Mapping R&D in the neglected diseases – what do stakeholders want?
Currently, information on neglected disease R&D is available from a range of sources and in a variety of formats including: G-FINDER for funding, the Global Health Primer for information on R&D products and pipelines and other agencies including ClinicalTrials.gov, the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA), annual reports from Product Development Partnerships (PDPs) and through grantees or partner research organisations. The global health R&D Observatory has been established by WHO to meet this challenge and provide a centralised, comprehensive, reliable data source.
A principle central to the development of the observatory is to build on existing resources and this report from Policy Cures investigates what stakeholders would like from a tool that integrates data from the G-FINDER survey and the product pipeline in the Global Health Primer as one element of the health R&D observatory.
Public briefing held by the WHO Secretariat at HQ on 6th December 2013
Developing a global health R&D Observatory is one of the actions agreed by the Member States under the Global Strategy and Plan of Action on Public Health, Innovation and Intellectual Property. This briefing was attended by representatives of 37 Member States, 10 civil society groups, some PDPs and funders, with a few joining via the WebEx online conference facility. Following the presentation, there was a lively Q&A session where the following points were made:
- Identifying user needs will be key to the success of any networked platform and regional/national consultations will be an important next step.
- Different regions and countries will have different needs, and to maximise usage, data will need to be available in more languages than English.
- Access via the internet will be either very difficult or impossible in some countries, so thought needs to be given to different ways of accessing and inputting the.
- The R&D Observatory sits within the innovation landscape and links will need to be established between the Observatory, analysis and mapping of research gaps, and how priorities are identified.
- There was interest in how a high level classification system for research could be agreed upon in order to enable better comparison between research portfolios.
- While some data from industry was available via clinical trial registration, the product pipeline database at Emory university and G-FINDER collating data from private enterprise will be an important area to incorporate.