by Theo Schall

I was recently asked to find out the number of research participants in the United States and around the world, as well as how much is spent on human health research. (The word “participant,” rather than the more traditional “subject,” is used to reflect respect for the role of volunteers in the research process.) As with many big questions about decentralized infrastructures, definitive answers were difficult to find.

Numbers of Participants

Estimating the number of participants here and around the world turned out to be a much greater challenge than estimating spending. I couldn’t find any figures on the number of research participants around the world, which is a potentially dangerous thing for scholars and policymakers not to know. Many countries have limited or ineffectively enforced ethical oversight, and the absence of good data on research participants in those places may make it more challenging to ensure appropriate protection.

How many participants are there in the United States? The industry-supported Center for Information & Study on Clinical Research Participation estimates that there were over 2.2 million participants in clinical trials in 2013. Although this may sound like a large number, in 2013, the population was 314 million. As a result, a majority of research sites have problems recruiting enough participants for their studies. The ongoing challenge of recruitment is one of the reasons that bioethicists and policymakers have become so interested in the virtues of a learning healthcare system. With ethical oversight, the era of Big Data in healthcare can revolutionize health research.

Spending on Research

Estimating the amount of research spending is tricky because only some studies fall under the oversight mechanisms of the government and academic institutions. The most recent exhaustive estimate that I could find is for the year 2012. Research!America estimated (pdf) total American medical and health research expenditures that year to be over $130 billion.

The effort to estimate global health research spending has been part of a larger conversation about just allocation of research dollars. A 2013 paper estimated the total global investment in health research and development to be roughly 240 billion (purchasing power parity-adjusted) dollars in 2009.

Maximizing Good from Research

While the reported years are different, you may notice that the United States is (roughly) responsible for half of the research spending in the world. This fact is reflected in global research priorities, which critics have long contended are out of sync with the global burden of disease. We have not invested our research dollars wisely; they disproportionately benefit people in developed countries and fail to address the needs of the global poor.

In 1990, the Commission on Health Research for Development found that only about 5% of the world’s health research focused on the health problems of low- and middle-income countries, where 93% of the world’s preventable deaths occurred. This imbalance between disease burden and resources has come to be called the “90/10 gap.” Just this February, the World Health Organization sent out a call for papers to inform its establishment of an international observatory that will monitor the global state of resource allocation for health research.

With some hard work, we can look forward to a future in which global research dollars do more for those who suffer unjustly under the burden of preventable disease, and where “research” itself transforms to include the clinical experiences of many more people here and around the world.

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