We live in a land of experts. Our modern life seems very complicated and we depend on experts to help us and tell us what to do for everything from computers to rearing our children. We are ruled by an expertocracy. Having an expertocracy solves some problems; we can save time that we would have spent learning about the technology we use everyday, and if all goes well, find solutions that are better than what we would have come up with on our own. However, it also creates two large problems. First, we may find ourselves dependent on experts and find ourselves feeling helpless and disoriented when they are not around to guide us in even some very basic aspects of our lives. Second, in any power structure, there will be both legitimate and illegitimate leaders. Blindly trusting experts leaves us vulnerable to following pseudo-experts who can take advantage of us and harm us and our families in the process. Nowhere is the power of an expertocracy more obvious and potentially more dangerous than in health.
Medicine has a long history of shrouding its power in secrecy – shamans and medicine men owed their healing powers in part to their unique status in society, as a bridge between humans and the spirit world. In the recent past, doctors often kept their medicines and therapies secret to build their business and discourage competitors. Even now, doctors and scientists hold a privileged role in society and speak a language that most of us don’t fully understand.
To be clear, by forwarding the concept of the democratization of medicine, I am not proposing that anyone can perform brain surgery or propose a cure for cancer. Rather, I am proposing that everyone has a responsibility to learn the basics of health so that they can be active, informed and engaged advocates for themselves and their families. Consistent with the field of shared decision making, I believe that people living with serious illness deserve a greater degree of respect as an equal partner with physicians and other clinicians in making health decisions and health professionals do not make decisions for them (e.g. about what treatment to pursue, what information they can handle) without their consent. Lastly, I believe that we need to question people’s claims to medical expertise in terms of qualifications, competence and intent. As we have seen very clearly and tragically during the COVID pandemic, pseudo-experts can be dangerous and expensive to society.
I am working on several essays, research projects and patient resources tied to these concepts. I am also excited to have recently completed a book proposal tied to these ideas: Dangerous and Expensive Bullshit. I am currently looking for an agent and publisher.
Democratizing Health: Key Publications
Here is some of my past research if you’d like to learn more about Democratizing Health.
An essential aspect of democratizing health is providing people living with serious illness the information they need to make their own decisions. This collaborative paper involving colleagues at the University of Colorado, patients and families provides the metaphor of a roadmap as a useful framework for discussions. It avoids the trap of thinking medical professionals need to provide an exact timeline or crystal ball to have a productive conversation.
I was honored to get to work with an amazing group of people living with Parkinson’s disease and family care partners who developed a prescription for the medical community on how palliative care should be offered throughout the course of early, middle and late-stage disease.
This paper highlights the shortcomings of making a diagnosis of dementia based solely on the results of neuroimaging. In this study we showed that PET scans more often than not led to a misdiagnosis, most often labeling someone as having Alzheimer’s disease who did not have Alzheimer’s, and in some cases didn’t even have dementia.