First World Patients Café: participatory healthcare with patients

Instituto-experiencia-pacienteThe past January 29th, the Institute for Patient Experience in Spain organized the first meeting with patient associations using the world café format. The goal was to know better patients associations’ needs as well as establishing a closer and more personal relationship beyond the institutional framework. For this reason we chose the nice Café Figueroa in Madrid downtown.

One of the participants was journalist Emma Bernardo. Besides her excellent professional work at the program “Esto es Vida” (Spanish Public TV) and “Aquí hay Salud” before, Mrs Bernardo was student at the renowned design thinking school H2I, so that she is well acquainted with human centred and participatory methodologies. Mrs Bernardo described her experience in her blog and she did it so well that we asked her to allow as to copy her post in our blog. We would not have described the World Patients Café better.

First World Patients Café: participatory healthcare with patients

Emma Bernardo

Emma Bernardo

By Emma Bernardo

Pictures: Carolina Egea



Last Friday, the Institute for Patient Experience organized the first World Patients Café, a participatory medicine workshop with patients and healthcare professionals. World café and participatory medicine have a common goal: the active participation of patients, healthcare professionals, caregivers and other healthcare actors.20160129_180837

We spent three hours were we could experience for ourselves the benefits of participatory medicine, a little demonstration of its power and the best way for co-creation evangelists:

  • Improve results
  • Reduce medical errors
  • Increase patient satisfaction
  • Reduce healthcare costs

In order to achieve this, the Society for Participatory Medicine establishes some guidelines:

  • Patients and caregivers participate in their healthcare as active as possible
  • Healthcare professionals must be highly effective in  integrating and applying patient’s contributions
  • Facilitate co-operation among patients, caregivers and healthcare professionals
  • Access without restrictions to all medical information that allows the full co-operation among the three groups

Three working desks for improvement
This participatory philosophy was present at all three tables of the firsts World Patients Café that allowed us to gain following insights:

Patient associations

  • There is a need to strengthen the sense of membership
  • The goal of patient’s associations is that healthcare does not end when getting out of the consultation. Associations help patients to become empowered.
  • Patient’s often do not know their rights and therefore cannot use them.
  • There is no specific degree as patient association manager and it starts to be needed.

Patient-physician relationship

  • There is a great difficulty when physicians communicate diagnostics. Some patients stated that in only 10 minutes doctors tell about a chronic pathology that will change your life forever.20160129_181347
  • Sometimes a psychologist would be needed, but there is no such service available in most hospitals.
  • Nurses play a key role in patient experience. Nurses are perceived as close and as backing patients in their treatments.
  • The relationship between doctors and associations are sometimes tense
  • Doctors should receipt in some cases associations to the sick, so that they get in touch with peers.

Pharma industry-patient relationship

  • Pharmaceutical companies do not enjoy a good image from patient’s side; although this perception is changing. Many laboratories are getting more involved and supporting patients.
  • Currently in Spain there is almost no relationship between pharmaceutical companies and patients. One of the reasons are the compliance restrictions, especially regarding contact to individuals.
  • Patients have to acknowledge that pharma companies invest in research and that this activity produces new drugs for the patient’s wellbeing and quality of life.
Written by Carlos Bezos Daleske
Director IEXP