MANAGING UNCERTAINTIES OF HEALTH IN THE AGE OF RISK Ilkka Pietilä December 13, 2016
Contents shifts in medical thinking health-risks in media and on the Internet scepticism towards institutions how people respond to these messages? complex decisions based on estimating risks: prostate cancer
Risk epidemic and surveillance medicine risk epidemic in medical journals (Skolbekken 1995) from hospital medicine to surveillance medicine (Armstrong 1995) disease vs. risk factors (cholesterol, behaviours etc.) health promotion and disease prevention: focus on healthy populations increased health-awareness, health as a paramount value healthiness as a moral code and a means of social control the healthy body as an increasingly important signifier of moral worth of an individual (Crawford 1994)
Exposure to stress in fetal period and early childhood may increase the risk of having mood and anxiety disorder later in life (Iltalehti, 6th Dec 2016) DO YOU READ BOOKS? YOU CAN HAVE EXTRA 2 YEARS OF LIFE (Iltasanomat, 3rd Dec 2016) Want to live longer? Give birth in your 30s: Older mothers are TWICE as likely to reach a ripe old age (Daily mail, 7 th Dec 2016) Smoking while pregnant makes your child more likely to use cannabis as a teenager (Daily mail, 6 th Dec 2016) Take a look at your fingernails they can reveal a problem in your thyroid gland (Iltasanomat, 3rd Dec 2016)
Interpreting abstract tests: case cholesterol Adelswärd V. and Sachs L. (1996): The meaning of 6.8: Numeracy and normality in health information talks. Social Science & Medicine, 43(8), 1179-1187. The dilemma arises from the fact that whereas epidemiology speaks of risk as a measured property of a group of people, clinicians as nurses speak of risk as a specific property of an individual. Risk then becomes something that is diagnosed through abstract measurements by clinicians and accordingly something that the patient suffers as a sign of future disease. This ambiguity results in the creation of a new state of being healthy yet ill; a state that is somewhere between health and disease and that results in the medicalization of people s lives through abstract measurements. (Adelswärd and Sachs 1996, p. 1185.)
Skepticism towards changing information Lauri (53 years): For a long time I ve been following all sorts of articles and studies what s being done [..] about food and so on, what you ought to eat. They re one thing today and another tomorrow, and then back again to the beginning. Butter was banned for years, salt was banned. [..] It s just that, when there s this information available, it s coming at you from all sides, full blast, if you only want to follow it. And at our house, me and the wife we really keep up with what s going on nowadays, for example, these changes in food factors. [..] I mean, it s very hard if you want to stick to something. Now I m gonna live a really healthy life, then all of a sudden you see that you haven t been living a healthy life at all! You re not supposed to use low fat spreads at all, you re supposed to use butter because low fat spreads contain all sorts of other things. I mean, this isn t, that s completely, that s completely.. I mean it would be so nice if you could stick to some-, so that it would be some use. But if you stick to that then the next day you ll hear that you ve been doing wrong all the time.
Skepticism 2 P1 (-49): And on the other hand, who s to say what s the right ones, really healthy living habits. So that are they, what you re always hearing, are they really that good? They re not necessarily, well, there are these fads, like there s salt and there s sugar, sometimes they re poison, and sometimes again you re supposed to use them. It rather takes the bottom out of.. that one year something is y know it s like very healthy and another year it might be banned and.. Like I don t know if it s, who s to say the last word, what s real[ly health[y? P2 (-54): [that [The latest example of this is this.. acrylcramiliar in chips, what was it now, er.. IP: Acrylamid[e P2 (-54): [aye! P3 (-49): Yes, that was good when, talking about osteoporosis, it was just in the paper, about osteoporosis. That thin people well, they get things like that, but being fat protects you, so a bit contradictory things..
The Internet as a platform for organised skepticity sourse of information e.g. regarding problems related to interpreting risks: search for is 5.4 cholesterol high results in 6.500.000 hits enables exhange of opinions, experiences, tips and recommendations networking with like-minded: 1. Alternative theories: e.g. The Biggest Lie in Medicine: The Cholesterol Conspiracy, Big Fat Lie Dr. Atkins New Diet Revolution, Health Benefits of Smoking Tobacco, Heroin is good for your health, The Condom Conspiracy 2. Activism: e.g. anti-vaccination movements distrust of experts, legitimacy of institutions questioned
Complemetary and alternative therapies (CAM) National Center of Complementary and Integrative Health (NCCIH, US) divides CAM in three categories: 1. Natural products (herbs, vitamins, minerals etc.) 2. Body Mind therapies (meditation, yoga etc.) 3. Traditional forms of medicine (Chinese medicine, homeopathy etc.) around one third of Finns have used CAM (Alha 2006) every second EU citizen uses CAM, totalling in 100 million customers in the EU (Zimmermann 2015) lack of research on people s motives to engage in CAM to what extent the use of CAM is based on distrust of medicine?
Test industry as profitable business risk profiling in health care development of tests (e.g. AUDIT) tests in media sites: Make a test of your personal risk for.. equipment, e.g. blood pressure meter, activity tracker etc. medical tests as business PSA testing: http://www.walkinlab.com/discount-panels/prostatespecificantigen-psa-serumtest.html
Prostate cancer: over-diagnosis and over-treatment ~ 5000 new cases in Finland annually increased insidence caused by extensive PSA testing most screen-detected cancers are low-risk and localised 5-years relative survival rate 93% for all PCs and 98% for localised PCs active surveillance recommended as the primary treatment increasing costs, side-effects of treatments many men want radical treatments instead of active surveillance on which grounds do they make the decisions regarding the treatments? how do they interpret information they receive from different sources?
Getting rid of it why surgery? Active surveillance didn t feel nice at all cause sort of.. You d be stressed all the time, about when it ll start to spread. So that at least I wouldn t want to live like that, you know, like I was sitting on a bomb. But of course the cancer, it s possible that it ll spread anyway but surgery might still be a better choice. [..] You shouldn t play any games with it. The most important thing was just that the tumour was going to be taken out completely. That was my priority number one. And the consequences are what they are then. That was the most important thing for me. I didn t want to keep it inside me anymore. [ ] I didn t think about [side effects] cause they were sort of side issues at that stage anyway. (Pietilä, Ojala, Helminen & Tammela 2016)
Dissatisfaction with prostate cancer treatment Interviewer: Have you talked with the doctor about how s the recovery? [..] Ilpo: When I had this first year control, we talked about this. And the doctor, at that point he said that the recovery of nerve paths occurs slowly, just as I was told already before the surgery. But like this slowly, and at that point he gave me sort of a one year s extension.. for getting better. Interviewer: Yes. Ilpo: So let s say that at the turn of the year I start to have an idea about what s the condition I get stuck in. [..] Before anything, my message to the doctors is that they shouldn t promise too much. Interviewer: Hmm, yes. Ilpo: So that it s not, your life won t be the same after [the surgery] as before it. I was given a little bit too much hope but.. Well, you learn to live with this. (Pietilä, Jurva, Ojala & Tammela, under review)
Conclusions Proliferation of health-risks as well as tests to estimate them Lack of research on how do people make sense of risks Scepticism, distrust of expert and scientific knowledge Changing power relations Widening gap between citizens and (state) institutions?