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PANLAR Expert Patients Program on Rheumatic Diseases

By : Estefanía Fajardo
Periodista científica de Global Rheumatology by PANLAR.



05 April, 2020

https://doi.org/10.46856/grp.24.e024

"Through the Juntos Group, PANLAR has been working on the development of the “Expert Patient in Self-Care for Rheumatic Diseases” program. This program aims to achieve better health outcomes and optimize self-management of rheumatic diseases."

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This project stems from a review of international programs developed by Stanford University (United Kingdom) and based on over 10 years of experience in Spain with the University of Patients. This type of program has numerous publications at an international level and has been identified as one of the successful strategies to address the complexity of chronic diseases and the crisis of sustainability of the health system. 

In this regard, Dr. Enrique Soriano, president of PANLAR, stated that: “We will have a unique program that will allow us to measure results and compare them between countries, to optimize this type of interventions and improve the quality of life of patients”.

To meet this goal, an advisory committee was set up composed of Juntos Group and an academic committee represented by specialists and leaders of patient organizations part of ASOPAN, all representing the different areas of the Pan American region. 

One of the main characteristics of this course is that it is based on a structured handbook which includes a description of the activities of each session, including content details and methodology to be employed. The course is structured in six sessions, a 2.5-hour class per week, taught by two trainers, a patient or leader of patient organizations and a health professional. 

For his part, Dr. Carlo V. Caballero, in charge of the coordination of the Juntos group of PANLAR, stated that “this program constitutes a historic event, where patients and health professionals will work together to enhance the competencies of patients and caregivers in the self-care of rheumatic diseases”.

We are currently in the phase of finalizing the trainers’ handbook, which was developed based on the needs of the region. Following this we will start with the pilot phase of the project, which includes three courses in three countries in the region, with the aim of making the necessary adjustments for their subsequent dissemination throughout the region.

For this reason, we called for applications during the month of September. A total of 25 candidates were presented by scientific societies and 38 by patient groups. 

The following candidates were chosen from the selection process: 

Patient organizations:

Argentina

  • María Cristina Jordán (Arthritis Federation - Federación Artritis Alianza Federal)
  • Stella Maris Gómez (Arthritis Civil Association - Asociación Civil Artritis)
  • Sandra Vilches (Lupus Foundation - Fundación Lupus Córdoba)

Panama

  • Beatriz Vergara Ortega (Arthritis Foundation - Fundación Artritis Panamá)
  • Dalila E. Suárez Medina (Arthritis Foundation - Fundación Artritis Panamá)
  • Tecla Odette Springer Day (Arthritis Foundation - Fundación Artritis Panamá)

Colombia

  • María Mercedes Rueda Gutiérrez (Fundaré Capítulo Bogotá)
  • Gina Ochoa Galeano (LICAR Foundation - Fundación LICAR, Bogotá)

Health Professionals

Argentina

  • Dr. Leandro Gabriel Ferreyra (Argentine Society of Rheumatology - Sociedad Argentina de Reumatología)
  • Dr. Olga Leal (Argentine Society of Rheumatology - Sociedad Argentina de Reumatología)
  • Dr. Dora Pereira (Argentine Society of Rheumatology - Sociedad Argentina de Reumatología)

Panama

  • Ilsa Moreno (Panamanian Society of Rheumatology - Sociedad Panameña de Reumatología)
  • Dr. Enrique Giraldo (Panamanian Society of Rheumatology - Sociedad Panameña de Reumatología)
  • Dr. Jorge Rodríguez (Panamanian Society of Rheumatology - Sociedad Panameña de Reumatología)

Colombia

  • Dr. Andrés Fernández (Colombian Association of Rheumatology - Asociación Colombiana de Reumatología)
  • Dr. José A. Salas (Colombian Association of Rheumatology - Asociación Colombiana de Reumatología)

Some countries questioned why their candidates where not selected in this first phase. It is important to reiterate that some of the applicants were not considered because their information was incomplete (no form attachment, resume, educational activities support, letter of commitment, etc.). PANLAR would like to highlight that this first stage of the program is only for a pilot. The objective is to involve all interested parties in subsequent stages and to expand the training program to as many countries as possible. PANLAR will maintain ongoing communication with interested countries, to plan follow-up and implementation strategies after the pilot phase.

The course “Trainer of trainers” will be held next Sunday 17 and Monday 18 November in Panama City.  After its completion, the trainees shall plough their knowledge back into their home countries to measure and evaluate the results.

Ms. Priscila Torres, president of ASOPAN, confirmed that “This training initiative will promote collaborative management between health professionals and patient leaders, in order to continue working together towards an active role for patients in the self-care of their health and in the management of all the tools they can acquire to do so”. PANLAR expresses its most sincere appreciation for all the support received throughout the process to the patient organizations and national medical societies, which joined together for this common purpose. 

PANLAR is convinced that this initiative means a real paradigm shift in the development of strategies that doctors and patients can build together.

 

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