"Money for medical research not used very effectively"
Professor of Clinical Epidemiology Yolanda van der Graaf says goodbye to the Julius Center
Not enough money goes into testing medical treatments in the clinic, says professor of clinical epidemiology Yolanda van der Graaf. Independent research funds are spent mostly on laboratory tests with cells, proteins and DNA. "It will take at least 20 years before patients can benefit from this,if they benefit at all, as no more than 20 percent of clinical progress originates in the lab."
In her farewell speech (in Dutch), Yolanda van der Graaf refers to a study from 2017 on the effectiveness of cancer medicines that had been approved by the European Medicines Agency. Yolanda: "For most of the 48 cancer medicines introduced on the market between 2009 and 2013, no evidence was found that they prolonged life or improved the quality of life." It is one of the examples she gave to underline the importance of independent clinical research: to take ineffective medication off the market. Yolanda: "Clinical research is expensive and takes a long time, but skipping this step will have a long-lasting effect. And once medicines have been approved, they are rarely taken off the market."
This also applies to medical devices such as implants. In the Netherlands, some 1 million implants are placed every year. Yolanda: “Have all these implants been tested to see if they will make you better?" She provides the answer herself: "Some of them have." She continues: “You have probably heard about the pelvic mesh that is used for prolapse repair but that sometimes causes unbearable pain and tissue adhesion, as a result of which removal is impossible. This would certainly not have happened if the profession had decided to wait for decent patient-related research. But who would have to finance this, apart from the firm producing the mesh? The firm didn't see the need, as they were not required to do so by law. But doctors remain responsible for their actions and must be able to assume that devices are properly tested."
But that is not a matter of course: even if medicines or medical devices are allowed onto the market, this does not mean there is sufficient knowledge to use them safely and effectively, now and in the longer term. This requires clinical, or patient-related, research. According to Yolanda, clinical research has made a major contribution to the successes in medicine, for instance to the increased life expectancy in the Netherlands.
Despite that significant contribution, the majority of research funds are earmarked for fundamental research – laboratory tests with cells, proteins and DNA. "When you realize that no more than about 20 percent of medical progress for patients originated in the lab, you are making a serious mistake when you spend independent research funds almost exclusively on fundamental research."
Yet that is what happens in practice. The Dutch Journal of Medicine, of which Yolanda is editor-in-chief, recently studied how the NWO (the Netherlands Organisation for Scientific Research) spends the funds they receive from the Vernieuwingsimpuls, an incentive for innovative research. This money is intended for talented and creative researchers to allow them to perform their own research. In 2005, 2010 and 2015, most of these prestigious incentives were given to researchers who had submitted a proposal for fundamental scientific research (see table).
"All too often, funding bodies are still living in the last century and believe the world begins with fundamental research," Yolanda contends. "Biomedical research should be for the benefit of the end-users of that knowledge: patients and practitioners. In today's situation, traditional scholars determine the status of scientific research and the rules of many funding bodies.”
The so-called impact factor plays a key role in this. Researchers publish in scientific journals. The impact factor of a journal is calculated by dividing the number of times that journal is quoted every year by the number of annual articles. The more quotes, the higher the journal's impact factor and the larger the prestige of the researchers who publish in it. Yolanda: "Publishing in journals that have a high impact factor has become an end in itself. There is no relationship with clinical significance, with the question of whether it benefits the patient.”
In 2014, the Lancet published a series about research waste. Yolanda: "They mentioned estimates of 85 percent, and this in no way referred to research that didn't deliver on expectations, as this type of research is necessary to make progress. They really referred to research that was known in advance to be unnecessary. There are a lot of potential causes of research waste, but one of the most important ones is answering questions that do not have priority.
Yolanda believes that practitioners and patients should have a greater say in the investigation question, the subject studied by scientists. She describes the argument that only experts can judge this as "nonsense". "Allowing yourself to be led only by experts and stakeholders would result in an unfair healthcare system, as there is no lobby at all for large groups of patients. We should be much more on the ball recognizing and identifying interests, including those of scientists. That way, we can prevent a situation in which there is a lot of one type of research – fundamental research – and very little of the other type – clinical research. And the fact that we really need the pharmaceutical industry does not discharge us from our obligation to perform independent research."