What does “responsible search” mean? How can the participation of patients and other stakeholders in its design and management be maximized? In recent years, there has been a boom in proposals to bring scientific research, particularly in the biomedical and clinical fields, closer to people interested in a particular condition or disease. But, apart from the public’s stated intentions of more openness and dissemination of results, a real step forward has been taken with European multifactorial projectwhere the Italian Multiple Sclerosis Foundation (FISM), together with other partners, imagined how to make a real paradigm shift through extended participation in the research.
We spoke about it with Paula Zarate, director of scientific research at the International Monetary Fund and first author of the study The MULTI-ACT model: The way forward for participatory and proactive governance in research and health carePosted in February on Health Research Policy and Regulations.
There is often talk of involving patients not only in treatment but also in research. But when we go into the concrete, often only words and good intentions remain. What do you offer with your MULTI-ACT?
In fact, it is not easy: we are talking about distant worlds even if they are connected, separated as they are due to a lack of scientific knowledge and competence. But this should not prevent a dialogue between patients and researchers about conditions and diseases in which the people involved can offer perspectives that complement and sometimes revolutionize the view and hypotheses of the researchers’ work. Consider, for example, how important the practice of systematic and controlled reporting is in many areas of medicine, not only about symptoms but also about the patient’s experience in their particular case. These are so-called self-reported measures, or Patient reported resultsMaking patient participation in research entirely scientific, to the point that the same basic assumptions of a clinical study can be changed by adhering to these measures.
For example, in the field of multiple sclerosis, the experience of pain and sensations felt in disease progression or in the use of drugs are aspects that can be combined with criteria that must be considered, along with the physical and biochemical materials usually considered in the study design . But there is one more thing that I would dare say a revolutionary aspect of this post.
If we do not limit ourselves to the more accurate and systematic listening of the experiences of the patient and those who are generally involved in the experiment, but instead make sure that these people participate even before the start of the experiment, let’s say who at the beginning of the research project, it will be possible to design a management of the research itself that will be more Much ability to respond to everyone’s needs, and fruitful in terms of scientific and clinical effects. However, to this end, it is necessary to modify the governance criteria in research management, in agreement with the patient and after forming items to assess the multidimensional effects of patient involvement.
What is your association doing concretely to move in this direction?
The third sector already has in its DNA a readiness for participatory management, starting with the fact that decisions about choices, projects and actions to be taken are made, as happens in the Italian MS Society, by the National Assembly. Specifically for research projects, as the IMF, we currently have eight people with multiple sclerosis who pass on their experience with the disease to national and European research projects, with excellent results.
What you say to me seems to me an important example of scientific citizenship, and rejection in the field of biomedicine. What do you think is the future of responsible and participatory research?
Through the MultiAct Project and with this latest publication, we have begun to build a governance method for this new type of research, which cannot be based on goodwill and volunteerism but must be rooted in scientifically sound practice, as well as to measure its outcomes in terms of impact on the patient community – and beyond. For the so-called “science subordinate And the With The patient”, who was crucial to the history of our association, had strong scientific credibility, and it was essential that the scientific community recognized the value of this new paradigm. It can be said that we, as an association, are already using this approach in the national and European projects in which we participate. Teaching also: on Example, the European project Alameda, of which we are partners, has already adopted the MULTI-ACT model. They did the same MS . Progressive Alliance and the Patient Report Results for Multiple Sclerosis Initiative. In short, we are cultivating in organizations that fund scientific research a new ability to manage research and care in a participatory manner, in order to make a real impact on people’s health, well-being and their rights to be best treated. possible solution method.
The COVID-19 pandemic has led to an increased exposure of the population to scientific research, but also a residual mistrust of it, at least in certain sectors of the population. What can be done to overcome this impasse and take advantage of this moment to strengthen the relationship between science and society?
The pandemic has taught us the duty to inform and educate about the scientific method, so that the involvement of the population is not faith-based and formal but conscious, which is real. Empowerment, or if you prefer full scientific citizenship. Therefore, it is the duty of every researcher to learn to communicate what they do – things we have always insisted on at AISM – and to prepare the tools and skills to get patients and civil society representatives on board with research projects. Only the informed and participating citizen will not be afraid and will trust the results of the research. In science, every result that is achieved is valid evidence until proven otherwise; There are no absolute and immutable facts, because research is constantly being built. So scientific communication must also include an understanding of the progressive nature of research and the value of uncertainty, which should not be hidden but rather made clear.
Take the latter for example study This indicates an unquestionable relationship between exposure to the Epstein-Barr virus and the likelihood of developing multiple sclerosis. Epidemiological data reveal the robustness of this association which, however, is very little specific, given that we almost all harbor this virus but only a minority get sick. because? Because we are faced with a multifactorial disease, in which possible genetic predisposition and other environmental factors are also factored in. This awareness leads us to appreciate this latest finding, which provides important information about the disease, and to be positive about the possible development of a vaccine in the future, but it also makes us realize that – as with Covid-19 – we should not rely on a magic wand for a single intervention, but on an increasingly personalized and complex preventive and curative approach that works on several fronts.
Returning to the “dream” of fully participating in science, what is your ambition today?
My personal dream is to build a profile Participation Coordination Teama large group in which the participation of people with MS is not only linked to individual research projects, as we said before, but becomes an associative reality in which people from all Italian lands participate in bringing their MS experience into the disease research agenda. An open lane must hardly become a highway: A road that has just been opened with great commitment must become a highway. If the research and health ecosystem is able to listen well to all the actors involved, and if we are able to share a participatory agenda of the pathways that research should take, then we can reach research and health management that can be not only curative, but can be curative. Also be preventive and proactive about people’s problems.
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