What role do patient associations play?

| Patient associations or patient organizations are groups of people who have in common the fact of suffering from a specific disease

and who seek, in contact with others who have the same health problem, to obtain mutual support, a better knowledge of the disease suffered and a close collaboration with the doctors and treating centers, as well as to carry out an outreach task on said disease to the rest of the population.

Patient associations in Spain

In Spain, some patient associations were created between the 1960s and 1970s, but it was not until the 1980s that the patient association movement emerged. A significant number of organizations what do you expect defend the interests of these groups of patients and families, with the premise that the union of people affected with similar pathologies is essential to assert their rights and improve their quality of life.

The associations of patients are regulated in Spain by the same regulations under which any other group or association is governed. These associations act at the local, county, provincial, regional and national levels, and may be grouped under a federation of associations. There are associations of patients with more common diseases, such as diabetes, or different types of cancer, as well as other more minority ones, who do a great job of supporting both patients and their families, such as arthritis rheumatoid or myasthenia gravis.

At the Spanish level, the associations of patients develop their activities through various lines of action:

• Information to patients: patients need to have information about their disease in order to understand it and deal with it with knowledge. Health personnel sometimes provide information that can be difficult to process or that raises doubts. The associations of patients have verified and accredited information from health professionals and patients who have already gone through that first encounter with the disease and therefore can accompany those who have recently been diagnosed with a disease in the first person. Such information is not only accessible and beneficial for the sick, but also for relatives and the rest of the population.
• Participation in clinical decision-making: nowadays patients more frequently request to be an active part in making diagnostic and therapeutic decisions about their disease. Associations can play a role as patient informants so that the patient has all the data and tools it may need to make, in a consensual way with the doctor, the best decisions about their health.
• Improvement of the relationship between doctor and patients: associations can help not only the patient but also the health personnel to be able to establish a dialogue about the disease based on mutual trust and knowledge.
• Access to care: Patient organizations play an essential role in improving the quality and degree of access to healthcare. Sometimes a disease can be approached by different professions that complement each other (doctors, psychologists, specialized nurses, physiotherapists, social workers) and associations can be a good place for a patient to receive all the information about these complementary approaches, their advantages and you can more easily contact them through patient associations. Currently, for example, scientific advances and the development of it make possible in some cases prenatal diagnosis and family planning in certain hereditary diseases.
• Defense of rights and health policies: the involvement of people who are part of the associations of a disease, whether they are patients or not, is essential to be able to create participatory mechanisms that allow them to be part of the decision-making of health policies that affect directly or indirectly to the disease. In this way, giving a voice to patients, family members and treating professionals through these associations, effective and efficient changes can be achieved to improve the quality of life of these people.

Patient associations therefore play a very useful role so that the patient and their relatives can cope with a disease in the best possible way, supported by people who know this problem first-hand.