MADRID, 14 (EUROPA PRESS)
The president of the Spanish Federation of Hemophilia (FEDHEMO), Daniel García, has demanded, together with the president of the Spanish Group of Cancer Patients (GEPAC), María Barragán, “a clear implementation” of the National Precision Medicine Plan, included within the Strategic Projects for Economic Recovery and Transformation (PERTE) for Vanguard Health.
This is how they have pronounced before the Health and Consumption Commission in the Congress of Deputies, to which they have presented the document ‘Map of access to innovation’, made by patient entities from various sectors.
Specifically, García has claimed the need for a “diagnostic improvement”. “Currently, there is a plethora of therapies directed at biomarkers, personalizing treatment for each patient, but this innovation in diagnostics is also necessary,” he claimed.
Likewise, the document also includes the need for greater territorial coordination. “It is necessary that a patient feels the same treatment, regardless of his postal code”, the president of FEDHEMO has requested, to claim the importance that “between Autonomous Communities speak and listen to each other”. In line, they also ask for this coordination between the different levels of care, as well as “between the social and the health”.
In relation to this, they also ask for a single health history and a single health card. “Currently there is interoperability between communities, but we patients know that this does not come to reality. For example, a patient on dialysis has problems moving within our country, “Garcia criticized.
Thus, in terms of the challenges included in the document, three proposals for improvement stand out. The first refers to the need for the resolutions of the Interterritorial Councils of the SNS to be “binding and mandatory to guarantee fairness, since, currently, these resolutions are sometimes simply programmatic declarations”, stated García.
Another proposal is the improvement of care in the Centers, Services and Reference Units (CSUR) of the National Health System (CSUR). “Sometimes, the Autonomous Communities act as a barrier to access the CSURs. For this reason, it is important that a modification be made, in order to become a network service”, points out García.
“We ask that there be centers in each Autonomous Community that can be a sentinel, a monitoring center, that allows the patient not to have to make a great pilgrimage,” urged the president of FEDHEMO. Lastly, he recalled the importance of the centers sharing information among themselves, as well as proposals for improvement and clinical information.
GREATER PARTICIPATION OF PATIENTS IN THE SNS
For her part, the president of the GEPAC has called for greater patient participation in health decisions. “It seems that there is a lot of talk about the patient, but we are pretending, we are here for the photos, but we have to be really there, with a voice and opinion and our criteria,” Barragán claimed.
“We have a lot to contribute from our experience. We are not going to replace the voice of specialists, but we can talk about what the disease means to us, how we want to live it, with more or less quality of life, and explain how a certain treatment or its administration affects us and, ultimately, how we want to experience the disease, because we experience it 24 hours a day”, pointed out the president of GEPAC.
He also stressed that patient associations are covering a very important part of the health network, but he regretted that this work “is not always recognized.” For this reason, he has insisted that, as long as this message “does not sink in” among political decision-makers, things will not change. “We need the support of the administrations, they should all take into account the role that patients have,” she reiterated.
To do this, he stressed the need to promote training and information processes for patients from the consultations themselves. “We need to return home with a document that is not the medical history, but something that we can really understand, a telephone number to call in case of doubt, and training,” Barragán claimed. “We have to invest in training patients,” he urged.
Likewise, another proposal from patient associations in this regard and which is also included in the document is the need for physical spaces in hospitals for these organizations, “so that the patients themselves would know us and be able to access”, Barragán detailed. “We cover services that are not covered by the public administration,” he described.
In addition, they have demanded a reduction in “administrative and bureaucratic obstacles, which are a tremendous complication and complicate transit through the health system.” “We ask for legislation so that the participation of patient associations is really effective, because now there is no legislation so that we are integrated into the system”, the president of GEPAC reiterated.
In this regard, he recalled that, as patients, it would be beneficial for them to be present throughout the research process, from the design of clinical trials. “It is also necessary to establish training programs for professionals, so that health professionals know that they have patient associations that they can count on to carry out their work,” Barragán concluded.