CAMbrella Final Report

Work package 8:

Communication and dissemination

Leading beneficiary: Gamed (88), Vienna

Objectives:
The specific objectives of WP8 were:

to foster communication among the CAMbrella consortium members and between the consortium and CAM stakeholders including patient and public health care organizations
to establish, host and maintain a website as the common platform for CAMbrella: www.cambrella.eu. The website will make all documents generated by the project publicly accessible.
to identify CAM stakeholders and appropriate target audiences in Europe through which to disseminate information generated by the project
to plan and organize the final CAMbrella conference.

Description of work and results:
From the beginning of CAMbrella Work Package 8 acted as the connecting / networking body within the group and at the same time developed the tools for sustainable dissemination during and after the completion of the project. We prepared proposals for a project logo already in advance for the kick off meeting in Munich in January 2010. The whole group discussed the image of CAMbrella given in the logo.

This resulted in the development and implementation of an appropriate Corporate Identity: Corporate Design, such as a Logo and guidelines for the graphics and work of all WPs, creating templates for spreadsheets and text processing; Implementation of Corporate Identity in the other WPs and their respective activities.

The next important step was to set up the project´s website providing all relevant information. A newsletter was launched that has sent out 12 issues of information about the project, but also about CAM in Europe, giving stakeholder portraits, reports about the CAM field in different European countries, pointing out relevant findings and other CAM related projects, announcing conferences and scientific events etc. Via the website interested readers were able to subscribe to the newsletter, a feature which was used by about 750 readers.

We tried to invite and facilitate the dialogue with relevant stakeholders and the public at large in order to know more about their informational needs about CAM in general and research in particular. The website invited to register as a stakeholder in CAM. 53 institutions did so and have been contacted via letters. In an online questionnaire we approached international stakeholders in order to know more about their informational needs towards CAM. In turn the results of this online survey were the starting point for the discussion with international stakeholders at a workshop in Brussels, dedicated specially to the needs in terms of information about CAM.

The preparation and organization of the final conference with contributions from WP1 to WP7 was the major goal of WP8. It is a disseminative action that targets policy makers on the European level, especially the EU Commission, DG Health and Consumers (Sanco) and DG Research and innovation as well as interested stakeholders and the public at large. Organising the final conference was made substantially easier by the kind support of Dr. Angelika Niebler, Member of the European Parliament, who was kind enough to invite her colleagues to a workshop devoted to the CAMbrella findings on November 28, 2012 inside the Parliament. The project was presented in a more comprehensive way on a full-day final conference the following day. This meeting was kindly hosted by the Bavarian representation in Brussels which proved very useful for all the backstage organisation a conference like this entails.

Disseminative actions and documents had to be established and prepared: A Policy Brief, the document that informs the EU Commission and policy makers about the findings and gives recommendations for future activities. The Policy Brief was achieved in a consensus building process that involved all work packages and was given a final discussion and approval at a meeting of the Scientific Steering Committee. A Project Brochure that summarises the work of CAMbrella for the interested public, practitioners, laymen and stakeholders alike was prepared mostly by the autonomous input of the work packages, WP8 taking the editing role here. We were able to enhance the visibility of the scientific dissemination in pooling many of the papers in a supplement of Research in Complementary Medicine: Forsch Komplementmed 2012;19 (suppl 2). (89)

In all public outreach WP8 always had the task to “translate” the scientific results into texts dedicated for the broader public, for example in the newsletter. WP8 acted as interface between the project and the interested audiences around. Differing interests in the target groups for the newsletter have to be considered in order to catch the attention of readers with different backgrounds.

The project’s website was a state-of-the-art tool to connect with the stakeholders, to enable exchange with them, allow them some participation and interaction. In order to address a younger audience a facebook account was set up as well. To complete the project’s presence in the Social Media media Twitter was added to our public outreach activities as well. All this formed part of the dissemination strategy.

A description of the major features of the CAMbrella dissemination strategy is published (Reiter B et al. Building a sustainable Complementary and Alternative Medicine research network in Europe. Forsch Komplementmed 2012;19(suppl 2):61-68)90. In collaboration with the work package leaders WP8 created a unique project slogan compressing the key messages of all work packages: “CAMbrella – the Roadmap for European CAM Research”.

