Patient associations as promoters of people-centered treatment in Latin America

PREAMBLE

Nobody knows the effects of a health condition better than the patient, their family, and caregiver. That is why it should not surprise us that the united will of the representatives of these groups results in an effective and positive tool to promote important changes regarding health. There are hundreds of patient associations worldwide that have gathered and represent a variety of conditions. What they all have in common is that they help patients receive the services their condition deserves, provide visibility to these conditions and the available treatments, as well as promote positive changes in their communities with regard to gaining access to public health.

POINT OF DEPARTURE AND ORIGIN OF THIS PUBLICATION

REFASAL (Reunión para Fortalecer el Acceso a la Salud en América Latina [Meeting to Strengthen Access to Health in Latin America]) originated in November 2016 with the objective of promoting the role of patient associations in the advancement of patient- and community-focused health systems in the Latin American region. The timing is particularly relevant, as it takes advantage of the advances in innovation and technology that are currently changing the way health services are communicated and accessed. This important meeting brought together under one roof a representative sample of several of the leading patient associations in Latin America that work to sustainably improve access and health outcomes for their patients through innovative advocacy efforts aimed at this sector. Since 2016, REFASAL has proposed strengthening patient associations and empowering their representatives to support the sustainable development of health systems focused on people, patients and their communities. “Patient associations as promoters of people-centered care in Latin America” is a collaborative and explanatory document, developed from the reference framework established during REFASAL. This publication is based on information gathered through interviews with leaders of eighteen (18) patients’ associations from Central and South America participating in REFASAL. The intention is that it be a useful and vitally important tool for stakeholders seeking to understand the current and potential role and impact of patient associations in the progress towards patient-centered care, and also to present some best practices that may serve as an example for other organizations in the region to evaluate and apply similar strategies in their respective countries.