Knowledge ≠ truth; perception = truth
If the social contract heralded in the modern world, we are now in a postmodern era1. The scientific truths that emerge from empirical studies are no longer necessarily accepted by the public as truth. Indeed people increasingly accept that there is no absolute truth, and that we each have our own subjective truths in life.
Patients are becoming consumers, evidence is balanced with values, risks loom larger than benefits, and trust in scientific authorities has been shaken by their handling of crises such as mad cow and swine flu. As patients demand a greater say in their health care, they increasingly expect their values & beliefs be considered along with the medical evidence. They want to make informed choices. The vast online conversation ongoing through social media is fertile soil for post-modernism. And what are we, the scientific establishment doing? We are up in the clouds, broadcasting dry fact-based public health messages to an indifferent public who are busy, well, talking to each other. This has been called the ‘empty vessel’ or ‘deficit’ model of science communication2. The undereducated, barely numerate public are considered empty vessels which we simply need to fill with facts and information to a sufficient level and …voila, they will accept vaccination. Problem is, it doesn’t work.
This little animation illustrates what scientific and health authorities need to do. You can see the authorities up in the clouds, absent from the conversation yet bravely broadcasting anyway in their foreign (scientific) language. They need to get down and join the conversation, starting by listening to what is being said. This should be proper active listening, to help us understand the real concerns and questions that people have regarding immunisation. Then the experts need to start conversing in the same language. They must ditch the jargon, and translate their treasured numbers into something that is meaningful to a normal person (does a risk of 1/1000 versus 1/100000 really mean anything to anyone?). They must listen, actively, and then answer the actual questions people have, not the questions they think people have. And then we will have engagement, not broadcast. And I suspect, as scary as it sounds, that may foster public understanding and perhaps even trust.
Getting the public back into public health
Back to the social contract. A contract is always between two parties, and so if the authorities must change, so should the public. They must somehow understand that even if these diseases are no longer wreaking havoc around us, they are lurking in wait. They must realize that public health belongs to the public and relies upon the public. How might that happen in the absence of fear of diseases? One approach could be to try to rekindle fear. But, as we saw with H1N1 in France3, this comes with an attendant risk. We do not carry fear comfortably; indeed we will usually do whatever it takes to unload that fear as soon as possible. As fear of the disease faded people had to put it somewhere. Somewhere like the vaccines for example. How then might we keep diseases in the public consciousness without resorting to the double-edged sword of fear? I like the idea of crowd-sourced epidemiology. Epidemiology is basically the detection and tracking and measurement of disease in a population. Vaccine-preventable diseases are traditionally tracked by ‘sentinels’ in a community such as general practitioners and laboratories. There is usually a delay before the data is available. Now there is no reason why the general public could not participate in this process. The FluNearYou app allows people to report flu symptoms through their smartphone, and to see the number of reported cases in their area. Other approaches are being tested for other diseases and other interfaces such as regular mobile phones (check out some of the great presentations at the Digital Disease Detection meeting hosted earlier this year by HealthMap). We know already that google search trends track the dengue season and twitter mentions can track flu (but not election outcomes).
My question is this: would a mother who has just reported on her smartphone that her child was diagnosed with chickenpox have some level of increased ‘ownership’ of that disease? Would that in turn augment her awareness of other diseases, even if she only sees them on a real-time map, and lead her to take steps to protect her kids from those diseases? I don’t yet have the answer to these questions, but would like to hear any thoughts others might have.
1. Gray JA. Postmodern medicine. Lancet 354:1550-1553 (1999).
2. Sturgis P and Allum N. Science in Society: Re-Evaluating the Deficit Model of Public Attitudes. Public Understanding of Science 2004 13, 55-74 (2004)
3. Report from the French Assemblee Nationale Commission of Enquiry into the planning, explanation and management of the Influenza A (H1N1) vaccination campaign. http://www.assemblee-nationale.fr/13/pdf/rap-enq/r2698.pdf