It’s a small world – paediatric CAM initiatives in the EU

Introduction

Connie Winther, Ines von Rosenstiel, Nicola Robinson, Rhonda Lee, Pankaj Shah, Cecilia Bukutu, Rosalie Koolen, Arine Vlieger, Karlien Bongers, Marion Eckert, Shay Pintov, Sunita Vohra (corresponding author)

With the recognition of increased paediatric use of CAM, there has been a growing need for specialised information and related networks to inform practice and facilitate communication. In Canada, the Pediatric CAM Research and Education Network (PedCAM) (http://www.pedcam.ca/) was created in 2004 in response to two national fora that each identified it as the number one priority to enable the field. As part of its mission to foster collaboration and advance paediatric CAM research, education, policy and decision-making, PedCAM hosted a series of meetings in 2006/07 to determine what role networks should play. As part of this initiative, PedCAM hosted an invitational meeting for Paediatric Integrative Medicine (PIM) leaders from conventional settings followed by a one-day research conference during the 14th Annual Symposium on Complementary Health Care in Exeter in December 2007. At both of these meetings, guided discussion focused on answering the question: ‘What can paediatric CAM networks do for you?’

A total of nine European leaders in paediatric CAM attended the invitational meeting, in addition to PedCAM representatives. These paediatric CAM leaders were identified through word of mouth from North American and European contacts and included representatives from paediatrics, surgery, oncology and psychology. The invitational meeting provided an opportunity for each leader to present on regional initiatives, plus time to discuss the roles of networks, and explore opportunities for collaboration.

Attended by 49 individuals from a variety of conventional and CAM disciplines, the paediatric CAM research day consisted of two keynote speakers, presentations by seven of the leaders in paediatric CAM, scientific presentations, poster sessions, and an opportunity for breakout group discussion. The research presented has been published in Volume 12, Supplement 1 (2007) of FACT.

The role of paediatric CAM networks

Network presentations and discussions in the invitational meeting identified that paediatric CAM networks play a role in (i) networking; (ii) advocacy and policy; (iii) research; (iv) education; and (v) clinical practice. This framework was used as the basis for the breakout groups during the paediatric CAM research day, with a detailed list of roles reported in Table 1.

Networking activities include linking research networks, clinical networks and educational initiatives, CAM and healthcare colleges and universities for dissemination and transfer of knowledge. Networking should not only draw on existing relationships, but also rely on its strength for maximum dissemination. Use of existing technologies such as social network software and chat rooms would enable networking opportunities across geographic distances and strengthen international collaboration.

Paediatric CAM networks are a natural choice for advocacy and policy work given the strength in number and diversity of members, and existing champions within the networks. Advocacy work could include development of policies for standards of care, provider education and self-monitoring, and effective communication with media, particularly in the areas of risk and safety. Ideas for policy and procedure development include the sharing of documents related to setting up PIM clinics.

The research role of paediatric CAM networks was twofold; first to serve as a repository of evidence-based research knowledge, and second to be a source of research partnerships for multicentre research. As a research repository, links to CAM utilisation studies, safety data and outcomes databases would enable larger and more complex research studies to take place. Providing expert advice on literature searching such as controlled vocabulary would facilitate knowledge sharing.

Possible education initiatives for paediatric CAM networks include both formal education programmes and continuing education, for both conventional providers and CAM providers. Shared resources, such as curriculum materials and exam questions, and shared experiences of educational successes and barriers to success, would help the field advance integration and practice.

Paediatric CAM networks can play a role in clinical practice through the development of policies for PIM clinics, promoting the disclosure of CAM use by parents, and sharing of clinical resources (e.g. preferred websites, patient handouts, standards of care, guides to the development of PIM clinics). Using technologies such as clinical web conferences and telehealth opportunities would also enhance and facilitate clinical practice.

