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Cristian Montenegro - Transparency and the clinical efficacy of ignorance

Fellow offers his thoughts on how to move the discussion of transparency forward

Cristian Montenegro, a Fellow of Session 553 - Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship

Cristian Montenegro | 13.03.2017

Cristian Montenegro is a Fellow of Session 553 - Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship. He is a sociologist, currently pursuing doctoral studies at the London School of Economics' Department of Methodology. He specializes in qualitative social research on health policy and services.

This post was first published on Cristian Montenegro's Tumblr page.

One would think that sharing information with the user (sorry but I think the word “patient” is part of the problem) and make him fully aware of what’s going on with his health is kind of obvious. As long as there’s information being produced about the health status of a person, then why don’t share that information in every available format with that person? If people regularly appeals to transparency laws in order to get access to this kind of information (that’s the case in Chile), why don’t we just give it to them in the first place?

During these days I’ve been participating at the Salzburg Global Seminar session 553  called “Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship,” tackling this and other issues. The week-long seminar involves a fascinating cross section of users, health professionals, communication, and technology experts, coming from Brazil, Japan, India, Australia, Canada, the USA, and Chile. 

And again, why do we actually need to discuss something that should be obvious? Well, as usual, it is only when you engage in dialogue with others that you realize how non-obvious things can be, how many different perspectives there are and how ‘opaque’ is ‘transparency’ as a theme of discussion. On top of that diversity, doctors, and clinicians, in general, do have concerns with full transparency. They have a lot to say about it, strong opinions on how positive it is, but at the same time about the risks it entails. In a sense, there’s still something complex about this apparent simplicity of transparency: there’s something about information that’s not simply information.

About two or three years ago, the BBC showed a brilliant documentary series called “The Power of Placebo.” It revealed how placebos had a measurable therapeutic impact and how they indeed produced real changes in people’s bodies, to the point where even the color of the pills used as placebos make a difference in how ‘effective’ they are: Blue pills were less efficacious than red pills, for example. Of course, the show then moved into explaining this situation in purely biochemical terms. But the stubborn sociologist in me explored an alternative explanation based on culture (broadly drawing on this influential text by French anthropologist Claude Levi-Strauss):  Placebos actually work because they are given by a clinician, and the clinician is not just a person, he’s an authorized representative of a socially valued institution called medicine. The healing power responded to the place that medicine has in society, a place of authority and certainty, and “the body,” cultural itself, also responded to this.  

In this sense, while the use of placebos is circumscribed to scientific research, what the documentary reveals has implications beyond the realm of science, implications involving the societal meaning of medicine. How can this be relevant to a discussion on transparency and information? Well, the efficacy of placebos depends on me (a ‘patient’) ignoring something, ignoring that that pill is, in fact, nothing more than sugar. Its healing power, therefore, depends on a carefully controlled economy of ignorance, of knowing and not-knowing, based on the deeply ingrained respect for medicine as an institution. What you know/not know about the real effect of the pill is the foundation of its effect. And on this basis, my point is that whether they do it consciously or not, doctors use the power of what’s known and not known by its patients as a clinical tool, as a mechanism to produce health and improve diagnostic results. They know, at a level of practice, that what you say to a patient (and especially what you don’t say) carries a therapeutic potential. Maybe to rephrase it, information, in a clinical sense, is not “just” information. Is not something that can be moved from one “mind” to another.

And the mediation or translation between what the clinician knows and what the user knows is not just a matter of simplification. Clinicians and patients are not simply located in different positions across a continuum of more or less knowledge. There is a culturally sanctioned discontinuity between them upon which the power of medicine is partly based. 

Can we have a discussion on transparency and openness that takes this into account? In my view, we can only move the discussion on transparency forward if we’re willing to problematise the social place of medicine as a whole. And when culture and cultural representations of medicine are brought into the conversation, new signs of hope and new paths towards action can be charted.

One representative from Sweden, probably one of the most advanced countries in the implementation of shared medical records told us, very bluntly: “In Sweden, the people owns the health system.” And that means that, of course, they own their medical information. Therefore, and this is important, regardless of the clinical use or the clinical consequences of sharing records, patients already own those records. There is a different relation of ownership and therefore a different cultural approximation towards medicine. I think we need to look carefully at their example, to approach transparency not only in its clinical value but in its cultural roots, as a value in itself.

The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth

Cristian Montenegro