Specialists by experience

By : Priscila Torres
Periodista. Presidente de Asociación Panamericana de Pacientes con Enfermedades Reumáticas ASOPAN.

01 June, 2020

"We are talking about responsibilities assumed, but the patient will only fully assume their responsibilities of self-care, disease management, changes in lifestyle habit, when they feel, in fact, included in health care facilities."

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Nowadays, patients are becoming more engaged with their own ailments and consequently, seeking greater involvement in the decision-making process when it comes to their health.

But it is not only about doctors and patients reaching an agreement when it comes to the decision-making process, but about it being the foundation for every decision taken, including every step, from the development of a new medication to its introduction in the health system, and even consideration of the appropriate timing in which the medication should be implemented during the treatment of the illness. 

When we talk about a joint decision-making concept, we also talk about owning responsibilities. A patient will only fully engage with their self-care, illness management and lifestyle change responsibilities when they feel accounted for in health care centers.

“Nothing can ever be decided about me, without me,” is the patient-centered vision developed by the Picker Institute in 1993, through research originally put into paper with patient supervision in association with Harvard’s School of Medicine.

Patient-centered care was initially designed for in-hospital care, being categorized in eight different areas:

  1. Respect for the patient’s stated principles, preferences and needs;
  2. Information and education;
  3. Access to treatment;
  4. Emotional support for fear and anxiety control;
  5. Family and friend interaction;
  6. Treatment continuation and safe-transitioning between care center environments;
  7. Physical comfort; and
  8. Care coordination.

Regardless of these patient-centered care dimensions having been designed for in-hospital care over 26 years ago, we can still perfectly apply them today, within ambulatory care and for rheumatologist-patient interactions, health and regulatory systems, and also clinical research. Patients wish to be considered and regarded as the center of every possible decision able to impact their life and their health care access. 

As an example, there are international regulatory agencies with expert patient programs. Since 1991, The Food and Drug Administration (FDA), in the US, is committed to include the patient’s perspective in every phase of their agency’s regulatory decision-making, which can be accessed through one of their specialized websites, one that is exclusively dedicated to this type of communications, and where, besides previously publishing the Patient Consulting Committee’s agenda, the FDA explains how patients, actually, take part in their actions. 

In 1995, The European Medicines Agency (EMA) started conversations with a group of HIV patients. In 2000, the “Committee for Orphan Medicinal Products” (COMP) was inaugurated, and in 2003 it was followed by the “Expert Patient Group for Categorized Topics/Committee for Advanced Therapies/Scientific Advice Working Party” which bring real life experience and decision-making accuracy to EMA. 

Based on the FDA’s and the EMA’s experiences, it becomes clear that expert patients, those who are specialists in their own illness, can help towards accurate health technology implementation, and even, towards treatment direction; by providing not only their real life experience, but their knowledge of what is truly relevant for the patient, thus, promoting procedure transparency, care humanization and reasonable utilization of health system resources.

Patients can assist doctors in several procedures such as treatment direction developments, based not only on the best available scientific evidence, but on real life evidence, and socioeconomic utility for the public and private sector’s health systems.

Patients are prepared to openly discuss every topic with the medical faculty: besides treatment directions, patients are able to collaborate with clinical study implementations, providing their vision not only as clinical research subjects, but as assistants during every step of a research, either clinical or qualitative. 

Patients are, thus, willing to contribute to a truly patient-centered journey, which could seem long, and not always easy, but that will certainly be the most accurate. 



Mathews, A. L., Coleska, A., Burns, P. B. and Chung, K. C. (2016), Evolution of Patient Decision‐Making Regarding Medical Treatment of Rheumatoid Arthritis. Arthritis Care & Research, 68: 318-324. doi:10.1002/acr.22688

The Picker Institute (1993). Principles of patient-centered care. In:

Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL. Through the Patient's Eyes: Understanding and Promoting Patient-Centered Care. San Francisco, Calif: Jossey-Bass; 1993.

Learn About FDA Patient Engagement (2019). In:

Patients and consumers (2019). In:

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