World Health Organization 6 December 2013

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1 World Health Organization 6 December 2013 The copyright of this image (these images) is vested in WHO. The image(s) may be downloaded, reproduced and published, including editorial usage by media. The images may not be sold, redistributed or used for the promotion of any commercial products, services or entities. Images must be credited with the following byline: "WHO/[name of photographer]" L'OMS détient le copyright de cette image. Cette image peut être téléchargée, reproduite et diffusée à des fins de recherche ou d'étude personnelle, publique, ou pour une utilisation dans un contexte éditorial. Toutefois, elle ne peut être ni être vendue, ni distribuée à des fins commerciales. De même, elle ne peut pas être utilisée pour la diffusion de produits ou de services commerciaux. Pour toute utilisation, elle doit obligatoirement être créditée de la manière suivante: "OMS / [prénom et nom du photographe]. 1

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3 World Health Organization 6 December 2013 The mandate of the CEWG was defined in the resolution WHA The principal task of the CEWG was to take forward the work conducted by the previous EWG. Specifically, the CEWG was asked to deepen the analysis of the proposals in the Expert Working Group s report. The overall objective of both the EWG and the CEWG was guided by the GSPA-PHI namely to examine current financing and coordination of research and development, as well as proposals for new and innovative sources of financing to stimulate research and development related to Type II and Type III diseases and the specific research and development needs of developing countries in relation to Type I diseases. 3

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8 The copyright of this image (these images) is vested in WHO. The image(s) may be downloaded, reproduced and published, including editorial usage by media. The images may not be sold, redistributed or used for the promotion of any commercial products, services or entities. Images must be credited with the following byline: "WHO/[name of photographer]" L'OMS détient le copyright de cette image. Cette image peut être téléchargée, reproduite et diffusée à des fins de recherche ou d'étude personnelle, publique, ou pour une utilisation dans un contexte éditorial. Toutefois, elle ne peut être ni être vendue, ni distribuée à des fins commerciales. De même, elle ne peut pas être utilisée pour la diffusion de produits ou de services commerciaux. Pour toute utilisation, elle doit obligatoirement être créditée de la manière suivante: "OMS / [prénom et nom du photographe]. Title : HQ building spring 2013 Headline : Different views of the Headquarters in Geneva, Switzerland Credit : WHO /Pierre Albouy Date of exposure : 22/04/2013 Country : Switzerland City : Geneva Location : WHO Headquarters Keywords : HQ Geneva ; man ; flag Country related : Switzerland WHO Regions : EURO -Regional Office for Europe 8

9 Mapping of available health research and development data: what's there, what's missing, and what role is there for a global observatory? John-Arne Røttingenet al The Lancet 12 October

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11 Participants: WellcomeTrust, BVGH, COHRED, Emory University, NIH, Bill & Melinda Gates Foundation, MRC UK, Institute of Global Health Innovation Imperial, Net Solutions, OECD, Policy Cures, Research Africa, RICYT, UNESCO, WHO. 1) Build on what is there Adapt or scale existing survey and use methods that are already familiar. 2) Build Small think big Identify the essential key data points that describe the research in enough detail to be useful but not so much detail as to be a burden to collect. 3) Identify value added at all levels What is in it for the contributors? How do stakeholders benefit? 4) Get going grow and adapt Balance the need for planning and partnership with many stakeholders with getting pilot studies up and running and making data available as it is easier for people to react to what is there. If value can be shown, and trust and credibility built in the mechanism, then information is more likely to flow. 11

12 Health R&D investments and publications as a proportion of total of: (A) Health R&D investments as proportion of total R&D investments related to GDP per person (2010) in 70 countries. (B) (B) Proportion of publicly funded health R&D investments related to GDP per person (2010) in 41 countries. (C) (C) Number of publications published in health-related journals in as a proportion of the total number of publications related to GDP per person (2010) in 174 countries (data from Thomson Reuters: Web of Science [Evidence]). (D) (D) Proportion of total R&D investments for health in relation to proportion of total publications in health. R&D=research and development. GDP=gross domestic product. PPP$=purchasing power parity-adjusted dollars. 12

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14 World Health Organization 6 December 2013 ICTRP is a global initiative that aims to make information about all clinical trials involving human beings publicly available. It was established in 2006 in response to demand from countries through a World Health Assembly resolution It publishes the ICTRP Search Portal (255,000 records) collecting 20 items per record in English (Trial Registration Data Set) And the website (6 UN languages) It publishes International Standards for Clinical Trials Registration: Content, Quality and Validity, Accessibility, Unambiguous Identification, Technical Capacity, Administration and Governance WHO Registry Network 16 Primary Registries & Data Providers:Australia, Brazil, China, Republic of Korea, India, Cuba, EU, Germany, Iran, ISRCTN (UK), Japan, Netherlands, South Africa, Sri Lanka, Thailand, USA 3 Partner Registries: Germany 2, Hong Kong 1 Potential New Registries: Philippines, Peru, Singapore, Mexico, Spain Additional services:universal Trial Number (UTN), Webservices, Newsletter (800+), XML download, Bridging, Crawling Collaboration: Overcome failure to Publish negativefindings (OPEN), Pan African Clinical Trial Alliance(PACTA) 14

15 World Health Organization 6 December 2013 Hits is a measure of all activity e.g. search engines Visits are measure by people with an IP address. 15

