What do patients really want? Reflections post-Evidence Live.

July 26, 2016


At Evidence Live 2016, attendees heard from patients, policy makers and researchers about the current challenges to integrating the best available evidence for delivery of optimal care. In socialised healthcare systems such as Medicare in Australia and the NHS in Britain, there is an added imperative to maximise the benefits from finite tax dollars. This means both limiting the potential for harm from inappropriate treatment while saving the budget bottom line from excessive testing and fruitless interventions. As I sat in the Keynote session I began to ponder: what happens then, when the best available evidence doesn’t correspond to the beliefs and preferences of those using the service?

General practitioners confront this daily when faced with:

  • Parents refusing vaccination for their children
  • Patients requesting antibiotics for suspected viral infection
  • Patients expecting diagnostic tests for non-indicated symptoms

In specialist clinics, disparities between patient preferences and physicians’ clinical judgment can result in cases where oncology patients are reluctant to disclose their use of (or desire to use) complementary or alternative medicine and HIV patients receiving antiretroviral therapy purposefully under-medicate or cease the prescribed therapy entirely . Such complexities are neatly encapsulated in a quote delivered by one of the Keynote speakers but ascribed to moral philosopher Onora O’Neill; in essence, patients are suffering from ‘information detached from communication’.

Why do these situations arise?

Is it that patients are merely uninformed, ignorant of the ‘right’ way to treat their condition? The average patient would argue not, since most come armed with a plethora of, in their mind, well-justified (and often well researched) reasons for their request or refusal. Is it that patients don’t consider their health practitioners to be trusted communicators any longer? Not so, according to the Pew Research Centre’s Report on the Social Life of Health Information, with 70% of their survey sample (n=3001) reporting that information, advice and support was provided by a doctor or other health care professional the last time they had a health issue. Yet the vast majority of survey respondents who use the internet (80%) had also gone online to seek out information about health topics including specific diseases or treatment. This accords with the trend observed in the papers discussed by Siminoff (2013) and Pound et al. (2005) that secondary sources are equally, if not preferentially, consulted for advice on symptoms and diagnosis when patients are faced with uncertainty.     

Where do patients find their information?

Last month I wrote a post exploring the validity of marketing claims around turmeric as a supplement. As a potential consumer with access to Google, the claims about turmeric may seem to have some merit.  Even legitimate sources such as the NHS Choices News site have reported on the results of studies conducted in vitro with curcumin (the principal bioactive molecule in turmeric) and Cancer Research UK has a page devoted to the potential role of turmeric in preventing and treating cancer. Both sites, however, deal with only one type of health issue: cancer, and rightly look at a narrow range of sources to guide their assessment of the efficacy of the product in question. In its favour, NHS Choices has a clear, consistent structure to their posts which lead the reader through a logical assessment of the evidence as it is presented. This may at least encourage readers to apply a similar strategy when reading about health conditions other than cancer, although alternative sources rarely provide data for their claims that can easily be interrogated. Venturing onto the ‘Turmeric Facts, Turmeric Myths’ page at Pukka we find such gems as “Curcuminoids…. are also potent antioxidants; protecting cellular DNA from the day-to-day damage from pollution and the wear and tear of life – sort of like protecting the body from rusting from the inside.” No references supplied. Despite this, such claims are convincing, with Britain spending upwards of £385 million per year on vitamins and supplements with Australia not far behind.

What are we missing here?

It is easy to forget that no patient, practitioner or policymaker is a truly ‘dispassionate information processor’ . We are socialised and schooled into certain patterns of gathering resources to help us interpret claims about health and healthcare. Because of their training, practitioners can be understandably conservative regarding claims about effectiveness of treatments where only marginal benefits have been demonstrated. In contrast, claims for the benefits of ‘alternative’ therapies, or those that straddle the border such as turmeric are unlimited in their scope. The information provided by purveyors of such products tends to be far more accessible to the average patient, than for example, the contents of the latest Cochrane review, due to their reductionistic approach to marketing health i.e antioxidants = good, free radicals = bad. The most successful marketers build on the actual work of science, adopting the language of the clinic but not the nuanced approach to understanding disease mechanisms and their therapeutic treatment. The analogy above, of bodies ‘rusting’ in the face of oxidative stress, is lifted straight from the scientific literature. A turmeric supplement therefore, becomes equivalent to an internal coating of rust proofing usually reserved for coast dwelling cars.       

Partly, this points to the realities of living in an age where ‘superfoods’, ‘detox programs’ and the wellness warriors who promote them have online platforms that the average public health agency can only dream of.  We could however, learn a thing or two from this brave new world about how to get evidence across in an equally convincing way. Or, better yet, to improve communication with patients so that they are empowered to be equally discerning about health claims whatever their source. I hasten to add that this is not a case of more information being better. It has been soundly demonstrated that the approach of ‘correcting’ false beliefs, attempted here with vaccine hesitancy, can actually produce the opposite of intended outcomes. Instead it is about sharing the techniques of evidence based medicine in an accessible way and who knows, with such newfound skills, taxpayers may end up in a superior position to scrutinise the quality of the health service that they are funding.

Sarah McNeill is a Postgraduate Scholar at the Australian National University.


Siminoff, L. (2013). Incorporating patient and family preferences into evidence-based medicine. BMC Medical Informatics and Decision Making. 13(Suppl 3): S6

Pound, P., Britton, N., Morgan, M. Yardley, L., Pope, C., Daker-White, G. and Campbell, R. (2005). Resisting medicines: a synthesis of qualitative studies of medicine taking. Social Science and Medicine. 61: 135-155.

Pew Research Centre (2011). The Social Life of Health Information. http://www.pewinternet.org/files/old-media/Files/Reports/2011/PIP_Social_Life_of_Health_Info.pdf

Greenhalgh, T., Snow,R., Ryan, S., Rees, S., and Salisbury, H. (2015). Six ‘biases’ against patients and carers in evidence-based medicine. BMC Medicine. 13:200.

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