First commandment: do not make assumptions about the preferences of people who suffer from a disease

16 Jun
Joan Escarrabill
Joan Escarrabill

One of the things that we humans do quite often is to assume a fact, a situation, or what someone else thinks. We assume that our circumstance is representative of the general circumstance, that a person, by the mere fact of having university studies, has the capacity of global understanding (including that of diseases, diagnostic procedures, or about treatments that this person has never heard anything about) or that all professionals, doctors or nursing staff, think in a standardized way.   This often leads us to generalize. We do this daily. Who hasn’t said a sentence like this at one time or another: “all men are…”, “the residents are not like they used to be…”, “the Poles are…”? Assumptions, on the other hand, are not very far away from prejudices. They say that once Winston Churchill (1874-1965) was asked what he thought about the French. “I don’t know”, he replied, “I don’t know all of them”.

It is not surprising then, that this trend to make assumptions also occurs at the moment of evaluating the needs or the values of people who are ill. In general, the functioning of health organizations revolves around professionals (adding criteria of efficiency, which are not always contrasted). In this context, we trust professional experience to identify and clarify the needs of the sick people too much. But, do we really know what truly interests a person when he/she is ill?

Satisfaction surveys are a first step to get closer to the perspective of those who use a service. Satisfaction is a very comprehensive construction that comes from the user of a service and it is highly related to the user’s expectations. In addition, quite often what gives the most satisfaction is not necessarily related to the key elements of the service received or with the actual quality of the service received. The communication skills of the professional who offers a service may be related to a high degree of satisfaction, without having a direct relationship with the results obtained. Friendly incompetent people are dangerous precisely because the patina of their ways of being can conceal the consequences.

If we only use the satisfaction surveys to assess the perspective of the person who uses the service, it is possible we have little capacity for discrimination. In practice, it is still odd that in the area of health in the satisfaction surveys the same problems are consistently identified, but no action is ever taken. The key element is to be sure of the relevance of the feedback of the people who come in contact with health services.

One of the barriers in appreciating the value of the patients’ feedback is the professionals’ skepticism of just how knowledgeable the patients are about the organization as well as the technical aspects. Well now, what we must not confuse is that it is one thing to “not know what you want” and another, which is very different, “to know perfectly what you don’t like”.

Sick people (and people who care for them) know perfectly well “what they do not like”. These people identify the touch points, or points of contact, which can generate unpleasant, problematic or critical situations (in this case they would be “pain points”, or “trigger points “) perfectly. The best way to identify these situations is to ask explicit questions and to not make assumptions.

There is not one unique methodology to collect the perspective of those who suffer from diseases. You can use quantitative methods (surveys of all kinds: face-to-face, online, by telephone) or qualitative methods (interviews, focus groups and/or analysis of complaints and suggestions).

Being interested in the feedback about the care offered is very good, but it is not enough. Angela Coulter affirms that it is unethical to collect data on the experience of the patient and then later ignore this information. That’s why, more and more every day, talking about the patient’s evaluation of the experience has a triple dimension: a key element in the evaluation of quality, a very powerful leverage and a strategy to improve the empowerment of the patient.

Doyle et al expounds that the patient’s experience, the effectiveness and clinical safety are closely linked and suggests that we must consider the patient’s experience as one of the pillars of the quality of health care.

The sick person’s perspective is very important for identifying opportunities for improvement in the provision of the service. And the step into action must be done involving everyone who plays a role in the care process. The concept of “co-design” in the framework of health care refers to cooperation between professionals and people assisted in the design of the transformations of the service, from the beginning of any improvement process and in all directions. The “co-design” represents a radical reconceptualization of the role of patients in the process of innovation in the provision of services.

Lastly, the evaluation of the patient’s experience cannot be separated from the information or from the therapeutic education that, in the end, should contribute decisively to the activation of sick people caring for themselves, through a deliberative process. This activation to address the disease within a framework of shared decision making improves clinical outcomes and has an impact on the cost.

The video about empathy from the Cleveland Clinic is an example that can be used to avoid “assumptions”: Empathy: The Human Connection to Patient Care. The solution is very simple. Instead of making assumptions one must observe and ask questions.

Post written by Joan Escarrabill, (@jescarrabill), director del Programa de Malalties Cròniques de l’Hospital Clínic de Barcelona.

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