The neglected disease R&D survey
1. Why do we need a survey on neglected disease R&D investments?
The goal of the G-FINDER survey is to help funders better target their investments in neglected disease R&D. We track global neglected disease investment annually, and provide the results in easy-to-read annual reports.
Prior to the G-FINDER survey, donors interested in funding neglected disease R&D had to make substantial investment decisions in the absence of accurate data regarding funding flows, gaps and duplication. Information was often out of date, patchy and unreliable or was not comparable across surveys due to different accounting and reporting methodologies. In some areas there was an almost total lack of information.
We hope that by providing funders with better information, the G-FINDER survey will stimulate increased efficiency and investment into neglected disease R&D, and thus improve global health.
2. What is the scope of the survey? What information are you collecting?
The G-FINDER survey collects data on funding for R&D to deliver new tools to diagnose, treat and prevent the transmission of neglected diseases, including drugs, preventive and therapeutic vaccines, diagnostics, microbicides, and vector control products. The survey currently tracks R&D investments in 33 neglected diseases, and covers all stages of R&D, from basic research through to the clinical trials needed to introduce a product for public health use. For more information on the diseases and product categories that are included in the G-FINDER scope please see the neglected disease R&D matrix.
3. Will this survey be conducted annually?
The Bill & Melinda Gates Foundation has generously funded Policy Cures and Policy Cures Research to conduct the last 11 annual G-FINDER surveys as well as the Reproductive Health survey conducted in 2014. The future of the survey will depend on securing additional support to allow G-FINDER to continue to be provided as a global public good.
4. How does this survey fit in with other R&D funding surveys?
While the G-FINDER survey is unprecedented in its coverage of neglected diseases and products, several other groups are working to analyse R&D funding for selected neglected diseases and/or products. Wherever possible, Policy Cures Research works closely with these groups to align survey design, share data and avoid duplicating requests to funders. Policy Cures Research is also heavily involved in global efforts to coordinate and harmonise the collection and reporting of data for neglected disease R&D.
5. How was the G-FINDER scope defined? Has it changed over time?
Prior to G-FINDER, there was no generally accepted definition of what constitutes a 'neglected disease' and, for many diseases, no agreement on what new products were needed. We therefore took a number of steps when establishing the G-FINDER survey to reach a consensus position. We first created a list of all diseases classified by major health bodies or publications as a 'neglected disease'. This list was then assessed by an international Advisory Committee of 17 neglected disease and R&D experts who were asked to filter it against three criteria, with a disease being accepted as 'neglected' for the purposes of the G-FINDER survey only if it met all three criteria. These criteria were:
Disease morbidity and mortality disproportionately affect people in developing countries; AND
There is no existing product to treat/prevent that disease, OR a product exists but is poorly suited for developing country use; AND
There is an insufficient commercial market to stimulate R&D by industry.
Where there was disagreement between experts, their decisions were supplemented by advice from additional disease and R&D experts.
Over the past 11 years of G-FINDER, we have maintained ongoing consultation with our Advisory Committee regarding changes to the survey's scope. Changes over the course of the survey are outlined below:
In year two of the G-FINDER survey (FY2008) the typhoid and paratyphoid fever disease category was expanded to include non-typhoidal Salmonella enterica (NTS) and multiple Salmonella infections, while R&D for lymphatic filariasis diagnostics was added.
For FY2013 (the seventh year of the survey) we established a new Advisory Committee to enable a thorough review of the scope of G-FINDER. As a result the survey was expanded to include three additional diseases: cryptococcal meningitis, hepatitis C (genotype 4) and leptospirosis. Dengue vaccines were determined to no longer fit the criteria for inclusion in the G-FINDER survey given the emergence of a commercial market, and dengue vaccine R&D funding (including all previously reported investment) was removed from the suvey. All other dengue product areas were retained.
For FY2014 (the eigth survey year), the hepatitis C category was expanded to capture investment in R&D for two additional genotypes (genotype 5 and 6) that disproportionately affect people in developing countries.
In response to the 2014 West African Ebola epidemic, the G-FINDER survey scope was expanded for FY2014 (the eighth survey year) to capture investments in Ebola R&D for diagnostics, drugs and preventive vaccines, as well as basic research.
