64 Pharmacovigilance and participatory medicine through social media – we are still not there

Abstract

Turning citizens into patients may not be just unnecessary, but also premeditated. Disease branding is a marketing technique that prompts existing or potential patients to get checked and consult their doctors for diseases that may or do not even exist. It is hazardous, pervasive and poorly regulated misinformation. We conducted a systematic literature review of scientific publications, searching for the most branded conditions over the last 15 years, and found hundreds of symptoms and diseases that we should be aware and that are daily promoted, on- and offline. The mostly branded conditions retrieved through our study are the chronic ones, followed by assumed chemical imbalances in our brain, and by pituitary disorders. According to participatory medicine, patients in and out hospital wards have the most significant responsibility when it comes to their health. They are the ones who shall educate themselves and decide what is best for them and their dear ones. The good news is that this is already happening. In our digitalized era, there are patients or those speaking on their behalf who comply with the suggested treatments, observe the reactions, and share information and experiences online, through social media. These social debates should trigger changes in the clinical trial experience as well as in the post-marketing experience – but do they? In this research, we decided to focus on two of the previously retrieved most branded conditions and followed the tweets about them posted by both those in favor and those against, by those who underwent treatment and took drugs, and those who promote both. Our outcomes confirm that we have to think deeper and broader when it comes to participatory medicine, to allow it to be genuinely participative. Objectives Identify the mostly branded conditions and symptoms in the medical literature in the last fifteen years (2002–2017). Understand and acknowledge the social media dialogue of users of suggested drugs and treatments and compare it with the mainstream information on the same as provided by producers and supporters. Method A systematic literature review of mongered conditions in the last fifteen years, followed by a comprehensive social media data analysis of tweets on two of the most branded conditions. Results We followed the post-marketing experience of users, the active online participation of patients and those speaking on their behalf. We collected their narratives on side effects and adverse reactions to a particular drug or treatment. In light of these inputs, we could not find significant changes in the marketing communication, production or distribution of the same drug and treatment, thus leading us to think that some users’ voices were left unheard. Conclusions Undoubtedly, a participatory medicine that takes into account the social media discourse could lead to improvements and upgrades in drugs and treatments, a win-win situation for producers and researchers. Nevertheless, our outcomes mirror a reality that shows the opposite. Even by assuming that a patient is merely a client for the drug producer, there still exists an ethical obligation to customer care. In the medical field, customer care should represent an empathic approach to the customers’ experiences with the drug or the treatment, followed by action triggered by their complains and suggestions. Participatory medicine can include online participation as an active form of social engagement to real-time health issues. In this way, even if treated as a client, the patient will at least be a happy customer.