Grupo Juntos Philosophy

 

Patients shall be included in all the activities of the organization. Nothing about the patient without the Patient.

The doctor-patient relationship has become very complex. Appropriate information from reliable sources is required. Patient organizations are an ideal partner to interact and share valuable information with other patients and healthcare professionals. Patients, especially those who belong to associations, and physicians have particular expertise that complement each other. We must find joint spaces to work towards common goals.

Our healthcare systems have developed under the premise that considered the treatment of acute conditions.  Epidemiology has changed and today chronic non-communicable diseases predominate. The conception of health has also changed from being a charity option to being a fundamental right (1). In this scenario, the way doctors and patients relate to each other is also beginning to be reconfigured.

Through a better bond (and thus better communication), important advances can be made in other areas, such as shared decision-making, education and also in areas of advocacy.

 

Synopsis

 

In 2015 we invited patient Cecilia Rodriguez (Me Muevo Foundation), to the first PANLAR review course that has focused on reviewing the challenges we face in caring for patients with rheumatoid arthritis and a program focused on reviewing minimum standards of care and shared decisions including the opinion of other actors in the health sector, especially patients, as the beginning of the path towards a truly patient-centered medicine (2). Her presentation was a success and gave patients a voice in the scientific community that we continue to encourage. In 2016 we invited her to the PANLAR Strategic Planning Workshop, a first for our organization that was growing with the inclusion of an authoritative voice and a genuine representative of what is nowadays called an expert or empowered patient as part of what has been called PANLAR Somos Todos (3). Once again, her presentation was another success that continued opening doors in the organization.

This is how we decided to propose the creation of the Juntos Group (4), made up of both patients and physicians. Using the vision of each one from their role, we approach diseases from different points of view, with different experiences, which may be very different but when put to work JOINTLY, they complement each other and can generate solutions for the many problems faced by the doctor-patient relationship today. 

The first Pan-American Congress of Patients with Rheumatic Diseases was held in Buenos Aires in 2018, during the presidency of Dr Carlo Vinicio Caballero, with Cecilia Rodriguez as patient representative and Dr Dora Pereira as physician representative.

 

Objectives

 

The group has consolidated the idea of a permanent work and study group to outline actions through Grupo JUNTOS aimed at working with patients and improving doctor-patient relationships and communication through the understanding of mutual needs.

 

Activities

 

In 2021 these actions were recognized by PANLAR with the Pan-American Spirit Medal.

 

Congresses

 

Pan-American Congresses for Patients with Rheumatic Diseases have been held since 2018. The annual Congress for Patients with Rheumatic Diseases has been held in five editions with over 6000 patients attending its sessions. The congresses have been held under the "patients included" philosophy, as they have been an active part of the design, organization and execution of the academic program. Since the initial meetings, patients have proposed the topics for the congress's academic program (5).

 

Other activities

 

Support for these meetings, which also include meetings of patient leaders, has made it possible to reach consensuses within the group to implement programs of enormous importance, such as the Pan-American Manifesto for Patients with Rheumatic Diseases (6), the launch of the PANLAR Expert Patient Program or Patient School (7), and online continuing education programs such as the Active Patient (8).

 

Some actions to be developed by Grupo Juntos

 

1. Getting to know each other: Census of patient organizations in LATAM.
2. Joint work: Working together with patient organizations in social networks to generate combined campaigns for the month of lupus in May and for the month of arthritis in October.
3. Generating knowledge: Advance in joint projects that include the generation of academic documents on patient education such as consensus for shared decision making or advance in the work on patient reported outcomes (Patient Reported Outcomes).