Wondering about the cost of democracy may appear to many a silly endeavor. Democracy is a way of life that allows different value systems to co-exist peacefully and constructively – it is of everyone’s interest (well, in principle at least). If we look back, there was a time when people had to fight for it; now it makes up part of the constitutional rights in many places. For that reason, we tend to believe that we live in democratic society. But are we really? Can we engage in discussion with others assuming that we all value democracy? My ongoing research on patient involvement (and my observation of the current state of politics in Japan too) suggests otherwise, I am afraid.
The models of bureaucracy and technocracy both share the idea that someone is better informed and hence, is more capable than others in making the right decisions for society. The nature of their expertise as well as its relevance to the issues at stake is seldom questioned. In contrast, if ‘non-qualified’ citizens, or patients in cases of medicine and healthcare, are to raise their voice, not only their relevance to the issues but also the merit of listening to their voice for society has to be proved. The challenge is not that their relevance or the merit is hard to demonstrate, but is that ‘the burden of proof’ more often than not lies with citizens and/or patients. In other words, they have to bear the cost in raising their voice.
An important contribution of an academic field called science and technology studies (STS) is making explicit the value of such a used-to-be-marginalized voice by introducing the notion of ‘local knowledge’ – in a way it turned citizens (and patients) into experts of some sort. But what else would reduce the cost and eventually eliminate the burden that they currently bear? At the workshop on access to treatments for rare diseases that I co-organized with my colleague at the University of Edinburgh last year, we heard that companies and regulatory agencies are both interested in understanding what patients and their families value. However, they can recognize the voice of patients and their families only when they are presented in a form of ‘evidence’.
Hence, studies of ‘evidence’ – what it is, who uses it, when it is used, how it is used etc. – would potentially reduce the cost of democracy and enable more citizens (and patients) to raise their voice in the domains of science, technology and policy, where experts tend to dominate. And hopefully that would also help many realize how valuable their voice are for society.