Personalised Medicine & Health Literacy (W2)

Health literacy against ehealth´s Pandora box
From the Angelina Jolie effect to meaningful strategies

Cancer doesn’t care about national borders.
Mark Lawler, Queen’s University Belfast

In the last 10 years, we are witnessing a growing enthusiasm around the potential technological tools which are designed to improve healthcare service delivery and to increase health systems quality, efficiency and capacity. We sometimes feel that we have unlocked a “prophecy box”, the answer to all the problems we were facing until now. Still, many fear that this “prophecy box” will transform into a “Pandora box” if we fail to understand its qualities and true abilities. Even more so, because these technological tools – these emerging interacting health information technologies – add another level of complexity to an already-heavy loaded healthcare system. This level of complexity is related either to the new infrastructure needed for their implementation, the storage infrastructure and/or to the discussion around health data, cybersecurity, and patient empowerment. Although the capacity of electronic health systems has already been established in numerous expert panels and committees, many health professionals, policy makers, industry stakeholders, patient and consumer organisations have raised their concern of these new ehealth tools amplifying the already-existing problem of social, financial and health exclusion of those who are not able to follow their fast and furious pace of development.

October, being a Health Literacy Month, is a time for organisations and stakeholders to promote the importance of understandable health information. Health Literacy refers to the ability of reading, understanding and acting upon health information. If we consider the literacy levels of the population worldwide, we can then only grasp the severity of the problem.  

According to the World Health Organization, “Health literacy builds on the idea that both health and literacy are critical resources for everyday living. Our level of literacy directly affects our ability to not only act on health information but also to take more control of our health as individuals, families and communities. “

The Angelina Jolie Effect

In a world where health literacy initiatives and strategies are urgently needed, an incident in the Hollywood world came to teach us that the way these strategies are being designed needs to be updated. Some years ago, the famous actress and activist, Angelina Jolie, publicised her personal story of her family’s fight with cancer. This action had a significant effect on public health and health literacy. According to the data presented at the European Health Forum´s Gastein Workshop on Health Literacy and Personalised Medicine, on referral data specific to breast cancer family history 2012 versus 2013, there was a rise in referrals from May 2013 onwards, an increase in the enquiries for risk-reducing mastectomy with no increase in inappropriate referrals.

In a world where patients and consumers are pushed and incentivised to commercially exploit their medical data, the ability to understand the nature and value of the medical data and the implications of their commercial use is under the microscope. In addition, given the nature of the healthcare system, citizens are often wondering who they can trust with their medical data. Furthermore, the Angelina Jolie effect is really a great example of influencer marketing. Influencer marketing is a form of marketing where the focus is placed on a public figure, with a powerful influence over a targeted audience and their engagement in a campaign in order to convince this audience towards a specific activity or good. In this case, Angelina Jolie is the influential public figure who managed to raise awareness around breast cancer screening.

What if we were using influencer marketing to increase health literacy around specific health issues?

Given the Angelina Jolie effect, we see how celebrities can strengthen health literacy. At the same time, these celebrities succeed because they speak to the audience through the channels and the language they understand. They truly engage with them in a human level. This “humanity” can be the key to future actions and campaigns aiming at tackling the issue of health literacy.

To conclude, the healthcare community argues that “the new language of medicine is genomics”-my question is how can talk about the new language if there are so many of us who are still lost in translation with the old one?


This Blog was written by the Young Gasteiner Lila Stavropoulou

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