In the age of alternative facts, WikiLeaks and the routine denigration of expertise, knowledge and ignorance have become highly politicised. Of course, knowledge has always been political: and nowhere is this more evident than in health and health care.
Historically, many political movements for health have been built on the right to access knowledge about our own bodies, health and medical services. The feminist Boston Women’s Health Collective, for instance, organised around empowering women to take control of their health and sexuality through sharing knowledge and experiences. Talking and learning from experts and from each other, they opened up what were then largely taboo areas such as menstruation, birth control and abortion.
Since the 1970s, a digital revolution has made knowledge about bodies, medicine, health and healthcare easier to access. For many of us, scientific and experiential knowledge is just a few clicks away. With increasing access to digital self-monitoring, this has expanded to information about our bodies as well as bodies in general. In health policy terms, the argument that the population should be well educated has been widely accepted, with health policies in many countries orientated to concepts such as health literacy, the expert patient, and opening up data about health services to the public.
So has the battle for health knowledge been won? Probably not – there are many areas where access to education in general, and to health education in particular, are under attack. But more fundamentally, the political fault lines have shifted. No longer is the issue one of wrestling esoteric knowledge away from patrician doctors. It is more one of asking who wants us to know (or not know) what? And why, and with what effects?
Science historian Robert Proctor coined the term agnotology to describe the deliberate creation of ignorance. His initial example was the discovery the tobacco industry’s strategy of deliberately fostering doubt around the scientific evidence for harm from smoking. One agnotology tactic is to promote the view that there are always two sides to a story: that ‘balance’ is needed, or that ‘experts’ disagree. This strategy has been remarkably successful – as can be seen in more recent debates over climate change, with the deliberate promulgation of uncertainty around the ‘truth’ of scientific findings on global warming. Big tobacco, or oil companies, might hide knowledge: but they also, therefore, have a vested interest in the deliberate creation, and dissemination, of new and alternative sources of knowledge to destabilise any possibility of expert authority. Pressures on news services to present ‘balance’ then lead to marginal opinions being brought in to counter scientific evidence, as if both had the same weight. For users, the challenge is no longer how to access knowledge, but how to assess knowledge claims.
A critical barrier in evaluating knowledge claims is the sheer amount of information now available. Knowledge in medicine is expanding exponentially – one report on science, technology and medicine estimated that in 2014 around 2.5 million articles per year were published by 28,100 peer-reviewed English-language journals. Of course, there is also a growing industry devoted to managing and synthesising this knowledge for various users, including health professionals and patients. However, this often merely adds to the problem. Over 10 years ago, in a letter to the Lancet, two clinicians estimated that the guidance relevant to eighteen patients they saw in one day ran to some 3,679 pages, which would take around 122 hours simply to read. They noted, with admirable understatement, that:
“This may be possible to do, but will have far-reaching implications for job planning, educational development of doctors, and organisation of care”
At the sharp end of clinical practice, more ‘knowledge’ has, then, lost opportunity costs. Beyond that, though, it also has the effect of undermining professional authority. Given the impossibility of ever being completely up to speed on the latest findings, or the most recent evidence-based protocols, or the latest audit procedure for monitoring your ‘up to date’ knowledge, professionals at the sharp end are always potentially anxious: about being out of date or unable to cope with the overload. So we turn to various ways of filtering: following trusted people on Twitter, accessing content from authoritative sources. But how to trust the evidence brokers becomes a skill in itself: yet more knowledge to acquire. Even for experts, this is not easy, as blogger Laika describes in a piece about the dubious credibility of one such service aimed at clinicians.
And finally, there are of course sometimes overtly political interests at work in generating knowledge. NHS hospital performance data are one such example. Performance indicators such as the ranking for the waiting times, mortality rates, and patient satisfaction with the hospital to which you have been referred, are all now collated for access by the public. While this may superficially look like a democratising of knowledge, it has some rather dubious effects – including framing hospitals as if they were any other kind of consumer service. While rankings may be useful for selecting a hotel for a city break, it is hard to see how patients, with little actual choice about where they go for care, are meant to do with these. What are the costs in the anxiety of realising that your referral is to a hospital that ‘requires improvement’? One assessment of these NHS performance measuring systems found 20 dysfunctional consequences, which included:
“poor measurement …, misplaced incentives and sanctions (complacency, silo-creation, overcompensation, undercompensation, insensitivity and increased inequality), breach of trust (misrepresentation, gaming, misinterpretation, bullying, erosion of trust and reduced staff morale), and politicisation of performance systems (political grandstanding and creating a diversion)”
These are very high prices for a dubious kind of transparency.
So knowledge is power, and there are good feminist, moral and utilitarian grounds for investing in the democratising of knowledge. But, we need to remember that all knowledge is embedded in political relations. ‘Knowing’ things, without understanding how and why that knowledge was created, does not necessarily lead to health gains.