What role should associations play in recruiting patients for participation in clinical trials? How can the doctor-patient relationship contribute to a better use of the medication? What problems does the patient suffer from the lack of therapeutic compliance and how can this be improved? These questions, and many others, were raised on Tuesday, December 13th and were posed by patients, health professionals, public administrations and the pharmaceutical industry, during the IV Jornada Somos Pacientes, organized in Madrid by the Farmaindustria Foundation.
This meeting, held in the auditorium of the College of Architects of Madrid, wanted to provoke dialogue, not so much about the effect that the medicine has on the patient, but more in terms of what role the patient can, and should, play throughout the life of the drug; From the beginning, when it is necessary to decide what to investigate and how to do it in order to develop new drugs, up until the end, contributing, alongside the rest of health agents, to ensure that the drugs are used properly. Not forgetting, of course, the moment of making the decision on how to approach the disease, which is the focal point of the doctor-patient relationship, which has evolving so much in recent times.
“The patient is our reason for being,” said the president of Farmaindustria, Jesus Acebillo, at the opening of the ceremony. They are the final recipient of our work, focusing both on R & D of medicines that provide new solutions to diseases and in collaboration with authorities and health professionals, so that these new drugs can reach those who need them and use them in an appropriate way.”
In this regard, he stressed that the pharmaceutical industry considers “patients, family and caregivers, through their associations and organizations, as a valuable partner within the health sector.” “It is crucial that the pharmaceutical industry, like other agents in the industry,” he added, “develop the ability to listen to representatives of the sick as a first step to really place the patient at the center of the system.” And he has expressed his commitment to “collaborate in all those initiatives in which we can contribute our bit to make their voice heard.”
The objective of the day, which through three roundtable discussions, sought to publicise the suggestions, needs and concerns of patients. The first of these focused on analyzing the patient’s participation in biomedical R & D. With the participation of Alfonso Aguarón, project manager of Myeloma Patients Europe; César Hernández, Head of the Department of Medicines for Human Use of the Spanish Agency of Medicines and Sanitary Products (AEMPS); Gonzalo Pizarro, a cardiologist and researcher at the National Center for Cardiac Research (CNIC), and Yolanda Martínez, Head of Clinic Operations at BMS, the debate has highlighted the need and convenience for patients to participate in the entire process of the development of new drugs, from the detection of therapeutic needs not covered, up until the design and implementation of clinical trials.
Later, Toñy Gimón, Vice President of the Platform of Patient Organizations and former President of the Spanish Federation of Breast Cancer (FECMA), and Alberto López, primary care physician and President of the Madrid Society of Family and Community Medicine (Somamfyc), talked about the Doctor-Patient relationship, with the moderation of Emilio de Benito, a journalist specialized in health and President of the National Association of Health Informers (ANIS). In the conversation some issues emerged such as, the role that the patient should assume in determining and choosing their treatment, or the influence of new technologies and support in this relationship.
Lastly, the talk on adherence to treatment was attended by, Santiago Alfonso, Director of Action Psoriasis and Vice President of the Spanish Forum of Patients; Lola Murillo, Vice President of the Spanish Society of Community Pharmacy (Sefac); Antonio Fernández-Pro, President of the Spanish Society of General Medicine (SEMG), and Maria Martín Díez de Baldeón, Health Minister of La Rioja. They all analyzed the problems generated by the patient’s inadequate use of the drug, especially the lack of therapeutic compliance, and the possible solutions that can be presented to address this phenomenon from the perspective of all agents within the health sector.
The IV Jornada Somos Patientes was held in the auditorium of the College of Architects of Madrid, with representatives of associations of patients and people with disabilities, as well as professional groups, health administrations and pharmaceutical companies, and under the chairmanship of the Secretary General for Health and Consumer Affairs, Javier Castrodeza, who closed the meeting.
Somos Pacientes (www.somospacientes.com) is an initiative launched to generate an online community of associations of patients and people with disabilities, and alerady has more than 1,650 entities, which offers a shared space of information, participation, training, services and collaborative work to all these organizations.