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European Consortium for Communicating Stem Cell Research

Periodic Reporting for period 2 - EuroStemCell (European Consortium for Communicating Stem Cell Research)

Reporting period: 2016-07-01 to 2018-03-31

While stem cell research offers high hope for untreatable and life-threatening disease, the use of these cells raises ethical and practical concerns that vary across Europe. Furthermore, as the field is moving steadily towards its anticipated translational goals, unscrupulous operators are already offering patients bogus treatments, often at high financial cost. As a result, this research is the subject of great debate among scientists, clinicians, politicians, religious groups, business interests and the public in general. Both high-quality information and engagement with the fields of stem cell research and regenerative medicine are required to facilitate understanding and evidence-based decision-making among European stakeholders.

Follwoing a successful FP7 funded CSA project, EuroStemCell received further funding under EU Horizon 2020 funding. Here EuroStemCell brings together into a single grouping eight current EU-funded stem cell integrated projects, two European National Stem Cell Networks, the European Clinical Research Infrastructure Network, and twenty three other internationally recognized European stem cell research centres.

The objective of EuroStemCell under H2020 funding is to ensure continuation and further development of this existing information portal. We have reconfigured the EuroStemCell consortium, by enlarging it to comprise an extensive grouping of leading basic and translational stem cell researchers, along with ethicists, social scientists, and expert science communications professionals, from across Europe.
1. Information Management.
• EuroStemCell represents the largest multinational partnership of stem cell research consortia, networks and institutions focused on public engagement with stem cell research. This was recognized in 2017 by publication of a peer-reviewed article in Seminars in Cell and Developmental Biology.
• EuroStemCell has established a functional network of expertise which facilitates resource provision and engagement around accurate and high-quality stem cell research information, including ethical and societal considerations.

2. Online engagement & dissemination.
• The website has had 1,626,543 unique visitors since 1st July 2016. This represents over 3.3 million unique visitors over the course of the H2020 funding.
• The translation of key content in five European languages (French, Spanish, Polish, Italian and German) is 98% complete. There is an established network of translators.
• The site currently attracts approximately 75,000 sessions per month.

3. Resourcing active engagement.
• We have developed an optimised multilingual toolkit for public engagement with stem cell research on that has been disseminated to at least 18 European Countries.
• The EuroStemCell partnership collectively has delivered >521 stem cell engagement and outreach events/initiatives (>815 over the course of the entire project) reaching in excess of 3 million European Citizens.

4. Resources for decision-making & the media.
• EuroStemCell has provided personalised responses to over 1166 patient enquiries during this reporting period (1966 over the course of the whole project) and initiated a collaborative and international audit project on how best to support enquirers.
• Specific resources on decision making, stem cell tourism and the marketing of unproven stem cell treatments have been published on

5. Dissemination and capacity building.
• EuroStemCell has delivered (in partnership) 22 training workshops for scientists involved in stem cell outreach or engagement initiatives.
• In addition, EuroStemCell provided a suite of five training workshops at the Hydra European Stem Cell Summer School (2015, 2016 & 2017).
• EuroStemCell facilitated 3 'Sharing best practice’ workshops for 80 European stem cell public engagement and communication practitioners
• EuroStemCell has developed partnerships with a broad range of stakeholders including: the scientific community, healthcare professionals, patient organisations, informal and formal educational organisations, industry, policy networks and media networks.
• The “Start as a Stem Cell” outreach toolkit for scientists has been offered to the entire EuroStemCell network – over the course of the whole project 21 full kits were disseminated.

6. Evaluation and sharing of best practice.
• EuroStemCell has worked collaboratively with an external evaluation agency to complete six large pieces of evaluation work – with a focus on the sharing best practice actions of the project. These are designed to establish the impact of the EuroStemCell project on three different groups; European Citizens, Stakeholders and the entire EuroStemCell partnership.
"The reach of has far exceeded expectations. In English speaking countries (and a growing number of non-english speaking countries) people conducting google searches for terms such as “stem cell treatments” or “stem cells and leukaemia” will find content from near or at the top of their results on the first page. Therefore the collaborative effort of the EuroStemCell partnership is having global impact in empowering people with accurate and accessible information to include in their decision making processes. In addition, international stem cell research consortia and networks are now actively approaching EuroStemCell to form an outreach/engagement partnership. Thus multiplying and extending the reach and potential of the project far beyond the current partnerships. Considerable efforts are being put into finding a sustainable funding solution for the project going forward.

A recent stakeholder survey (JeneSys Associates, February 2018) made the following comments regarding the impact of the project:

""EuroStemCell is highly rated by different types of stakeholders and has made considerable progress towards its stated aims and objectives. The project is delivering a range of positive outcomes for stakeholders. The redevelopment of the website and introduction of structured capacity-building activities have been successful and well-received by all types of stakeholders. The findings presented in this report show that EuroStemCell has developed considerable momentum and extended its reach during the Horizon 2020 funding period. It is recommended that further funding should be provided to continue and expand on the strong foundation that has been created.""

A further report on the impact of the project on the EuroStemCell partners (JeneSys Associates, April 2018) stated:

""It is clear from this evaluation that the Horizon 2020 iteration of EuroStemCell was extremely successful. It achieved a high level of impact for partners, who also reported that it benefitted their audiences. Notably, it met the not insignificant challenge of delivering positive outcomes for a very wide variety of different partners. Significantly EuroStemCell met all partner expectations outlined in the baseline evaluation report, with particularly noteworthy success in respect of sharing best practice and building partners’ capacity for public engagement.

EuroStemCell provided a unique European perspective on stem cell research and stem cells for all types of public audiences that were targeted by partners. Without it, partners would have had to run their own dissemination and communication programmes, with the risks of reduced quality duplicated efforts.""