Promoting patients’ proactive attitude in the care of their illness, can this generate more inequalities?

23 Jul

Joan EscarrabillJoan Escarrabill, Director Chronic Care Program at Hospital Clínic Barcelona

As participants in a mature society, we’re responsible for our actions and it’s clear that these actions have consequences. Take healthy habits as part of this responsible attitude. From the health point of view, this attitude of individual responsibility leads us to value this role of “active patient” to the maximum. In addition, we know that active patients have better health outcomes.

Now this storyline has a weakness that wouldn’t exist if we all had the same cards to play with. Unfortunately there are social inequalities. In 2014, in an article in the NEJM, Sayer and Lee explain very well this relationship between social conditions and health. Not all citizens (patients) start the race from the same point and in the same conditions. Social inequalities cause that not even “starting up early, very early…” can offset these imbalances. Naturally, from the point of view of the health care organization we can not attempt to resolve social inequalities. However, we can hope to mitigate them. From my point of view, to mitigate social inequalities we’d have to act in three directions simultaneously:

  1. Reducing the gap before the race starts: child health, education, health promotion with interaction of all agents.
  2. Providing the right tools for participation: structured therapeutic education, coaching… both for the patient and the caregiver.
  3. Providing support mechanisms to minimize barriers and obstacles and to help those who are struggling to keep up to catch up (a type of health air-bag).

Paradoxically, depending on how we approach the issue of “active patient”, we can still generate more inequalities. In some cases, the disproportionate emphasis on healthy habits is a way of transferring responsibilities to isolated individuals, which has a contradiction point the importance of social determinants of health is agreed upon.

Margaret McCartney, in her book The patient paradox, says that depending on the focus, “expert patient” programs can generate more inequalities. Some elements of the “expert patient” strategies that can contribute to increased inequality are:

  • Patients most in need don’t always participate (allegedly, more often the patients more linked to the professionals or better predisposed often participate).
  • Scalability is not always considered (a lot of “expert patients” doesn’t mean that the figure is sufficient or that the design is scalable).
  • The real impact is overestimated: the results achieved in the intervention group is confused with the impact on the system (scalability is assumed).
  • Not always there’s a relationship between “expert patient” programs and formal education, despite sharing goals to improve health outcomes and quality of life.
  • Not always health professionals stick with the role of observers (and are more interventionists than would be reasonable).

Some programs that proposed “action plans” for the patients with chronic obstructive pulmonary disease (COPD) have shown that, precisely in the group of active patients, there’s an increased mortality. However, the group that self managed the “action plan”, had a lot less contact with health professionals than in other similar experiences.

With so many uncertainties, someone could appeal to the “precautionary principle”, which in many cases is a “principle of paralysis.” Quite the opposite. No one can doubt the importance of healthy habits and the benefits of the experience of “chronically ill” patients living for years and, well, can support other patients as “expert patients”. Patient experience is also a key in therapeutic education programs where patients and their families participate in courses where they share their experience which can be of some help to others. But in all cases clinical and therapeutic needs, including the recommendations and professional advice are integrated.

Perhaps we have the key in the case of patients with COPD. Any of these strategies cannot be separated from the care process. Maybe sometimes we confuse complementary strategies with what has a priority. To mitigate health inequalities, health professionals must we provide tools to all patients. It’s not an option; it’s a duty of good practice. For this reason, structured therapeutic education channelled through various programs should be the common denominator in the care centres service portfolio.

It’s important to differentiate those individual and group activities integrated into the clinical following from the others, such as the “action plan”, the “expert patient”, group visits, individualized support for a patient, or many other alternatives. It’s very important in this sense to include structured therapeutic education plus everything that refers to the “expert patient” or other alternatives, in the next Health Plan 2015-2020. Or rather, to first include the structured therapeutic education and then the complementary elements, such as the “expert patient” and others.

In any case, when in doubt, rather than paralysis, we ought to think classics: “Nil nimis”, nothing too much.

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