www.eurostemcell.org

EuroStemCell:Europe’s stem cell hub

First periodic report1 March 2010-30 August 2011

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, socialscientists and science communicators. We also work closely with teachers and patientrepresentatives.

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 modelfor widespread dissemination of EU Framework-funded research outputs to Europeanpublics; and to share best practice based on our experiences.

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 ofresources for direct public engagement, and provision of resources for educators.

The project’s centrepiece is our multilingual website, www.eurostemcell.org. With theinput of leading experts in the field, we are developing the site as the premier Europeanreference point for stem cell information and discourse in Europe – it is truly becomingEurope’s stem cell hub.

We’re here to helpEuropean citizens makesense of stem cells

We provide reliable, independent informationand road-tested educational resources on stem cells and theirimpact on society

1 EuroStemCell: Europe’s stem cell hub

Image by Sally Lowell, MRC Centre for Regenerative Medicine, University of Edinburgh

The need for stem cell information

Stem cell research is one of the most promising and exciting areas ofbiomedical 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 towardsclinical application. But there are still many scientific questions to be answered, and fewstem cell treatments have been thoroughly established as safe and effective. The futurewellbeing of many thousands of people may be affected by knowledge acquired throughstem cell research and its applications. Meanwhile, this research is constantly confronting society with new ethical and social dilemmas.

Effective communication and engagement with the broadest possible community isessential to allow proper assessment of the research that is needed to develop therapies, and the potential stem-cell-based therapies themselves. The views of allstakeholders 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 cellresearch, 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 realissue, not least from unscrupulous operators offering ‘miracle cures’ that have little or noscientific foundation and have not been medically evaluated.

The future wellbeing of many thousands of people may be affectedby knowledge acquiredthrough stem cellresearch and its applications

EuroStemCell: Europe’s stem cell hub 2www.eurostemcell.org

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 andregenerative medicine in Europe. Our combined expertise encompassesleading European science, social science, ethics and science communication. Our approach is divided into three themes:

InformationWe have established a core infrastructure for collating, managing, structuring, disseminating and archiving stem cell information – from research developments andclinical progress to commercial, ethical and societal factors. We are collaborating with awide and growing network of experts both within and beyond the EuroStemCell partnersto capture the latest scientific and policy developments across the field. The result isextensive, accurate and up-to-date new fact sheets, commentaries, interviews and othermaterial, published on eurostemcell.org. As well as making reliable information readilyavailable to the public, this work provides a strong foundation of scientific information forour other activities, such as development of educational resources.

EducationWe have collated, developed, tested, published and promoted a suite of stem cell andregenerative medicine resources for direct public engagement and for educators. Theresulting toolkit and fully searchable resource directory constitute a ‘one-stop-shop’ forpublic 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.

ConversationWe provide space where dialogue about stem cell research and regenerative medicinecan take place: between scientists, clinicians active in this research field and Europeanpublics. Our website includes blogs, interviews and commentaries for individual perspectives on aspects of stem cell research, as well as opportunities for site visitors tointeract by submitting open comments. Using social media such as Facebook andTwitter, we provide supplementary spaces for conversation. Many of the educationalresources we have developed and collated are also designed to foster dialogue.

By translating website content, educational tools and outreach resources into multipleEuropean languages and staging local events, we make sure conversations about stemcell research can include citizens across Europe, and can extend beyond geographicaland language boundaries to become genuinely pan-European. We facilitate and deliverevents that bring experts and members of the public face-to-face: discussion events foradults, workshops in schools, a debating competition, teacher training, a film roadshow.

Increasingly, we also stimulate conversations reflecting on the practice of communicatingstem cell research, extending the discussion to other science communicators, educatorsand scientists involved in outreach. We are linking to, and sharing best practice withother stem cell organisations as well as critically evaluating the impact of our dissemination activities and building the evaluation outcomes into our on-going work.

Our combined expertise encompassesleading European science, social science,ethics and science communication

By translating materialinto multiple Europeanlanguages, we makesure conversationsabout stem cellresearch reach beyondgeographical and language boundaries

3 EuroStemCell: Europe’s stem cell hub

18 months of EuroStemCell

The EuroStemCell website, www.eurostemcell.org, is the centrepiece ofour project and its development has been a major focus for our first yearand a half of work.

We have restructured the site’s menus and refreshed our homepage to accommodate manynew strands of content. Collated information and opinions from a wide range of contributorsacross the field come together on eurostemcell.org: Europe’s stem cell hub. And we’rereaching more European citizens every month – our website traffic continues to grow, whilstour 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 threethemes: information, education and conversation.

