"Our" patient experience

Paco Miralles

In a recent friends meeting, we discussed the issue of health and the quality of health care services. My friends, as users of the health care system, both public and private, related their real patient experiences, experiences that on many occasions were far from the parameters that we strive for. Once again I thought that we do many things for patients, but without counting them in (the patient in focus?).

According to a recent report from the Beryl Institute, the experience is important to 90% of patients and "extremely important" to 60% of them. That is why I asked myself if we are covering their real needs. To put a bit of perspective and see if we have evolved in an issue that is already dated, I reviewed what patients ask of us and if we consider their requests when we hear their experience.

A reasonable starting point could be an article published in JAMA in 2011 (What Patients Want From Health Care) which explicitly talked about what patients want. It largely corresponds to the recommendations of the Picker Institute.

• Regain health and return to your previous well-being situation.
• Speed of attention.
• Kindness in treatment.
• Certainty in diagnosis and treatment.
• Continuity. Ability to choose and effective coordination among professionals.
• Single room.
• Services that are not burdensome (in the United States), which we could translate to Spain for access to the largest possible portfolio of services and free of charge.
• Information on the best procedures and results.
• Treatments that require little effort. Patients prefer medication to strategies that involve behavioural changes.

Let's see if we measure up to these precepts in the survey carried out annually by the Ministry of Health, that is, the last Health Barometer published in 2018, and the study on patient experience in private health recently published by the Institute for the Development and Integration of the Health (IDIS).

Undoubtedly, the system ensures the healing of its patients, but it does so with "little" subtlety. The patient seeks a speedy recovery of their state of well-being, which is a step beyond healing exclusively and implies a community integration effort after the morbid process. After discharge, many patients have sequels or a long period of convalescence. They are then faced with an abyss of loneliness and helplessness. These aspects apply to daily life and I have serious doubts about any significant evolution. Neither in the Barometer nor the IDIS document is there any indication that we are reviewing this issue, which represents a clear opportunity for improvement (see article).

Patients don't want delays. This is one of the reasons given in the Barometer for choosing the private option. The private sector enjoys a clear competitive advantage in this field, although it’s true that lately, it’s showing signs of saturation. it’s a propitious field in which new technologies can be of great help and perhaps one of the reasons for speeding up the implementation of telemedicine systems.

Pronovost surprised us (see the post in this blog) with a Decalogue of the patient loaded with requests for kindness and education. Both the Ministry document and the IDIS document reflect the concern for these values.

With the evolution of health care, our diagnostic and therapeutic capacity improves in parallel with research. However, it may be that the associated overdiagnosis and overtherapy are in many cases hindering the good evolution of our patients. The barometer addresses this issue bravely and directly by asking them if they have suffered errors in their attendance; 10% admit that it is, but there is no reference in this regard is the study of private health.

In the patient's ability to choose, the private healthcare option wins by a landslide. However, in terms of continuity and coordination of care, in both systems less than half of the patients appreciate the effort made to improve these dimensions. This is one of the workhorses of all health care systems in the developed world. Again, technology has a lot to say and is an obvious area for improvement.

Patients want privacy in an individual room, something that a priori seems unsustainable to universalize in public health. The development of more models of hospitalization at home could contribute to this (not only in the public sphere); bringing the hospital closer to the patient and not necessarily the other way around.

Both health options suffer from the publication of health results, which is what patients demand. We have flooded citizens with thousands of data on structure and process results, such as the number of beds, the consultations attended or the discharges generated, but we have offered little of what they ask of us (see ICHOM), such as reducing the possibility of lymphoedema after breast cancer, the time to full incorporation to activity after hip surgery or the probability of causing impotence after prostate surgery.

Clinicians and managers make clear efforts to improve the health of our patients; Many parameters of interest are analyzed in the cited documents–, but I believe that there continues to be an abusive use of "my" criteria to measure "their" experience. We spend a lot of energy showing them things they don't ask of us and we strive to make them like them. Sometimes we ignore other actions that are necessary for them but that seems superfluous to us. Are we afraid to accept their needs?

Sometimes patients ask us for bread and we give them cakes. it’s not the same, although it may be similar. The problem is that this ends up becoming a standard of action. 

Link to blog Doctor Miralles