Finding Adequate Information: A Major Challenge for Policy-Makers in the Field of Cancer
Authors: Courtay de Gaulle A. , Bey P. , Carayon A. , Ly A. , Balawa C. Gombe M , Godet J. 
Published: September 2018

Background and context: A global cancer epidemic is developing (GLOBOCAN 2012). In the case of low- and-middle-income countries, difficulties are cumulative: inadequate health systems, lack of training for professionals. Drastic decisions have to be taken in a very complex field. Good decision needs good information. What about information dedicated to policy-makers: to decide a question, they need specific information, marked by these features: synthetic, clear, scientifically validated. Actually, this is not easy to find. Moreover policy-makers can't really benefit from: 1. Information for health professionals which is complex and overabundant (the request “cancer” on PubMed “out” nearly 1.5 millions references). 2. Documents or testimonials for patients. Written by scientific societies or patients' associations, they mostly focus on 2 topics “understand your disease” and “how to cope with”. 3. Information from the Web, not always reliable in terms of quality. Strategy/Tactics: While policy advisors and international organizations provide appropriate studies and reports, mostly focused on “what should be done”, we believe that knowledge of basic cancer data are necessary to understand the proposals. We talk about issues like “what is cancer”, “what exactly cover radiotherapy, oncological surgery…”. Regarding French speaking Africa, Alliance Ligues Africaines and Méditérranéennes (ALIAM) and The French League have produced targeted information for decision-makers. The document was presented in Brazzaville in June 2017. Access to this book is free: www.livre-cancer.aliam.org . The editorial method was discussed and we made the choice to write short sheets, to quickly understand the useful definitions and problems. Rather than comprehensiveness, a pedagogical will and a desire for clarity guided the writing. Diagrams and photos had to be abundant to facilitate understanding. Moreover, this format allows a permanent update of the subjects and the introduction of new topics as needed. What was learned: On the basis of this experience, ALIAM and the league are convinced that a pedagogic document with an international vocation would be useful for all policy makers. Proposal for action: UICC would be the perfect organizer of a working group to produce such a document. The goal would be to develop a consensus text which resume essential data on all common themes of cancer. About 25 themes could be identified, e.g., definition and mechanisms of development of cancers, risk factors, screening and early diagnosis, anatomic pathology and telepathology, molecular biology, imaging and interventional radiology, surgery, radiotherapy, chemotherapy and innovative therapies, palliative care etc. Moreover, focus on specific location of cancer (breast, cervix, lung…) and pediatric cancers should be developed. Then, it would be easier for any world regions to supplement this validated information with additional specific data describing the local situation. Hierarchizing action priorities would be facilitated.