¿Cómo hacer que la ciencia sea para los pacientes?

What Can We Do to Make Sure that Science Is for Patients?

29.5.2019
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Access to medicines is a key issue in global health. However, ensuring access implies not only the availability of new technologies in the marketplace, it is also essential that these should be affordable and used in a rational way.

With different nuances depending on their political health systems, all countries, in one way or another, face difficulties in assuring access to medicines.  And I emphasise the word “political” because when we talk about public policy, in addition to the scientific knowledgethat allows us to design strategies based on evidence, there are always important government decisions.

Access to medicines is a key issue in global health

For decades, we have been engaged in an ongoing debate about who are the "bad guys" in the health sector, about who is "to blame" for restricted access to medicines and who is "responsible" for the persistence of the problem. And it can sometimes be extremely difficult to move forward in this debate because each one of us—the actors involved—have our own deeply held convictions and narratives, which can make it difficult, or even impossible, for us to listen to the position of other stakeholders.

It would be unwise to approach this very complex problem solely as a health care issue. As I said, it is also a political, economic and scientific matter. In the Science for Patients project we decided to focus on the scientific dimension. During the first year of the project, we talked to biomedical researchers. In the second year, we took a step further by expanding the interviewee profile. We conducted 30 semi-structured interviews with the various agents involved in the different stages of medicines development: research and development, production, and the introduction of the product on the market. In other words, we talked to regulators, funders, manufacturers, and researchers, among others.

In the 'Science for Patients' project, we conducted interviews with the various agents involved in the different stages of medicines development

Based on the information gathered, our preliminary conclusion is that the pharmaceutical R&D model is currently at a crossroads, and that immediate responses are needed:

  • Lack of transparency. Not all the information that should be made available is being disclosed (information related to the research and development phases). We do not have enough information about the value chain used to justify the very high prices charged for many new products.
  • The state invests, but it does not benefit from its investment. The private pharmaceutical sector takes advantage of public investment in new molecules and the state loses control over products created as a result of its investment.
  • The private sector spends money on medicines people do not need. Private R&D investment tends to focus on certain therapeutic areas because they represent high profitability for the pharmaceutical companies; however, this research does not address the real health needs of the population.
  • The sector requires more regulation. The state must strengthen its regulatory function in the sector, both technical and economic.

Preliminary conclusions of the 'Science for patients' project

That is a brief overview of the current situation as it stands. What are the possibilities of modifying the current R&D model? We have to change what we are doing if we want to achieve different results. We are still analysing the valuable information we have gathered from the interviews and next June we will hold a workshop to collectively come to conclusions that will provide a basis for reflecting on what could happen in the next stage.

We must learn from experience and analyse cases in which alternative R&D models were used and achieved better results. We need to improve the incentives that drive R&D and promote the participation and involvement of as many actors as possible.

Recognizing that we are part of the problem is the starting point. Deciding the following steps, defining real goals, and coming up with ways to reach them is the next step.

Scientific knowledge should be a tool for social transformation. We have to translate the results of our research into practices that enable us to tackle the real health problems of the population and help us to build a more just and democratic society in multiple spheres: political, social, economic and sanitary.

Scientific knowledge should be a tool for social transformation. We have to translate the results of our research into practices that enable us to tackle the real health problems of the population

This is the path we are taking, and I am convinced that it is the best way to achieve our goal: science for patients.