Patients can easily slip off the path to better health. Where, how and why? What can be done?
Scenario: you have a disease.
How do you know?
- Your mama told you what to watch out for?
- Your friend/partner says, “That ain’t right. You should see someone about that”?
- You Googled that funny sensation?
- The clinic found it at your annual check-up?
- It’s OK, you won’t have a disease. You never get sick. (Good luck with that).
- Pray for the strength and wisdom to accept the will of God?
- Make an appointment with the doctor/osteopath/naturopath/faith healer?
- Go immediately to the E.D.?
- It’s probably nothing serious. Just wait and see if it gets better?
- Google it?
You decide that to get better, you need the correct diagnosis and an effective treatment. Your doctor/naturopath/faith healer/Dr. Google knows what they are talking about, right? And you believe them? And you understand and can afford to do what they suggest? And you will actually follow their advice, won’t you?
If you are justifiably confident on all those points, good for you — but you are probably an exception. Research published by the World Health Organisation found that between 24% and 62% of people in seven different countries have diabetes that is undiagnosed and untreated. Even for those diagnosed, treatment goals were achieved by no more than 12% of individuals. Some developed countries, such as England and Scotland, were among the worst performers.
Figure 1 tracks the pathway from onset of a disease to its outcome. One thing stands out in this: the patient’s behaviour is as pivotal in influencing outcome as anything the healthcare system does.
Figure 1. The healthcare pathway from disease to outcome
For a disease to be presented for diagnosis, the symptoms of the illness have to be recognised as requiring healthcare attention — usually the patient (or someone close to them) is in the best position to notice these symptoms.
And yet the American Heart Association reported that 50% of people in the United States suffering an acute myocardial infarct die in or before reaching an emergency department or hospital. The report notes:
“The decision to seek treatment is heavily influenced by patients’ social context, cognitive processes, and emotional reactions . . .” (p.171) and “The importance of [these] factors . . . cannot be overemphasized.”(p.175)
After the patient has presented for healthcare, the quality and timeliness of diagnosis remains significantly dependent on their behaviour. They need to truthfully and accurately report their concerns, cooperate with investigations and re-present as required for further assessment, diagnosis and management.
But patients routinely obscure and distort the facts of their illness to their doctors. Many do not complete the monitoring procedures requested and do not follow treatment recommendations, both pharmacological and otherwise.
It is hardly surprising that it can be difficult to replicate clinical trial results in real-life practice.
From a healthcare point-of-view grounded in bio-science, it makes little sense for patients to jeopardise their future health in these ways. And yet, healthcare workers trained in bio-science behave in all the same ways themselves when they are in the patient role, underlining the American Heart Association report comment on the power of social and emotional drivers, at least.
Some of the factors that probably shape these behaviours:
- Health literacy
- Knowledge of disease symptoms and signs
- Understanding of where and how to seek appropriate care
- Understanding of information and advice received
- Decision-making skills and ability to negotiate with the healthcare system
- Health beliefs and expectations
- Concerns about the specific disease and its treatment
- Expectations about disease timeline (acute vs chronic)
- Perceived necessity of treatment
- Tolerance of ill-health
- Culture and values
- Determinants of disease and prognosis (fate vs will of God vs science)
- Primary sources of care (healthcare or other sources?)
- Outcome priorities (cure? control? tolerance? dignity? escape?)
- Affect and coping
- Coping style (avoidance vs approach)
- Coping skills
- Mood/mental health
- Social security
- Partners, family and friends
- Employment status and financial security
Well, I think we can do some whittling of the list fairly quickly.
- Social security lies beyond the realms of healthcare. Healthcare is a very expensive and inefficient place to deliver remedies for social dis-ease. That is not what healthcare professionals are trained to do or motivated to do and directing them to do it is a misallocation of resources.
- Health literacy is a product of education and socialisation. The education system is probably much better positioned than the healthcare system to get results here.