For FY2015 (the ninth survey year), the survey scope was further expanded to include other African viral haemorrhagic fevers (VHFs). In addition to Ebola, this new category allowed respondents to also report R&D funding for Marburg and other African VHFs.
For financial year 2016 the bacterial pneumonia & meningitis category was expanded to include developing country-focused basic research for both Streptococcus pneumoniae (S. pneumoniae) and/or Neisseria meningitidis (N. meningitidis). Developing country-specific research into therapeutic vaccines for HIV/AIDS was also added as a restricted category, reflecting emerging research into broadly neutralising anti-HIV antibodies (bNAbs) and their potential use in developing countries.
For FY2016 (the tenth survey year), the bacterial pneumonia & meningitis category was expanded to include developing country-focused basic research for both Streptococcus pneumoniae (S. pneumoniae) and Neisseria meningitides (N. meningitides). Developing country specific-research into therapeutic vaccines for HIV/AIDS was also added as a restricted category, reflecting emerging research into broadly neutralising anti-HIV antibodies (bNAbs) and their potential use in developing countries.
A separate scope definition was also developed for the financial year 2016 to identify investments in R&D for all priority EIDs identified in the WHO R&D Blueprint for action to prevent epidemics. EID data is not included in the G-FINDER neglected disease report, and will be reported separately.
For financial year 2017, Policy Cures Research changed how funding for vector control R&D and funding targeted at multiple diseases is reported by G-FINDER. Some of these changes result in funding falling into different categories than it would have in previous years, while other changes expand the scope of funding included in G-FINDER.
In conjunction with our ongoing collection of EID R&D investment data, the latest version of our survey also allowed participants to provide separate information on funding intended to support research applicable to both neglected diseases and EIDs, under core funding, platform technologies and other R&D. Our inclusion of this funding resulted in an expanded scope for each of these categories. Funding for R&D targeted exclusively at EIDs continues to be excluded from G-FINDER.
Policy Cures Research also introduced a new category, multi-disease vector control products, for financial year 2017, to capture funding for R&D not targeted at one specific vector-borne disease. This category includes funding that cannot be allocated to a single neglected disease, resulting in a change to how grants are classified, but not to G-FINDER’s overall scope. However, the new category also captures funding for R&D applicable to both neglected diseases and EIDs, which would not have been included in previous years.
The 2018 report also added R&D stage categories to the biological vector control products and reservoir targeted vaccine categories, reflecting the developing international consensus on the R&D pathways for these products. These changes affect the way funding is categorised, but do not expand the scope of G-FINDER.
Finally, for financial year 2017 the G-FINDER scope was expanded to include R&D investments in chemical vector control products for Chagas’ disease and diagnostics for tapeworm infections; and the chemical vector control product category now explicitly includes funding of novel insecticide-based tools for controlling outdoor transmission, provided they are designed for use in developing countries.
6. What is the difference between the World Health Organization’s list of neglected tropical diseases (NTDs) and the G-FINDER neglected diseases?
G-FINDER and the World Health Organization (WHO) use different criteria for inclusion and exclusions of diseases. Notably, the WHO focuses on the geographical distribution of the disease in tropical and subtropical regions as well as the developing country status of endemic nations. The criteria for G-FINDER diseases, outlined in Q5 above, takes into account product gaps and needs as well as market failure. The WHO NTDs list includes 20 diseases, some of which align with the scope of G-FINDER, which covers 33 diseases. For a comparison WHO and G-FINDER diseases please see here.
7. How was the survey tool designed?
The survey tool was designed with the guidance of an international Stakeholder Network of key investors in neglected disease R&D, who also complete the survey. The Stakeholder Network comprises 30 public, philanthropic and private representatives, whose organisations stand out as the largest funders of neglected disease product R&D, or who have key significance in the field. Their input has helped ensure that the information collected in the G-FINDER survey is the most accurate, reliable and useful it can be in capturing global expenditure on neglected disease product R&D.
In 2014 we launched our redesigned G-FINDER survey tool. The survey tool was redeveloped to provide more robust and flexible IT infrastructure and processes. This has led to increased survey efficiency, as well as improved mechanisms for more reliable data collection and structures for data storage.
8. Financial reporting systems differ between organisations: how do you account for these differences?
We recognise that there will be differences in both financial year periods and accounting systems between organisations.
