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First-person testimonies participate in working group to improve communication of mental health research findings

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First-person testimonies participate in working group to improve communication of mental health research findings

  • They will help to design a model results report, which is given to each person who participates in a study with the results of the tests that have been carried out on them.
  • It is important to include the patient’s perspective in scientific studies, as this allows to focus the research on findings that respond to their real needs.
Picture of one of the meetings of the working group.

Reus, 14 November 2024. One in four people will suffer a mental disorder in their lifetime, according to the World Health Organisation (WHO). In the Camp de Tarragona health region, the professionals at the Hospital Universitari Institut Pere Mata attend to more than 13,600 people with psychiatric diagnoses at its centres every year (including children, young people and adults). These data show that mental health has become a major issue in our society and that it is urgent to address the diversity of realities that derive from it. One of them is the improvement of treatments and diagnoses, thanks, to a large extent, to scientific advances in this field.

In this sense, researchers from the Research Group on Genetics and Environment in Psychiatry (GAP) of the Pere Virgili Institute for Health Research (IISPV) and the Pere Mata University Hospital have set up a working group in which patients and relatives participate, so that the latter can help to improve the reports they are given with the evaluation of the tests they are given when they participate in a study.

‘Some of the studies we carry out envisage the possibility that we could incorporate what is called an outcome report, through which we give feedback to the people we have tested on the results of the tests. It would therefore be a matter of these participants helping us to make these reports more comprehensible and attractive, according to what they consider, since, at the end of the day, they are the main stakeholders; improving their health and quality of life is the reason why we do research,’ explains Dr. Elisabet Vilella, head of the GAP research group and deputy director of the IISPV.

Another of the functions of the participation of patients with a mental health diagnosis and their families in this working group is to help the GAP research group to design the programme of open days that will take place in spring 2025 and which will open the facilities of the Hospital Universitari Institut Pere Mata to the public. The aim of the activity is that all those interested can learn about the latest advances in mental health that are being carried out (specifically, the projects that will be presented have received funding from the Fundació la Marató). Those who attend will also be able to speak directly to the researchers who are making these studies possible, and ask them any questions they may have.

This initiative is part of what is known as Citizen Science, which aims to involve citizens in scientific studies and projects, so that research and the findings that make it possible can respond to people’s real needs. It is an innovative approach that will allow science to move towards a more global and inclusive approach.

Below, we share first-person testimonials from members of this working group. The aim of the working group is to improve the communication of research results on this type of disease:

  • Lourdes Martorell (researcher): ‘The participation of citizens in research processes is fundamental to ensure that their perspective on mental health is incorporated, allowing us to identify aspects that may not be contemplated by researchers’.
  • Vanessa Sanchez-Gistau (researcher): ‘It is essential to be able to know first-hand which aspects are of most concern to those affected and their families, which do not always coincide with those of the researchers’.
  • Gerard Muntané (researcher): ‘It is essential to give a voice to people with psychiatric diagnoses, as they are the final recipients of any progress and must be empowered by actively participating in all stages. Citizen collaboration allows researchers to direct research towards more practical results, thus responding to the real needs of the community’.
  • Albert Hill (first-person testimony): ‘It has a key and increasingly recognised role. Its contribution to research ensures more relevant and actionable results in the reality of everyday life in community settings. In terms of stigma reduction, it helps to reinforce the idea that people living with mental health disorders are an active part of the solution. So it is good that we are learning from each other and moving together in the same direction to keep moving forward.
  • Nila Lopez (mental health activist): ‘It is very valuable that people with psychiatric diagnoses work together with researchers. There are sensitive and/or affected people who have acquired knowledge and experiences throughout their lives in the field of mental health that allow them to contribute a different and complementary point of view to that of the researchers, which can be enriching at specific moments in the research’.

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