Potential impact:
The central platform for the dissemination of the information generated by CAMbrella is the project website (www.cambrella.eu) which was established, hosted and maintained under responsibility of a specific Work Package. It offered information on the current status of the project, its progress and the work plan for upcoming project milestones. The website was also used as an instrument for disseminating reports and WP activities. The website was to encourage and stimulate dialogue between the project consortium and interested parties, including the publication of a regular newsletter that combined information on the project with information on relevant CAM research results. Following these objectives 12 newsletters were provided during the 3-years project time. The concept was that each newsletter should focus on one country, on one Work Package to be presented in detail, and to introduce one CAM stakeholder group (as a representative of the Advisory Board). In total, the newsletters comprise more than 60 short reports and articles. The website will stay available after the project has finished, and thus keeping the platform alive for further information and communication of the established research network. The project group will make use of this communication tool in order to facilitate future research projects. Furthermore, the group is discussing ways how to organize itself as European CAM research consortium in order to achieve a sustainable form of entity.

The impact achieved by the project’s processing and its outcomes is multi-faceted:

i) The scientific perspective:
The project’s WPs were designed to enhance the knowledge of CAM in the EU by developing consensus on terminology and collecting information about CAM use, demand for CAM and the legal regulations on CAM provision. Further objectives were to identify major conditions treated with CAM and to explore the reasons why patients choose CAM. Based on the available information, a reasonable roadmap for future research projects has been suggested to fill the existing knowledge gaps and to facilitate that CAM practice is based on appropriate evidence. All actions intend to inform EU policies and decision makers in order to identify and support research programs of excellence and ensure a solid evidence base for the delivery of all aspects of healthcare to European citizens.

The project successfully published a paper describing the background, the objectives, the concept and the organization of the work plan available with open access at the beginning of the second project year. After successful negotiations with Karger Publisher a supplement issue of ‘Forschende Komplementärmedizin / Research in Complementary Medicine’91 was established including articles with the main findings of all Work Packages. The issue was printed and accessible online for free from the time of the final conference. Some more articles already published in various peer-reviewed journals describe further findings and aspects deriving from some working groups. Some more manuscripts are under preparation, especially one presenting the proposal for a roadmap of CAM research in Europe.

CAMbrella is just publishing all deliverables as Work Package Reports92 at Phaidra, an open electronic repository hosted by the University of Vienna (phaidra.univie.ac.at). The system is operating in close cooperation with the EU-project OpenAIRE and warrants that the data in Phaidra is archived university-wide, permanently secured, systematically input, set up as metadata, and available worldwide around the clock without logging in.

CAMbrella was presented at several international conferences on CAM research, and thus bringing the European project in an international academic discussion. In April 2013, the project findings will be presented in a 2-hour special symposium at the International Conference on Complementary Medicine Research (http://www.iccmr2013.org/ ). The roadmap for CAM research as a main part of the outcome will be presented in a plenary session with expected 500 attendees.

In Italy, CAMbrella project partner ASSR (Agenzia Sanitaria et Sociale Regionale, Emilia-Romagna) will hold a symposium in Bologna on February 28, 2013. The intention is to present and to discuss the CAMbrella CAM research roadmap for regional or national usage in Italy. For this purpose the document has been translated into Italian to reach a maximum of impact for the Italian health care systems.

ii) The perspective of a broader target group beyond science:
In line with the nature of the project as a coordination action this perspective has been considered vital. Several measures were adopted in order to initiate and facilitate the communication with authorities, policy makers and various stakeholder groups in the field of health care, public health and CAM.

A specific ‘Stakeholder Workshop’ was held in order to learn more on the informational needs of different associations and stakeholder groups regarding CAM and to discuss improved strategies for future communication. Apart from the scientific articles a Policy brief as well as a more in-depth Project Brochure was compiled to transport the main findings of the project in a concise way understandable for a broader public.

