Does research respond to the real health needs of the population?
What is one problem that is common to the very diverse health systems in countries as different as Spain, the United States, Germany, Chile, Brazil and Colombia? All of them are facing immense difficulties in ensuring access to medicines.
If I had to illustrate the problem of access to medicines, I would start by drawing a triangle—the three vertices representing development and production (scientists and industry), regulation (the state), and civil society. In the centre of the triangle I would place the word “access”. This simple diagram would serve to illustrate part of the complexity of this issue, starting with identifying the many actors involved. This complexity generates innumerable questions about how the current R&D model works, how access can be measured, what the principal barriers to access are, and possible solutions to the problems.
The state and civil society organisations have been actively involved in the debate about access to medicines for some time and they continue to play an important role. The scientific community has, to a lesser extent, also participated. When I use the term “scientific community”, I am referring to the first of the three vertices on my triangle since development and production depend on the basic clinical and epidemiological research carried out by scientists.
If we want to effect real change (...), it is essential that of all the actors should take part in the debate
For this reason, if we want to effect real change that will enable us to address the problem of access to medicines, it is essential that of all the actors should take part in the debate. As ISGlobal is involved in both research and knowledge translation in the area of global health, we set ourselves the following challenge: to stimulate reflection on this issue and to foment conversation between the different arms of our organisation, including our clinical researchers. Over the past ten months, we have implemented a project we call Science for Patients, which was made possible by the support of the Open Society Foundations.
What are our lines of investigation? Does research respond to the real health needs of the population? Are the new treatments and medical technologies arising from the research which we and other scientists carry out actually accessible to patients? Who is excluded from the benefits arising from this research? How can we encourage the active participation and involvement of our teams and colleagues in this debate?
Our aim was to find out where we are now, where we are going, and what motivates us
These were some of the questions we decided to investigate. We did this by asking people to respond to a detailed online questionnaire aimed at unifying the language of diverse sections and departments that do not generally interact. Our aim was to find out where we are now, where we are going, and what motivates us. The main limitation of the exercise was the low level of participation.
After the data had been collected and analysed, we organised a two-day seminar with several experts in the subject to share the results and expand the discussion. Three major issues recurred over and over again and were present throughout the project:
1. The lack of transparency of the current R&D model.
2. Price as one of the principal barriers to access to medicines.
3. The failure of research, in some cases, to respond to the health needs of the population.
The current R&D model is dysfunctional in that it often fails to produce affordable medicines needed to meet the health needs of the population
Almost all of us agreed that there is a problem with access to medicines, that the problem is complex, and that the current R&D model is dysfunctional in that it often fails to produce affordable medicines needed to meet the health needs of the population.
We also agreed that research is driven by both economic and symbolic interests in that those of us involved in research not only seek funding but also want to publish in high impact international journals and want our work to be recognised.
However, there was less consensus when the respondents answered more direct questions, such as “Do you feel that your agenda is influenced by external incentives?” The most frequent response to that question was “My agenda is not, but the agenda of other people is.” At this point, the project gained even greater importance because, clearly, we are able to recognise the problem in others but not in ourselves, so that we tend to see the issue as a problem caused by other people, making it difficult for us to get deeply involved ourselves.
Research solving real world health problems will undoubtedly contribute to a more just society for all and make our scientific work a tool for social transformation
This observation highlights the need to take the process a step further and develop a roadmap designed not only to address the issues on which there is consensus but also to involve all the actors in this difficult task, especially the scientific community. Because research that can translate results into practices capable of solving real world health problems affecting the population will undoubtedly contribute to a more just society for all and make our scientific work a tool for social transformation.
We will need everyone’s commitment (...). That is the only way to ensure our science is really undertaken for the good of patients
The issue is highly complex, which is why I am convinced that we need to set genuine concrete objectives that will enable us to take small but decisive steps to move beyond the current difficult situation. We are now starting a second phase of the project, which we hope will serve to dispel our despondency over the low participation in the discussion to date. If we are to find real solutions to this problem, we will need everyone’s commitment and everyone’s involvement in the debate. That is the only way to ensure that science is for patients.