items to the catalogue through a moderated form. We have also shared our expertise with other public engagement projects. We acted as advisors for a group of Swedish students developing a stem cell iPad app, and have licensed footage from our films to a Hungarian production company and to the Museum of Science & Industry in Tampa, Florida.

Resources for educators Working closely with teachers and school students, we have: • Performed an extensive analysis of secondary education science curricula in five European countries, plus the International Baccalaureate, to identify where the science and ethics of stem cells and regenerative medicine can be used to illustrate specific learning objectives. The outcome has been distilled into a School Curricula Report, presented as a one-page summary per country. • Developed and tested a series of curriculum-relevant educational resources for schools, and made them available in our online toolkit (detailed above). Feedback from teachers has been very positive and two of these tools, Ready or Not? A role play on taking stem cells to the clinic and All about stem cells, have been included by the Scottish Government agency Learning and Teaching Scotland in their recommended resource for teachers of post-16 school students studying biology. 1 A Spanish translation of Discover stem cells has been used as part of the schools programme at the science centre Casa de la Ciencia, Seville. 1

“I love creating really interesting lessons and your resources fit so well into that” Teacher, Edinburgh, UK

Learning and Teaching Scotland resource for Higher Biology: http://www.ltscotland.org.uk/nationalqualifications/resources/h/nqresource_tcm4670037.asp

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Conversation: Online and face-to-face We have built an active online community at eurostemcell.org and on the social media platforms Twitter and Facebook, and have established a regular e-newsletter which was already being sent to over 1,500 subscribers at the end of our first 18 months and has a growing subscriber list. Beyond the web, we have facilitated many face-to-face conversations using our educational tools: • Through Debating science issues, we have facilitated stem cell science & ethics workshops at 18 secondary schools in the West of Ireland and 14 stem cell debates throughout the Republic and Northern Ireland. • A group of international teachers attended EMBL’s Monterotondo campus for ‘Stem Cells at the Forefront’, 3 days of lectures, laboratory experience and hands-on practical activities. We presented EuroStemCell’s toolkit and resources, and teachers tried out Introducing stem cells, Stem cell stories and All about stem cells for themselves. • Four Italian universities combined film and lectures to introduce students to key concepts in stem cell science during an event organised by Unistem in March 2011. An unprecedented 2,200 school students and 100 teachers from 55 high schools attended. EuroStemCell's All about stem cells educational resource formed the basis of a workshop that was a key component of the activities in Milan. • Seven scientists and science communicators have taken our Discover stem cells tool to 11 classes of 12–14 year olds. More school visits are lined up for Autumn 2011 and the materials are reaching Spanish school students through activities at the Casa de la Ciencia science museum in Seville. • We have used the feature-length science documentary, ‘Stem Cell Revolutions: a Vision of the Future’, as the centrepiece of a stem cell roadshow which has toured 12 cities throughout the UK, reaching an aggregated audience of over 900 people. EuroStemCell was closely involved in production of the film and in promotion and hosting of the roadshow, and the documentary has screened in competition at the ScienceTeller festival in New Zealand. • We presented the EuroStemCell project and shared our educational tools with scientists and communicators at the International Society for Stem Cell Research 9th Annual Meeting’s Satellite Symposium, ‘An informed Society - How to participate in public science education and why it matters’, in June 2011.2 • We have agreed a strategy for delivering three events in science centres in the UK in 2012, in collaboration with the Association for Science and Discovery Centres. 2

http://www.isscr.org/meetings/informed-society.cfm

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mesenchymal stem cells

research heart stem cell patents Parkinson’s policy clinical trials and stem cell treatments

embryonic stem cells

iPS ethics stem cell tourism

interview global community


Making it count

EuroStemCell aims to deliver both a comprehensive information and resource hub, and evaluated and refined ‘best practice’ methodology for dissemination of new scientific outputs. Together, these will support the effective communication of stem cell research to relevant stakeholders and publics. Impact on science Stem cell research is a diverse and growing field, encompassing many different scientific disciplines. EuroStemCell provides a hub, a central focus for the sector in Europe. Scientists can visit the site to monitor relevant policy news and developments in areas of research beyond their own specialism. Our site facilitates rapid knowledge sharing between European research groups and out to a wider European audience, via web-based resources. EuroStemCell also raises the profile of stem cell research in Europe generally, which in turn raises awareness of career openings in Europe for talented young scientists. The project is building on developments initiated in the EU Framework 7 large-scale project EuroSyStem to federate the field in Europe, by providing public engagement resources tailored for stem cell scientists, by actively fostering communication between stem cell scientists within Europe and internationally, and by establishing an internationally visible presence for the European stem cell community. In the wider field of communicating Life Sciences, EuroStemCell is developing best practice for information management and science communication.

“EuroStemCell is a place where to look for stem cell news that you would not easily find elsewhere. There, you can learn the stories of the scientists and of their discoveries. But you can also read about their engagement with the public and their views on societal issues or their arguments and reactions when confronted with difficulties. You learn that ‘a scientific community’ exists. It is a place where you learn that science is much more than the results it produces.” Stem cell scientist Elena Cattaneo

Economic benefits The EuroStemCell network represents 82 leading stem cell laboratories and 11 small-to-medium enterprises (SMEs) across Europe, and reaches out to many more in the global stem cell community. The project enables partners to minimise duplication of effort, pool resources and maximise impact of public engagement activities and resources. It provides road-tested tools and resources to help ensure the success of public engagement efforts. And as Europe’s hub for stem cell research, it acts as a point of focus for those outside the sector (public, media, politicians, regulators etc) and can help to filter and efficiently respond to enquiries and requests for information at the personal and policy development level.

“this makes everything so much easier to understand” Comment on EuroStemCell’s YouTube channel

Impact on society Thanks to the close and enthusiastic involvement of European scientists who work at the highest level in this field, we can ensure scientific accuracy in all our outputs. The information and resources we produce are reliable and authoritative, countering misinformation, promoting informed decision-making and supporting increased public awareness and understanding of the scientific and associated ethical and societal issues in stem cell research and regenerative medicine. Beyond creation of our own new resources, we are pioneering a collaborative approach to public engagement: collating and coordinating public engagement materials and activities across a whole European scientific community.

EuroStemCell: Europe’s stem cell hub information, education, conversation www.eurostemcell.org

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Contact us Communications team: www.eurostemcell.org/contact Project Coordinator: Professor Clare Blackburn MRC Centre for Regenerative Medicine SCRM Building The University of Edinburgh Edinburgh bioQuarter 5 Little France Drive Edinburgh EH16 4UU UK +44 (0) 131 651 9563 c.blackburn@ed.ac.uk

Grant agreement number: HEALTH-F1-2010-241878

http://www.facebook.com/eurostemcell

@eurostemcell

EuroStemCell Activity Report: March 2010-August 2011  

Summary of the first 18 months' activities of EuroStemCell: Europe's stem cell hub