The importance of this approach was mirrored in the concept of the final conference split into two events addressing two different target groups. There was a workshop on one side held in the European Parliament dedicated to policy makers, and on the other side the bigger conference addressing a mixture of scientific representatives, stakeholder groups and NGOs.

Altogether, about 60 dissemination activities were documented during the project run-time (see listing in section 4.2 of this report). The most frequent type of activity has been presentations giving an overview of the project or focussing on single aspects from the work groups in various countries addressing different target groups. Posters and flyers were created and disseminated, and several interviews were performed on general topics related to CAM or more specifically project oriented.

A lot of reports mentioning CAMbrella appeared in the media. A press review as a result of a Google search and a systematic review of media agencies revealed a list of about 80 hits (see the list attached to the final report). This collection is not more than a rough indicator since it includes predominantly German-speaking reports due to the fact that the coordination and management of the project was located in Germany. Unfortunately, it was not feasible to screen systematically all national and regional media activities in other countries represented in the project.

In UK, the Parliamentary Group for Integrated Healthcare is organizing a conference in the House of Commons on March 5, 2013, where CAMbrella will be presented by project partner George Lewith and Advisory Board member Stephen Gordon from ICCH. The purpose of this meeting is to share the project’s recommendations.

Finally, CAMbrella will be presented at the ‘Forum Life Science’ on March 13-14, 2013, in Munich (www.bayern-innovativ.de/fls2013 ). Project partner BayFOR is involved in the organisation of this fair covering a broad spectrum of scientific areas linked with various economic and societal fields.

iii) The coordination perspective:
The project was creating and maintaining a coordinated EU network of researchers and stakeholders within the EU and beyond its borders. The network also aimed to foster dialogue with patients, research and healthcare funders (both public and private) and specific provider groups such as homeopaths and acupuncturists. Various organisations, including those representing conventional medicine or patients’ interests in general, were encouraged to participate in the project. The information generated by the university-based, research-focused core of the collaboration will thus have a substantial and strong impact on how CAM is looked at and provided in the EU’s diverse healthcare systems. The outreach of the project will go beyond the European Union as CAM organizations in Russia indicated interest as well as CAMbrella became already apparent in US where the project will be presented again in May 2013 at the symposium of the American Academy of Medical Acupuncture. Two members of the project group are consultants of WHO on Traditional Medicine, and thus CAMbrella findings may also feed into these international projects. CAMbrella will also keep close linkage to the European Chapter, a regional interest group within the International Society for Complementary Medicine Research ISCMR.

The outcome of the CAM-focused CAMbrella project is designed to contribute to the process of developing an appropriate strategy for better healthcare in Europe. This will be soundly evidence-based and is likely to involve a wide range of different interventions. To make the suggested roadmap for CAM research in Europe operational a centralized and academically supported EU CAM centre should be established. CAMbrella proposes that the EU actively supports an EU-wide strategic approach to facilitate the development of CAM research, through the funding of such an institution that looks into the situation of CAM and gives research-based guidelines on how to address it. Its aim would be to actively stimulate high quality research on CAM in the EU based on pan-European collaboration, through an independent research strategy aligned with EU health policy.

Regarding the upcoming EU Framework Programme Horizon 2020 CAMbrella supported efforts aiming that CAM research projects should be adequately represented in the work programme’s topics to apply for grants. The proposal of the European Commission concerning the Specific Programme ‘Tackling Societal Challenges’, section ‘Health, demographic changes and well-being’ opens with the basic statement “The challenge is to improve the lifelong health and wellbeing of all”. With increasing life expectancy the incidence of chronic diseases and cancer will rise. Interventions of Complementary Medicine will potentially provide promising solutions for prevention, treatment and rehabilitation of these diseases. But there is still need for rigorous research projects to assess the evidence. As a first step the Committee on Industry, Research and Energy (ITRE) agreed on an amendment to the section on health, demographic changes and well-being including explicitly CAM as medical discipline to be considered (Report A7-0002_2013 on the proposal for a Council decision establishing the Specific Programme Implementing Horizon 2020 – The Framework Programme for Research and Innovation (2014 – 2020). Committee on Industry, Research and Energy (ITRE). Rapporteur: Maria Da Grac̡a Carvalho).