- Culture and values are phenomena that emerge from an obscure morass of influences that can only be shaped over long time periods, to the extent that they can be deliberately shaped at all. Healthcare operates on a much shorter time scale.
I am not suggesting that these three categories of drivers of health-related behaviour are unimportant – quite the contrary. But they are not within the power of healthcare to fix.
That leaves the psychological drivers – beliefs, expectations, affect and coping. There are already well-established strategies and interventions within healthcare for addressing these and some promising applications of technology such as text-messaging and the internet to make them available to large numbers of people.
Progress in this area has been remarkable considering the comparative lack of investment and there is much room for increasing knowledge and capability. By investing both in the development of new knowledge and skills and the implementation of what we already know, we may gain a great deal more value from past and future investment in the bio-science basis of healthcare.
 Gakidou, E., Mallinger, L., Abbott-Klafter, J., Guerrero, R., Villalpando, S., Ridaura, R. L., Aekplakorn, W., et al. (2011). Management of diabetes and associated cardiovascular risk factors in seven countries: a comparison of data from national health examination surveys. Bulletin of the World Health Organization, 89(3), 172–83. doi:10.2471/BLT.10.080820
 Moser, D. K., Kimble, L. P., Alberts, M. J., Alonzo, A., Croft, J. B., Dracup, K., Evenson, K. R., et al. (2006). Reducing delay in seeking treatment by patients with acute coronary syndrome and stroke: a scientific statement from the American Heart Association Council on cardiovascular nursing and stroke council. Circulation, 114(2), 168–82. doi:10.1161/CIRCULATIONAHA.106.176040.
 Fainzang, Sylvie. (2005). When doctors and patients lie to each other. In van Dongen, Els and Fainzang, Sylvie (eds). Lying and Illness: Power And Performance. Het Spinhuis, Amsterdam. Pp. 36-55.
 Raebel, M. A., Carroll, N. M., Andrade, S. E., Chester, E. A., Lafata, J. E., Feldstein, A., Gunter, M. J., et al. (2006). Monitoring of Drugs. The American Journal of Managed Care, 12(May), 268–274.
 Fischer, M. J., Scharloo, M., Abbink, J. J., Van ’t Hul, A. J., Van Ranst, D., Rudolphus, A., Weinman, J., et al. (2009). Drop-out and attendance in pulmonary rehabilitation: the role of clinical and psychosocial variables. Respiratory medicine, 103(10), 1564–71. doi:10.1016/j.rmed.2008.11.020; Osterberg, L., & Blaschke, T. (2005). Adherence to medication. The New England Journal of Medicine, 353(5), 487–97. doi:10.1056/NEJMra050100
 Davidson, M. H. (2006). Differences between clinical trial efficacy and real-world effectiveness. The American Journal of Managed Care, 12(15 Suppl), S405–11. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/17112328
 I see little alternative than for government to take responsibility for developing a policy framework across economics, education and social welfare that promotes a society that enhances the well-being of all its citizens. The healthcare and justice systems are the indicators of how well these policies are working.
 Cole-Lewis, H., & Kershaw, T. (2010). Text messaging as a tool for behavior change in disease prevention and management. Epidemiologic Reviews, 32(1), 56–69. doi:10.1093/epirev/mxq004
 Webb, T. L., Joseph, J., Yardley, L., & Michie, S. (2010). Using the internet to promote health behavior change: a systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy. Journal of Medical Internet Research, 12(1), e4. doi:10.2196/jmir.1376
 For example, the US National Institute of Health allocates less than 5% of its research budget to behavioural and social sciences. FY2011 Directors Overview. National Institute of Health. Page OD-9. Downloaded from officeofbudget.od.nih.gov/pdfs/FY11/FY%202011%20OD%20CJ%20508%20compliant.pdf.
 E.g. Webb, T. L., Joseph, J., Yardley, L., & Michie, S. (2010). Using the internet to promote health behavior change: a systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy. Journal of Medical Internet research, 12(1), e4. doi:10.2196/jmir.1376