What is the G-FINDER 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 into neglected disease R&D. We track global neglected disease investment annually, and provide the results to funders 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 duplications. Information was often out of date, patchy, unreliable or was not comparable across surveys due to different accounting and reporting methodologies.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 39 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 Research to conduct the last nine 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 are needed, if any. We therefore used 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 only being accepted as 'neglected' for the purposes of the G-FINDER survey 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 no commercial market to stimulate R&D by industry.
Where there was disagreement between experts, their decisions were supplemented by advice from further disease and R&D experts.
Over the past nine 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 response to feedback, from year two (financial year 2008) diagnostics for lymphatic filariasis were included, and we broadened the typhoid and paratyphoid category to include other Salmonella infections, specifically non-typhoidal Salmonella enterica (NTS) and multiple Salmonella infections.
In our seventh year (financial year 2013), we established a new Advisory Committee to enable a thorough review of the scope of G-FINDER. As a result, the list of neglected diseases expanded to include cryptococcal meningitis, hepatitis C genotype 4 and leptospirosis. The review also identified that there had been increased commercialisation of dengue vaccine R&D, with many pharmaceutical firms conducting commercial dengue vaccine programmes. As a result, dengue vaccine R&D was removed from the scope of the survey, and data on these investments excluded retrospectively. Other dengue products continue to be included.
In response to the 2014 West African Ebola outbreak, investments in Ebola R&D were included in the G-FINDER survey scope for the first time in year eight (financial year 2014). The hepatitis C category was also broadened to include genotypes 5 and 6.
In 2015, the survey introduced the new grouped disease category of African viral haemorrhagic fevers (VHFs). In addition to Ebola, which was already part of the survey, this new category allowed respondents to report R&D funding for Marburg and Other and/or multiple African VHFs. The scope for Streptococcus Pneumoniae vaccines was also revised to better reflect current approaches to developing pneumococcal vaccines for low-resource settings
6. 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 feasible, reliable and useful it can be in terms of 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 structure for data storage.
7. 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 2015' will refer to the financial year occurring predominantly in the 2015 calendar year (e.g. a financial year of April 1, 2015 - March 31, 2016 will be considered as financial year 2015 for this survey).
8. How does G-FINDER ensure that currencies from different countries are translated accurately?
All figures in the year nine G-FINDER report have been adjusted for inflation and are reported in 2015 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 2015 average annual exchange rate as reported by the IMF. Due to the currency situation in Argentina in 2014, CPI data for Argentina was not available from either the OECD or IMF. Instead, the inflation rate used for Argentinian pesos was taken from Argentinian National Institute of Statistics and Censuses (INDEC). In 2015, the Argentinian CPI figure was taken from the IMF.
9. 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 one 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 what information we subsequently ask from them.
10. Who is conducting the survey?
11. Who is funding the survey?
12. 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 nearly 900 organisations in 55 countries.
13. 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, so data was collected for financial year 2013. 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.
14. 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 G-FINDER has also included reproductive health R&D that satisfies the two criteria below:
Developing world populations need products that are different from those in the developed world; AND
For those developing world products there is a market failure (i.e. there is an insufficient commercial market to attract R&D by private industry).
15. 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.
16. 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.