Patient associations as stakeholders: a valuable partner for facilitating access to therapy

Abstract

One set of important objectives of patient associations is to provide education, support, and advice to those affected by cardiac arrhythmias to ensure that they have access to appropriate diagnosis and treatment. In this perspective it is essential to establish a balanced partnership between patients and clinicians in order to facilitate the work of the patient association. Such associations must work under the guidance of and in consultation with a medical advisory committee for the production of appropriate and validated educational and awareness materials. Patient association coalitions represent and promote partnerships between professionals, patients, government, organizations, and industry. The power of an alliance works in bringing pressure to bear, in lobbying on behalf of specific patient groups. This type of coalition may also act as a depository for relevant databases and contact information relating to all the members who participate in the coalition, and facilitate rapid and complete communication between all interested parties. When fully developed it may also serve to provide current information on the diagnosis, treatment, and management of cardiac arrhythmias to patients, paramedical staff, and physicians. The Arrhythmia Alliance, initially established in the UK but now developing on an international basis sources, collates, and reflects views and data collected from members, bringing beneficial perspectives to the fore to ensure that change is led by the people and for the people.