Our first 18months in numbers

49 scientists, science communicators andother experts wrote,reviewed and translatedcontent for the website

We launched our educational Toolkit withour first 7 Tools

We added 14 stem cellvideos to our YouTubechannel

We posted 202tweets, and gained646 followers on ourTwitter account@eurostemcell

We responded to 79direct enquiries frompatients, their familiesand caregivers, andmany more from eventorganizers, recruiters,media, students and job seekers

www.eurostemcell.org EuroStemCell: Europe’s stem cell hub 4

Information:

Our European information infrastructure

In this first phase of the project, we have developed the crucial infrastructure for collating, structuring, checking and updating informationon the latest scientific developments in stem cell research. This hasresulted 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 delivera 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 ormore 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

5 EuroStemCell: Europe’s stem cell hub

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

EuroStemCell: Europe’s stem cell hub 6www.eurostemcell.org

Our first 18 months of activity has resulted in the development, testingand publication of a whole host of resources for public engagement andfor educators.

Resources for public engagementWe have launched our stem cell toolkit and its first seven tools – a set of extensivelytested, downloadable resources and activities. These tools cater for a variety of audiences:

Education:

Stem cell tools and resources

Stem cell dreamA dialogue event that brings anadult audience together with arange of expert stakeholders to discuss the real issues in stem cellresearch. Staged in Italy in October2011 with an audience of over 400.

Ready or not?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.

Stem cell storiesA set of short films on stem cell biology, its science and ethics. Thesefilms, made in by the previous EUFramework 6 consortiumEuroStemCell, are effective with awide range of audiences aged 14+years. We have made an additionalshort film on induced pluripotent stemcell (iPS) technology that will soon beadded to the set.

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

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

Discover stem cellsAn interactive lesson introducingstem cells to 12–14 year olds.

Introducing stem cellsA 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 comewith 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 ofthe languages French, Italian, Spanish and Portuguese. Development of a new tool – ashort 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 scientistsand specialist stem cell science communicators, ensuring accuracy of content andappropriate delivery for the target audience.

Our new stem cell resource directory provides still further material by cataloguing publicengagement and/or educational stem cell resources from other reliable sources. Thedirectory already contained 54 resources at the end of our first 18 months, includingseveral in Italian and German and one in 22 European languages. The directory is fullysearchable 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 asadvisors for a group of Swedish students developing a stem cell iPad app, and havelicensed footage from our films to a Hungarian production company and to the Museumof Science & Industry in Tampa, Florida.

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

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

Teacher, Edinburgh, UK

EuroStemCell: Europe’s stem cell hub 8www.eurostemcell.org

Conversation:

Online and face-to-face

9 EuroStemCell: Europe’s stem cell hub

We have built an active online community at eurostemcell.org and on thesocial media platforms Twitter and Facebook, and have established aregular 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-faceconversations 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 toolto 11 classes of 12–14 year olds. More school visits are lined up for Autumn 2011 andthe materials are reaching Spanish school students through activities at the Casa de laCiencia 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

mesenchymal stem cells

research heartstem cell patentsParkinson’s policyclinical trials andstem cell treatmentsembryonicstem cellsiPS ethicsstem cell tourism

global communityinterview

“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 confrontedwith difficulties. You learn that ‘a scientific community’ exists. It is a place where you learn thatscience is much more thanthe results it produces.”Stem cell scientist Elena Cattaneo

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

EuroStemCell: Europe’s stem cell hub 10www.eurostemcell.org

EuroStemCell aims to deliver both a comprehensive information andresource hub, and evaluated and refined ‘best practice’ methodology fordissemination of new scientific outputs. Together, these will support theeffective communication of stem cell research to relevant stakeholdersand publics.

Impact on scienceStem cell research is a diverse and growing field, encompassing many different scientificdisciplines. 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 ofresearch beyond their own specialism. Our site facilitates rapid knowledge sharingbetween European research groups and out to a wider European audience, via web-based resources. EuroStemCell also raises the profile of stem cell research inEurope 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 engagementresources tailored for stem cell scientists, by actively fostering communication betweenstem 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.

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

Impact on societyThanks 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 publicawareness and understanding of the scientific and associated ethical and societal issuesin stem cell research and regenerative medicine. Beyond creation of our own newresources, we are pioneering a collaborative approach to public engagement: collatingand coordinating public engagement materials and activities across a whole Europeanscientific community.

EuroStemCell: Europe’s stem cell hubinformation, education, conversation

Making it count

Grant agreement number: HEALTH-F1-2010-241878

Contact us

Communications team:www.eurostemcell.org/contact

Project Coordinator: Professor Clare BlackburnMRC Centre for Regenerative MedicineSCRM BuildingThe University of EdinburghEdinburgh bioQuarter5 Little France DriveEdinburgh EH16 4UUUK

+44 (0) 131 651 9563 c.blackburn@ed.ac.uk

http://www.facebook.com/eurostemcell

@eurostemcell