ZonMw launched an action plan for new knowledge of Lyme disease in research, practice and policy in March 2016. Representatives of patients, researchers, professional practitioners, policymakers and companies were involved in compiling the document.
Implementation of the action plan should ultimately improve both the practice of and policy on diagnosing, treating and preventing Lyme disease. It will also help create a good knowledge and research infrastructure.
The Ministry of Health commissioned ZonMw to draft a research agenda in 2014. The action plan is in fact broader than stipulated in the Ministry’s commission, encompassing both research topics and other activities. Those topics and activities are regarded as necessary to bring about the desired improvements. The action plan covers four main subjects: basic knowledge, diagnosis, treatment and prevention. The participants have prioritised research topics for each of the main subjects.
The plan contains ambitious targets for both rapid application of new tests and treatment methods and enhancement of basic knowledge over the next five to ten years. Examples of other essential activities are the establishment of a register and biobank to allow patients to be monitored for a longer period; a procedure for updating knowledge for physicians; a guideline/decision model for diagnosis and treatment; and a decision aid for patients.
The Lyme disease action plan sets out a list of the actions (research and other activities) identified and discussed by people from various disciplines and with various perspectives including Lyme patient advocacy groups. A number of sessions was held between late 2014 and early 2016. ZonMw selected the participants on the basis of their knowledge and experience (professional or otherwise) and asked them to take part in a private capacity. Though their knowledge and experience are related to the organisation where they work, the researchers, professional policymakers and practitioners did not formally represent their organisation in this process.
Extra efforts are required to implement this plan. The document is available free of charge to research institutes and other organisations that are willing to help reduce the problems associated with Lyme disease. They are invited to align their research with this priority list.