Paediatric CAM network development in the EU

The paediatric CAM leaders focused on forward thinking and long-term goals. The desired outcome of paediatric CAM networks could be described as systematic change, transformation, paradigm shifts, and innovation in paediatric healthcare, and furthering the philosophy and implementation of integrative medicine as a whole. With this in mind, the group revised a mission statement for network development that was created during previous PedCAM network meetings held in Toronto in May 2007^a, adding in definitions of health and integrative medicine, such that the revised mission statement reads:

In the interest of promoting the health* and wellness of children around the world, these paediatric integrative medicine** organisations agree to explore opportunities for collaboration in the areas of research, education, clinical practice, and advocacy.

*where health is defined as ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’.¹

**where integrative medicine is defined as ‘the practice of medicine that reaffirms the importance of the relationship between practitioner and patient, focuses on the whole person, is informed by evidence, and makes use of all appropriate therapeutic approaches, healthcare professionals and disciplines to achieve optimal health and healing’.²

^aThe original mission statement was created in May 2007 by Kathi Kemper, Rhonda Lee, Larry Rosen, O.J. Sahler, Pankaj Shah, David Steinhorn, Leah Vanderjagt and Sunita Vohra.

The possibility of creating a European members’ section as part of an international network hosted within the PedCAM website was discussed. Creating such a section within an existing website was considered to be the most feasible option; adding to an existing infrastructure would be less resource-intensive than starting a new site. A European section would appeal to the need to identify and better understand the cultural differences between the diverse European countries with respect to integrative medicine practices and policies. Future plans for a European section could include a listing of integrative paediatric clinics in Europe, such as the Children’s Complementary Therapy Network (CCTN) in the UK (http://cctn.freshwinds.org.uk/) and philanthropic organisations like the National Information and Knowledge centre Integrative Medicine (NIKIM) (http://www.nikim.nl) in the Netherlands, that further the philosophy and implementation of integrative medicine in Europe.

Next steps

A need to ‘network the networks’ was also identified, with a vision of multi-nodal, interconnected, non-hierarchical relationships between networks. While regional networks are needed to fulfil local needs, linking national networks would advance the field of paediatric CAM with international membership, scope and communication. The feasibility of developing such an interconnected international network was discussed. The first step (currently in progress) is the identification of all networks and leaders in the field, and determining the interest in developing such a network. Through such international efforts we can identify and recruit like-minded practitioners, researchers and educators, to brainstorm and ensure sustainability for future development and rapid implementation of research results.

Our process has yielded saturation – after multiple such initiatives in North America and Europe, we are no longer hearing new concepts about what role paediatric CAM networks can play in advancing the field of paediatric CAM. This may be due to PedCAM’s decision to meet with leaders from conventional integrative medicine settings first, so as to reach agreement with groups that are more homogeneous and more likely to be aligned to help develop the growth of the network.

PedCAM will now focus on how the interconnections between organisations can happen. Identifying how to develop international linkages between paediatric CAM networks is already on the agenda for future conferences; for example the paediatric CAM meeting planned in conjunction with the Third International Congress of Complementary Medicine Research, March 2008, in Sydney (http://www.iccmr2008.com). Future plans include identifying potential links with paediatric CAM organisations to enhance collaboration and communication across disciplines. Our common interests for the health and well-being of children bring these diverse international communities together, creating a shared vision for the future.

Acknowledgements

We would like to acknowledge funding support for this meeting from the Lotte & John Hecht Memorial Foundation. The PedCAM network is funded by the Lotte & John Hecht Memorial Foundation and the Sick Kids Foundation. Sunita Vohra receives salary support from the Alberta Heritage Foundation for Medical Research and the Canadian Institutes of Health Research.

References

1. World Health Organization.. What is the WHO definition of health? [website], <http://www.who.int/suggestions/faq/en> accessed January 31, 2008.
2. Consortium of Academic Health Centres for Integrative Medicine. Definition of Integrative Medicine. [website], <http://www.imconsortium.org/cahcim/about/home.html> accessed January 31, 2008.