«From the research field, we have realized that the patient must be part of the agents involved from the beginning in research projects. It is desirable for the patient to contribute their experience and actively collaborate in health research projects,» expressed during the II Conversing with Patients Conference, organized by the European University Foundation.
Padilla has emphasized that these processes cannot be carried out «behind the backs of the people who will later receive» the treatments, so he has asserted that the patient must «always be at the center.»
On the other hand, the university’s rector, Elena Gazapo, has highlighted the «importance» of improving healthcare for patients, especially through «active listening and constant support in research within the health area.»
Numerous experts, researchers, and patient association representatives have detailed the role that patients play in transforming science, delving into ways to progress towards a more «inclusive» and people-centered research.
«Whenever research is conducted, the patient must be at the ethical center by providing them with adequate information about the studies and clinical trials to which they are voluntarily subjected,» stated the professor and researcher at the European University José Miguel Biscaia, who has addressed the ethical and moral considerations regarding the collaboration of patients and the general public in health research.
The lawyer and Political Incidence and Rights Defense technician of the Patient Organizations Platform (POP), Paula Echevarría, the deputy director and head of efficient functioning and strategy area of FEDER, María Tomé, the research project manager at the Spanish Association Against Cancer (AECC), Vanesa Abón, and the vice president of CERMI Madrid and president of Aspaym Nacional, Mayte Gallego, have addressed the barriers that exist for the active involvement of patients in these processes.
Regarding this role and the contribution of experience «beyond being mere study subjects,» the president of the Spanish Association of ASMD Patients, Daniel de Vicente, the vice president of the Spanish Association of Metastatic Breast Cancer, Leyre Contreras, the type 1 diabetes patient and subject of studies in research projects Elena Villa, and the president of Predif Málaga, member of the board of AEPMI and member of the Permanent Commission of the Provincial Disability Council of Málaga, Nerea González, have spoken.
Finally, the director of the Carlos III Health Institute, Marina Pollán, the president of Psoriasis en Red and head of Communication and Project Development at AELCLÉS, Celia Marín, the Clinical Trials expert Yaiza Gimeno, and the oncologist at the Gregorio Marañón General University Hospital and member of the European Society for Medical Oncology (ESMO), Isabel Echavarría, have described current examples of best practices that highlight the importance of integrating the patient’s voice throughout the process.