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Establishing a Taxonomy of Potential Hazards Associated with Communicating Medical Science in the Age of Disinformation

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Establishing a Taxonomy of Potential Hazards Associated with Communicating Medical Science in the Age of Disinformation Open access Original research BMJ Open: first published as 10.1136/bmjopen-2019-035626 on 5 July 2020. Downloaded from Establishing a taxonomy of potential hazards associated with communicating medical science in the age of disinformation David Robert Grimes ,1,2 Laura J Brennan,3 Robert O'Connor4 To cite: Grimes DR, Brennan LJ, ABSTRACT Strengths and limitations of this study O'Connor R. Establishing a Objectives Disinformation on medical matters has taxonomy of potential hazards become an increasing public health concern. Public ► Individuals prominently involved in the communica- associated with communicating engagement by scientists, clinicians and patient advocates medical science in the age tion of medical science across different media were can contribute towards public understanding of medicine. of disinformation. BMJ Open surveyed to ascertain their experiences in public However, depth of feeling on many issues (notably 2020;10:e035626. doi:10.1136/ outreach. vaccination and cancer) can lead to adverse reactions for bmjopen-2019-035626 ► Participants were from around the world, but pre- those communicating medical science, including vexatious dominantly communicated in the English language. ► Prepublication history and interactions and targeted campaigns. Our objective in ► Self- selection bias in this survey is unavoidable, and additional material for this this work is to establish a taxonomy of common negative paper are available online. To findings cannot be taken as generalisable. experiences encountered by those communicating medical view these files, please visit ► Accordingly, survey results should only be taken as science, and suggest guidelines so that they may be the journal online (http:// dx. doi. indicative of the scope of the issue at this juncture. circumvented. org/ 10. 1136/ bmjopen- 2019- ► Much further research is needed to ascertain how Design We establish a taxonomy of the common 035626). the medical community can best act to counter negative experiences reported by those communicating the rise of medical disinformation while protecting Dr Laura J Brennan deceased on medical science, informed by surveying medical science practitioners. 20 March 2019. communicators with public platforms. Participants 142 prominent medical science Received 08 November 2019 communicators (defined as having >1000 Twitter followers http://bmjopen.bmj.com/ Revised 13 April 2020 Accepted 15 May 2020 and experience communicating medical science on social distrusted. Disinformation undermining and traditional media platforms) were invited to take part health science and evidence-based medi- in a survey, with 101 responses. cine has increased markedly in the era of Results 101 responses were analysed. Most participants social media, and dangerous misconcep- experienced abusive behaviour (91.9%), including tions abound, from perceived cancer risks persistent harassment (69.3%) and physical violence and 1 intimidation (5.9%). A substantial number (38.6%) received and ostensible cures to dangerous false- 2 vexatious complaints to their employers, professional hoods about vaccination. Improving public bodies or legal intimidation. The majority (62.4%) reported awareness and understanding of science and on September 27, 2021 by guest. Protected copyright. negative mental health sequelae due to public outreach, medicine is imperative if we are to maintain including depression, anxiety and stress. A significant continued progress in research endeavours, © Author(s) (or their minority (19.8%) were obligated to seek police advice and scientists, physicians and science commu- employer(s)) 2020. Re- use or legal counsel due to actions associated with their nicators have a crucial role to play in shaping permitted under CC BY. outreach work. While the majority targeted with vexatious public perceptions. Medical science is largely Published by BMJ. complaints felt supported by their employer/professional 1 publicly funded, and direct communication School of Physical Sciences, body, 32.4% reported neutral, poor or non- existent Dublin City University, Dublin, support. of research with the wider public can be Ireland extraordinarily beneficial on a societal level. 