Let the patient speak! The need for patient-developed concepts of empowerment

By Brenda Bogaert

We talk so much about patient empowerment today that it is hard to imagine that the concept only became part of healthcare policy in the past few decades. How did patient empowerment come to be discussed and conceptualised? And what has been the patient’s involvement in this process?

Firstly, it is important to signal that there is currently no consensus on the definition of patient empowerment and much conceptual confusion. The genesis of the concept can be traced to the period following World War II and leading up to the civil rights movements in the 1960s and 1970s as part of wider political and social reform. Coinciding with the birth of bioethics, patient rights came to a forefront in these debates and the idea of patient empowerment was born.

The concept was then transformed due to political influences specific to healthcare. The first of these was advocacy coming from nurses and other paramedical professionals to reduce hospital asymmetries, leading to new ways of working with patients in programmes such therapeutic patient education. Another powerful influence was the rise of political movements in the United States and the United Kingdom which have encouraged the patient to be responsible in order to reduce healthcare expenditures.

These competing priorities have led to a multitude of conceptualisations and programming in healthcare institutions. Curiously, most of these concepts have been developed without patient input. Healthcare institutions and researchers define empowerment as an educational process to help patients develop the knowledge to assume responsibility for health-related decisions; or by saying that empowerment means that doctor-patient asymmetry can be reversed to enable patients to “take care” of their health. A common feature in these definitions, however, is advocacy for individual patient responsibility (for a definition focused upon patients’ values, see European Patient’s Forum).

Several things worry us about these definitions and their priorities. In the first place, why haven’t we solicited patients in a discussion which is supposed to be for them? Can we realistically assume that healthcare and patient priorities will align? As current programming has so far led to imperfect methodologies to work with the patient, we can assume that this is not necessarily the case.

In the second place, we seem to be putting an enormous responsibility on patients for their healthcare outcomes. Can we necessarily say that more responsibility is what patients want? Do we risk putting additional burdens on already vulnerable patients, causing additional stress and even burn-out? At the very least, we must realise these responsibilities may not either be desirable or realistic for all patients.

In the third place, by emphasizing individual responsibility, are we not ignoring the overall environment affecting patients’ capabilities to be empowered? It is for this reason that feminist scholars have put to task empowerment’s lack of focus on structural conditions. Similarly, the WHO has recognised the variety of reasons influencing patient adherence, including social and economic factors. Shouldn’t empowerment definitions also take these into consideration?

We cannot presume for patients either what it means to be empowered, or how and when they will be empowered. Our analysis shows that it will be necessary to solicit patients’ perspectives in order to better understand how to conceptualise patient empowerment, as well as develop successful programming that responds to individual patients’ needs and desires to participate.

 

Paper title:  The need for patient-developed concepts of empowerment to rectify epistemic injustice and advance person-centered care

Author:  Brenda Bogaert

Affiliations:

Healthcare Values Chair, University Lyon III: https://chairevaleursdusoin.univ-lyon3.fr/

Laboratory of Sciences, Société, Historicité, Éducation et Pratiques (S2HEP), University Lyon I : https://s2hep.univ-lyon1.fr/

Competing interests:  None to declare

Social media accounts of post author(s):  https://www.researchgate.net/profile/Brenda_Bogaert

(Visited 50 times, 1 visits today)