16 World RePORTwebsite Interactive map of research investments made by nine international research funding agencies in sub-saharan Africa. 16

17 Health Research Web (HRWeb) is a web-based, interactive platform aimed at improving health, equity and development through research. HRWebis particularly aimed at research focusing on improving health in low and middle income countries and populations, but it will be useful to high income countries as well. Health Research Web is a web-based information and management platform and, as a means to that end, also an online community of people interested in building a high-quality information and management system in a spirit of mutual respect and in pursuit of 'health for all' by enabling all who work for health, equity and development through research to find, use and share information needed to achieve their goals. Our inspiration came from a research management information system developed for and with the directorate of Science and Technology -DECIT of the Science, Technology and Strategic Inputs of the Ministry of Health in Brazil. HRWebis a growing source of information on the structure, organisation, financing and prioritisationof research for health in and for low and middle income countries. It is not primarily a research database these can be found elsewhere. Instead, HRWeb's unique contributions are that: a) it organisesglobal information on research for health from the point of view of low and middle income countries; b) it captures research system information enabling countries and institutions to govern and manage health research as an essential aspect of increasing health, equity and development; c) it makes this domain interactive, open to the public to everyone not just to research institutions, donors or industry; and d) it creates a platform that can be used for internal institutional management or for sharing institutional, national or regional data with the world. 17

18 The Pan American Health Organization/World Health Organization (PAHO/WHO) works actively to promote innovation in health technologies. Intrinsically linked with innovation is the goal to improve access to essential medicines, biologicalsand diagnostics in the region. To achieve this goal, PAHO/WHO has developed the Regional Platform on Access and Innovation for Health Technologies. This resource is composed of a series of virtual tools designed to support and promote technological innovation, access, rational use, regulation and governance of health technologies from a public health perspective. PAHO/WHO expects the platform to facilitate the development of linkages between stakeholders for innovation in health systems that extend beyond institutional, country and sector boundaries. The platform will also serve as an instrument to channel reliable information for the development of health products that constitute a priority for the Americas. It will support the development of enabling environments for technological innovation within a framework of strengthened national health and regulatory authorities that can ensure access to quality health technologies. 18

19 Headline findings of a 2013 workshop organized through WPRO. Use of the mandatory ethics review system to capture high level info related to health research involving human subjects. 19

20 Headline findings of a 2013 workshop organized through WPRO. Use of the mandatory ethics review system to capture high level info related to health research involving human subjects. Limitations: Currently does not capture research that does not require any formal approval by ethics review committees Hard to implement where approval procedures are not clear or are too complicated; and in larger countries with hundreds of ERCs with different capacity and their own unique procedures. Forward: The system will provide a proof of principle to expand to other areas (e.g. linking with funding agencies) 20

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31 G-FINDER is part of Policy Cures and funded by the Bill & Melinda Gates Foundation since 2008, five years initially and now it has been extended 3 more years. G-FINDER measures: 31 neglected diseases; 134 product areas (drugs, vaccines, diagnostics, microbicidesand vector control products); Platform technologies (adjuvants, delivery technologies, diagnostic platforms) and all types of product-related R&D. They measure funding on 31 neglected diseases which they designated using a panel of international experts predominantly focusing on those diseases that proportionally affect low and middle income countries, where there is a R&D gap (i.e. there is no existing product OR improved or additional products are needed) and there is market failure (i.e. there is insufficient commercial market to attract R&D by private industry). Data is collected from working with funding agencies and product developers, not with countries. They cover research from basic to phase 4 clinical trials. They get data from around240 organizations globally with dominance from public sector. They follow the money and they report on 56 countries, 29 of which are high income, yet 90% of the data is from those high income countries. To obtain data from Brazil, India and South Africa has proven to be expensive and resource intensive and the returns of data were low. 31

32 The Global Health primer developed by Bio Ventures for Global Health is now housed at Emory University. Emory is being re-structured integrating various disciplines into the research component, such as the schools for management and business. Emory works with 25 neglected diseases including 8 of the WHO NTDs. The Global Health Primer: Tracks and analyzes progress in global health research and development; Provides an evidence base to support decision making, policy change, and action; and Brings new innovators to the table to address the most pressing medical needs of the poor. The Primer is organized to allow allows users to: Search by disease; Search by drug targets (e.g. kinases); Search by technology (e.g. vaccines); Diagnostics; Pipeline for each disease, target, technology; Updated via data collection directly from R&D sources, media, publications 32

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43 World Health Organization 6 December 2013 The copyright of this image (these images) is vested in WHO. The image(s) may be downloaded, reproduced and published, including editorial usage by media. The images may not be sold, redistributed or used for the promotion of any commercial products, services or entities. Images must be credited with the following byline: "WHO/[name of photographer]" L'OMS détient le copyright de cette image. Cette image peut être téléchargée, reproduite et diffusée à des fins de recherche ou d'étude personnelle, publique, ou pour une utilisation dans un contexte éditorial. Toutefois, elle ne peut être ni être vendue, ni distribuée à des fins commerciales. De même, elle ne peut pas être utilisée pour la diffusion de produits ou de services commerciaux. Pour toute utilisation, elle doit obligatoirement être créditée de la manière suivante: "OMS / [prénom et nom du photographe]. 43

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