2 Conclusions Those engaging in public outreach of Department of Oncology, medical science are vulnerable to negative repercussions, Accordingly, public engagement has become University of Oxford, Oxford, and we suggest guidelines for professional bodies and a prerequisite for many funding bodies. Oxfordshire, UK 3Not applicable (patient organisations to remedy some of these impacts on front- Informed engagement by patient advocates advocate, deceased), Ennis, line members. and media figures too can have marked Munster, Ireland impact on public understanding of medicine, 4Irish Cancer Society, Dublin, empowering the public with facts with which Ireland INTRODUCTION to make important health decisions. Correspondence to Despite being fundamental to societal well- Improving public understanding of medical Dr David Robert Grimes; being, many aspects of medical science science is vital, as there many scenarios where davidrobert. grimes@ dcu. ie remain poorly understood and frequently public perception (or a vocal subset of that) Grimes DR, et al. BMJ Open 2020;10:e035626. doi:10.1136/bmjopen-2019-035626 1 Open access BMJ Open: first published as 10.1136/bmjopen-2019-035626 on 5 July 2020. Downloaded from is starkly at odds with scientific consensus. Frequently, To overcome this challenge, public outreach by scien- medical science contradicts a narrative strongly held tists, physicians and evidence-based health advocates by particular groups within the wider public. For our must be a crucial element to counter damaging fictions purposes, we define a ‘narrative’ as a world view or mindset and empower our community with evidence- based infor- shared by a given subgroup, which unifies that grouping. mation. A physician’s recommendation, for example, is Narratives are often articles of faith, empowerment or central to parental decisions to vaccinate.21 Addressing comfort, frequently unsupported by available evidence or patient concerns improves public health, and personal at odds with scientific consensus. For clarity, we concen- engagement by researchers and physicians can have a trate herein on situations where there is no reputable positive impact on public perception. Patient advocates evidence for a narrative, or where overwhelming scien- and media figures have substantial ability to shift public tific consensus is firmly against that viewpoint. perception; after Ireland saw human papillomavirus Misguided narratives can be supremely damaging, and (HPV) vaccine uptake drop from 87% to 51%, an alli- the antivaccine movement is perhaps the most obvious ance of healthcare professionals, researchers and patient example of this. Despite the life-saving efficacy of vaccina- advocates were instrumental in countering the dominant tion, opposition has existed since the time of Jenner.3 The falsehoods, and Ireland has seen a dramatic recovery rise of social media has seen significant propagation of anti- in vaccine uptake rates.22 To make inroads against vaccine narratives,4–6 driving uptake rates down and causing 7 8 the deluge of dubious health claims to which we are serious harm worldwide. In 2018, Europe saw the highest number of cases of measles in 20 years, numbering over 82 subjected, it is vital that scientists, clinicians and patient 525 cases with at least 72 deaths—over 15-fold the figures groups must be on the vanguard of efforts to counteract from 2016.9 Such is the extent of the problem that in 2019 misinformation. the WHO described vaccine hesitancy as a ‘Top ten threat Those engaging in public outreach, however, often to global health’.10 Exposure to antivaccine conspiracy encounter enmity for publicly advocating scientific theory is a leading factor in parental intention to vaccinate,8 evidence. Scientific consensus often runs contrary to and evidence to date suggests that the deluge of vaccine deeply held beliefs, leading to certain groups attempting disinformation across social media is extremely damaging to undermine legitimate public scientific discourse. Moti- to public understanding and health. vations for this are multifaceted, often depending on very Other strongly held narratives which clash with the specific circumstances. Conspiratorial thinking under- weight of available scientific evidence include the claims pins many narratives, and those attempting to commu- propounded by the antifluoride movement,11 12 the beliefs nication science are often vilified as ‘shills’, or agents of of the electromagnetic hypersensitivity movement13 and a nebulous ‘Big Pharma’. The phenomenon of identity 14 15 the narratives of complementary medicine. Patients protective cognition is also commonly encountered23 and http://bmjopen.bmj.com/ with cancer are especially vulnerable to misinformation, narrative believers frequently attacking those who cast 16 and frequently targeted by charlatans and the misguided. doubt on their beliefs. Even when handled with sympathy Consequences of this can be severe, with patients some- and compassion, professional and patient advocates times delaying or refusing conventional treatment. The net who challenge misconceptions can become targets for result of this is diminished survival statistics for those who certain individuals and groups. These negative responses engage with cancer pseudoscience, due to delayed treat- can range from verbal abuse
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