Pedal and ask

Joan Escarrabill

On November 18, 2019, the so-called Experience Exchange Space (EIE), a living lab, was inaugurated at the Hospital Clinic. Setting dates of notable events allows build ephemeris or, at the least, landmarks. They say that on November 18 William Tell shoot the apple from his son’s head (1307), on November 18 Mickey Mouse was also seen for the first time (1928) and it’s also the day of the year in which Niels Bohr died (1885-1962). Naturally, the inauguration of the EIE will not be part of any general reference, but it’s an important point in the approach to evaluating (and taking into account) the experience of patients in our Hospital. 

Right now it doesn't take much to talk about "value" from a patient perspective and Michael Porter already seems familiar to many of us. But even so, when we talk about the patient's perspective, it’s easy for us to talk about "satisfaction". The Guardian newspaper (June 20, 2019) publishes an article on the decline in satisfaction of patients admitted to National Health Service hospitals. Some of the key facts are: one in ten say they waited too long to be referred to the hospital; one in six say they have had to wait too long in the emergency room before going to the hospital bed. 40% of those surveyed said that they have waited too long to get help from staff, one in three that they have not controlled their pain well and also one in three that they have not received enough help with personal hygiene. 63% of the people admitted have not been able to discuss their fears and concerns with the staff and, the most disturbing fact, one in five people admitted they doesn’t trust the doctors and nurses.

I don't know if this photograph can be extrapolated to our country, or if it’s out of focus. In any case, with the usual tools, we cannot measure the experiences of patients. Taking into account the experiences of patients requires significant changes in the way we relate to professionals and patients and in the way we evaluate patients' experiences. We can identify three important elements in these changes:

a) The conversation instead of the prescription. Under the influence of Victor Montori, it’s about recovering the conversation as a tool for building care plans that take into account context, evidence and personal values.

b) Reciprocity. the relationship between patients and professionals should be built in such a way as to minimize the asymmetry between them.

c) Co-creation is essential when dealing with complex proposals. Besides being a more respectful approach, co-creating is a good way to facilitate the subsequent dissemination of innovations.

The physical space plays a role: the hospital bed, the office or the operating room make a significant difference. The Hospital Clinic opens the EIE to try to approach this evaluation of patients' experiences differently. The EIE is not "just another space". These are some of the characteristics of the EIE:

a) Open space. The EIE is an "open space" for patients and professionals with a clear desire to avoid prejudice and stigma. Also open to all actors in the health ecosystem. The EIE is flexible because it has no predetermined functions; it’s accessible because it wants to minimize barriers (physical and knowledge). it’s open because it’s interested in the first place in the questions and the definition of the needs.

b) Free space. Patients and the people who care for them can address the issues they want, without any element or person from the healthcare device that can influence or restrict the argumentation of the people who attended. There are many combinations: single patients, group patients, patients and professionals together, professionals alone. In any case, the opinions differ from the discussion of personal clinical problems (which takes place in the consultation).

c) Safe space. No limits in conversation to express ideas, feelings, or fears. The first maxim is DO NOT make assumptions.

d) Space to talk about the real world. Interest in the way people experience the disease: context counts and this leads to trying to understand the whole process rather than isolated procedures (systemic vision).

e) Co-creation space. Co-creation is a dialectical and open process to share knowledge and find solutions to problems through multiple interactions with the contributions of all those involved.

f) Training space. Share what we are learning, rather than teach what (little) we know. Knowledge expires quickly and it’s essential to build networks to share skills and knowledge.

g) Research space. Addressing some problems can only be carried out within the framework of research projects with broad consortia that guarantee diverse knowledge and attracting resources.

The EIE is part of a conceptual framework that closely links information, therapeutic education, evaluation of patient experiences, and participation. Information and therapeutic education are already well underway in our health system. But what is crucial is participation, especially on the question "who is the patient representative?"

At the time of opening the EIE, it’s necessary to further specify the answer to the key question: "Why?" it’s not enough to appeal to the paradigm of value. In a plural society, there are no homogeneous values. That is why I dare to say that the most important answer to "why?" it’s the need to integrate various worlds in a common space. We will use diverse methodologies, of course, but we must be careful that the methodology is not the objective: it’s better to see blurred than not to see anything. And all this activity has to lead to doing things and turning them into things that change the way healthcare services are offered. On the way of doing things, we can extrapolate some reflections by Daniel Innerarity in “La maleta de Portbou” (1). We need to be clear that "things" are done in an ecosystem so there are no relationships but interrelationships. This means that all those involved influences each other, they not only greet each other politely and exchange products or services. The "things" that are done affect people and personalization is important. But we must remember the "I" (personalization) is not understood without the "we" (common good). Finally, with this vision of an ecosystem, it's difficult to speak of healthcare devices or healthcare settings isolated from the rest. As in the body, exchanges take place in the extracellular space (the "third space"), where the boundaries are blurred.

The EIE should promote interactions to find solutions to problems that benefit people by trying, erring and correcting. Evaluating patients' experiences is an exercise to find meaning in what we do: "The humanities are the set of activities with which we elaborate the meaning and value of the human experience for their dignity", says Marina Garcés in the excellent book "Humanidades en Acción".

The difference between a mechanical workshop and a health care service is that, to solve problems, in the workshop, they stop the engine. On the other hand, in the case of health care services, problems have to be solved without stopping the engine. So we have to pedal and ask simultaneously.

Bibliography

1- Innerarity, Daniel. La política, como la vida. La Maleta de Portbou. Nº 36. July/august 2019. Pag. 21-25.