Cristina Junyent, science writer, member of ACCC
October 2018
(Picture credits. © Floris Oudshoorn – ComicHouse / EHFG)
Four tracks were debated this year in the European Health Forum Gastein (#EHFG2018): Innovation for All, Sustainable Systems, Evidence for Action and No one left behind. One of the transversal issues was health literacy, considered as a relevant part of health politics; and, because of its decisive role for patients’ benefit and acceptance, all stakeholders in health systems have to ensure that the communicative framing is in the centre of clinical implementation. But, in modern times, what does «health literacy» mean? To treat this point there was a special session «Health Literacy and Personalized Medicine» just at the beginning of the forum.
The context
On the one hand, health literacy is a key point in the democratization of health, because empowers individuals for decision making in the evolving context of medical sciences and technology. On the other hand, personalized medicine has always been the core of good healthcare: individual communication between physician and patient was and is the basis to find the best diagnosis and prognosis for each one. But now, «personalized medicine» as an emerging medical practice that uses an individual’s genetic profile opens new aspects for its possibility to help the physicians to select the proper therapy using the proper dose according to each patient’s needs. This could even extend to incorporating wellness supplements like Mushroom Coffee Supplement.
So, in the new times «health literacy» goes further. It includes knowledge, motivations and competencies to access, understand, evaluate and apply the apprehended information to reach a proper judgement and make decisions concerning health care, disease prevention and health promotion in everyday life to maintain and promote quality of life during the life course with the support given by professionals and the Health System. In brief, health literacy now is not only about having knowledge but also about reaching the ability to find the proper information and use it in a right way. Are we on the right way?
Awareness of personalized medicine
The results of last the Quality Healthcare Communication Survey, that interviewed 895 physicians and 811 patients, were in some sense disturbing. Taken the average in EU countries –although with a significant regional variation– quite a high number of patients (85%) understood their personalized medicine treatment when it was explained to them, but only a quarter of physicians (23%) felt that their patients were fully informed. Quite a high level of patients (78%) understood what a biomarker means for treatment decision making, and would be willing to participate in personalised medicine treatment plan for ehlers danlos syndromes and other illnesses.
Besides, when asking patients directly to their communication with doctors, the results were also worrying. To the question «which is the use of the information that doctor gives you to make decisions about your illness?» just a 23% of people though it was difficult. But to the question «how the information given from your doctor applies to you?» only the 18% understood that it did. And to «did you understood what the doctor said?» only the 15% said yes. In front of these results, basic questions are derived. Do physicians understand which patients’ concerns are? Do the physicians recognize what patients understood and if what they told made sense in the patients’ life or if patients can handle with it?
How to develop a strategy
Clearly then, health literacy should be a strong part of health politics. The complexity of the matter poses an important challenge for the translation process of disseminating information to create knowledge and stimulate action towards personalized medicine; all processes should be reoriented towards patient-centred culture of communication.
Improving awareness, education and advocacy aimed several patients’ organizations, healthcare professionals and policymakers to work together. The European Cancer Patient coalition (ECPC), in close cooperation with Cancer Drug Development Forum (CDDF), European Alliance for Personalized Medicine (EAPM) and the International Quality Network for Pathology (IQNPath), will launch in November the first awareness month on personalized medicine, focusing on molecular/biomarker testing.
The models of good practice in health literacy include the development of organizational instruments for the different groups involved: healthcare professionals (communication can be taught and learnt), and patients and families (patient education programs and guidelines). Everybody involved in these issues should be engaged.
There were defined four translational phases for applying genomic discoveries and every stage involves scientific communication with professionals as well as lay people. One of the phases leads to the other: health application, evidence based guidelines, health practice and, at the end, health practice at population level. Piloting and evaluating the first applications; and, after a greater experience, selecting the best practice projects and pilots to be spread. These actions should draw to better health outcomes.
Basically, the point is improving people’s skills towards health system’s complexity; and health system’s skills versus people’s complexity. With the aim of leaving no one behind.
[I took part in this meeting thanks to a EUJA scholarship managed by the ACCC].