Patient experience and Co-Creation in Health

Co-creating patient experience in health, pharma and wellbeing

“Medicine is not dehumanized, but healthcare yes”

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The Spanish 20th Congress for Healthcare Humanization took place in a Madrid Hospital on May 27th and 28th this year.

Concha Zaforteza

Concha Zaforteza

One of the most interesting speakers was Dr Concha Zaforteza, an outstanding specialist in the use of participatory methodologies for change management in clinical praxis. More about her brilliant path as a researcher and nurse can be read here (in Spanish).

During the congress I had the opportunity to talk to Concha Zaforteza about humanization, participatory work in healthcare and the value of nursing studies.

You have worked applying participatory methodologies to improvement in clinical practice with critical patients. Can you describe some examples?
We have conducted three participatory action research projects in three intensive care units (ICUs) on the Balearic Islands in order to improve attention to relatives of critical patients. I say “we have conducted” and not “I have conducted” because we are a research team of 13 ICU professionals. Besides, 120 more professionals worked altogether in the three ICUs.

This research took over 3 years and we achieved specific changes. For instance the enlargement of visit hours, the increase of vocational training in the management of situations with high emotional impact or the publishing of a care guide for relatives of critical patients, among other initiatives.

Another change happened in the way ICU professionals perceived patient relatives. They ended viewing them as foreign actors and started seeing them positive resources for the patient.

What are the most important advantages of participatory methodologies?
In the context of healthcare we observe an international concern on how to produce changes in clinical practice when we have not the best possible practice. Or when the best possible evidence is not applied. In the 90s people tend to think that the publishing of guidelines for clinical practice, healthcare professionals would apply them straightforward and thus care would be closer to the “ideal”.

It was a good approach, but it did not take into account the complexity of healthcare environments nor of its “inhabitants” (actors). Therefore, the problem was far from being solved.

Nowadays, these particularities are acknowledged and it is admitted, that change approaches must be multifaceted and designed for the environments they are targeted to. In this sense, participatory methodologies, that give voice to those agents more involved into the problem, developed solutions within the context and sustainable in time.

Action research: a kids workshop in nanomedicine

Action research: a kids workshop in nanomedicine

And what are their disadvantages?
Good question! There are disadvantages without any doubt. It is a matter that has not been researched, so that I can only speak from my own experience and from those projects done in the public and private health sector.

First, they demand a huge energy investment, so that those initiating this kind of processes have to take this into account and be ready for that. Second, they have a glass ceiling when they are confronted with structural barriers and decisions taken outside of the context where they have been designed. In order to overcome the glass ceiling more energy is needed as well as true strategic skills. Third: from my point of view they need an effort to balance the interests and priorities of all participants. Without this balance, participants may burn out because their expectations have not been met. This is a very important task of the main researcher or facilitator.

I imagine it is very difficult to co-design with critical patients, but do you work with relatives?
Indeed, it is very difficult when the patient is unconscious. But with the conscious patient, if you manage his anxiety I believe it can be even therapeutic. Regarding the family, I believe it is possible to co-design with them. They can become very privileged informants.

Recently, talking to a physician about a study to improve patient experience, he told me “this is a nurse study”, implying that he was there for “serious science”. What is the impact of “nurse studies” in clinical improvement and cost optimization?
It depends very much on what we are talking about. There are studies where quantification is easy and other where financial valuation would be irresponsible, because certain things cannot be quantified with classical evaluation strategies.

I will tell you a classical example: pressure ulcers (PU). Pus are wounds that appear in places like heels, sacrum or femur trochanters and that happen when the patient is in bed for a long time and immobilized due to the pressure the tissue experiences between the bone and the mattress. They are serious wounds that can take over 155 days to heal. Nurses have a crucial role in prevention. It is said that 95% of PUs can be avoided. There are four degrees of seriousness. Well, if nurses invest time in prevention they save 1.738 if the UP is of degree 1, 87.906 if it is degree 2, 146.552 at degree 3 and 178.066 at degree 4. This besides of all the SUFFEREING and pain you can avoid.

Therefore I doubt a study can be regarded as not serious if it is not done by a physician.xx jornadas

There is in Spain a project, “Humanizing Intensive Care” you know well (we recommend this interview with Concha Zaforteza. Is medicine really so dehumanized or have we become very demanding the more medicine develops?
Not medicine is dehumanized, but healthcare. This is even more serious, because it implies not only physicians, but also other healthcare professionals. I do not dare to say we are dehumanized: I would say priorities have to be reset and we need to go “back to basics”. We are so disease centred and so much focused on specialized knowledge that it seems that those aspects of care that do not have the name of a pathology do not count. Therefore, achieve that a patient sleeps, rests, that he gets washed and not harm his dignity, manage pain acknowledging that each one feels different … remember that we all like a smile, we all need company, they seem sometimes like goals from another universe.

Thank you very much for such an interesting talk.


Autor: Carlos Bezos Daleske

Siento curiosidad por todo lo relacionado con personas y organizaciones, especialmente en salud. Me gusta trabajar con personas y con su capacidad de innovación y co-creación. I feel very curious about everything related to people and organizations, especially in healthcare. I enjoy working with people and their ability to innovate and co-create.

3 pensamientos en ““Medicine is not dehumanized, but healthcare yes”

  1. La organización internacional sin fines de lucro, Planetree está trabajando ya casi 40 años a implementar su filosofía “Atención Centrada en el Paciente” en centros médicos del mundo.
    Según Dra. Frampton, Presidenta Planetree , hay tres palabras que caracterizan la Atención Centrada en el Paciente: personalizar, humanizar y desmitificar.
    Personalizar: ¿cómo podemos personalizar la experiencia del cuidado de cada paciente para que no se sienta como un número o una enfermedad o una parte del cuerpo, sino una persona completa?
    Humanizar: ¿cómo nos aseguramos de que – en un mundo de muy alta tecnología – ponemos al ser humano en el primer lugar y aseguramos de que no haremos cosas a las personas que les deshumaniza? Pacientes expresan muchas preocupaciones respecto a los impactos negativos que tiene la tecnología en la experiencia humana, en que el equipo médico presta más atención a la pantalla del ordenador que al paciente.
    Desmitificar: necesitamos desmitificar la experiencia de los pacientes para que ellos puedan comprender, en su propio idioma, lo que está pasando y cómo pueden ayudarse a sí mismos. Como industria, no hemos hecho un buen trabajo de eso; tenemos nuestra propia lengua “médica’ que incluso gente educada tiene dificultades a comprender. Desmitificar el cuidado significa hacerlo más transparente, no sólo en la forma en que se describe las cosas, sino también en volvernos cada vez más transparentes en lo que queremos compartir con los pacientes.
    Para más información:, para países hispanohablantes:

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