Financial year periods often do not match the calendar year and vary between organisations. For the purposes of the G-FINDER report, 'financial year 2017' refers to the financial year occurring predominantly in the 2017 calendar year (e.g. a financial year of April 1, 2017 - March 31, 2018 is considered as financial year 2017 for this survey).
9. How does G-FINDER ensure that currencies from different countries are translated accurately?
All figures in the eleventh G-FINDER report have been adjusted for inflation and are reported in 2017 US dollars (US$). All reported data was adjusted for inflation using country-specific consumer price index (CPI) figures from the Organisation for Economic Co-operation and Development (OECD) and the International Monetary Fund (IMF), and any data entered by survey participants in their local currency was converted to US$ based on the 2017 average annual exchange rate as reported by the IMF. Due to earlier reporting issues in Argentina, CPI data was not readily available from the OECD/IMF between 2014 and 2015. For those years only, spending was indexed using the inflation rate from the Argentinian National Institute of Statistics and Censuses.
10. The flow of funds is very complex in this field. How do you avoid double-counting?
We understand the complex nature of funding in this field, and the importance of avoiding double-counting, and have designed the survey with these issues in mind. The survey is designed so that we can trace the flow of funds through organisations with a high level of accuracy. An organisation may play two or more different roles in neglected disease R&D (for example as a funder AND product developer); therefore, before starting the survey, we question the organisation on the roles it carries out. We use their answers to determine which parts of the survey they will be asked to complete.
11. Who is conducting the survey?
12. Who is funding the survey?
13. Who has been asked to complete the survey?
G-FINDER aims to survey all key public, private and philanthropic organisations involved in neglected disease R&D. Although our primary focus is on funders, we also survey key research, intermediary and industry groups to allow us to better track funding flows. In its first year, the survey was sent to 551 funders, research intermediaries, Product Development Partnerships and industry entities in 43 countries. Today, the G-FINDER survey is sent to around 1,100 organisations in about 80 countries.
14. Why did the G-FINDER survey start collecting EID data in 2014?
The G-FINDER survey collected funding data on Ebola R&D investments in 2015 (FY2014) in response to the outbreak in West Africa in 2014. In 2016 data was collected on FY2015 investments in Ebola and a number of other African VHFs but this was analysed separately to the G-FINDER neglected diseases in order to provide a clear picture of global R&D investments in these two distinct areas. In 2017 and 2018, the G-FINDER survey collected data on investments in all priority EID pathogens (as identified in the WHO R&D Blueprint), which will be analysed in a separate report.
15. Why is EID data no longer available on this platform?
Policy Cures Research is working on a new platform, incorporating EID data, with improved functionality. For any EID data requests please contact us at email@example.com
16. Why did the G-FINDER survey collect reproductive health data for financial year 2013?
During the first six years of the survey, many survey recipients commented on the lack of reproductive health R&D data, leading us to collect this data as part of the financial year 2013 survey. As with the neglected disease survey, we hope that better information on reproductive health R&D funding will stimulate increased efficiency and investment into this area.
17. How did you decide which reproductive health areas to include in the financial year 2013 G-FINDER survey?
Areas for inclusion were determined through consultation with an international Expert Advisory Group (EAG), which included experts in reproductive health and reproductive health R&D from international non-governmental organisations, multilateral organisations and government funders.
Following EAG consultation, in its seventh year the G-FINDER survey also asked about reproductive health R&D targeting problems for which:
Developing world populations need products that are different from those in the developed world; AND
There is a market failure for those developing world products (i.e. there is an insufficient commercial market to attract R&D by private industry).
18. How were the reproductive health-specific funders and developers identified?
The members of the EAG provided a list of reproductive health R&D organisations to be surveyed; additionally, all organisations participating in the neglected disease survey were invited to complete the reproductive health survey.
19. Was reproductive health data collected in a separate survey or for a different survey period?
No. The reproductive health R&D funding information was collected through the same survey and for the same financial year as neglected disease R&D data.
20. Was the reproductive health data reported within the annual G-FINDER report?
21. Will new data on reproductive health R&D funding be available in the future?
Yes, Policy Cures Research will collect financial year 2018 funding data for reproductive health alongside our neglected disease survey in 2019. This data will be analysed and published separately.