Analysis of content and online public responses to media articles that raise awareness of the opt-out system of consent to organ donation in England

Abstract

BackgroundPreceded by a national media campaign, in May 2020, England switched to a soft opt-out system of organ donation which rests on the assumption that individuals meeting specific criteria have consented to organ donation unless they have expressed otherwise. We aimed to learn more about how the changes were communicated, how people responded and any discrepancies between key messages and how they were interpreted by the public.MethodsSummative content analysis of 286 stories and related reader-generated comments in leading UK online news sources (April 2019 to May 2021). Further detailed thematic analysis of 21 articles with reader-generated content, complemented by thematic content analysis coding of all 286 stories.ResultsMost media coverage on both organ donation and the law change was positive, with little variation over time or between publications. The importance of organ donation, benefits of the law change, and emotive stories (often involving children) of those who had donated an organ described as “superheroes” or those who had received organs as benefiting from a “miracle” were frequently cited. In contrast, reader-generated comments were markedly more negative, for example, focusing on loss of individual freedom and lack of trust in the organ donation system. Commentators wished to be able to choose who their organs were donated to, were dismissive and blaming towards minority ethnic groups, including undermining legitimate worries about the compatibility of organ donation with religious beliefs and end of life cultural norms, understanding and acceptance of brain-stem death and systemic racism. Misinformation including use of inflammatory language was common.ConclusionThe portrayal of donors and recipients as extraordinary is unlikely to help to normalise organ donation. Undermining legitimate concerns, in particular those from ethnic minorities, can alienate and encourage harmful misinformation in underrepresented groups. The discrepancies between the tone of the articles and the readers comments suggests a lack of trust across the public, health, policy and media outlets. Easily accessible, ongoing and tailored sources are needed to mitigate misinformation and disinformation and ensure key messages are better understood and accepted in order to realise the ambitions of soft opt-out organ donation policies.

“I am in favour of organ donation, but I feel you should opt-in”—qualitative analysis of the #options 2020 survey free-text responses from NHS staff toward opt-out organ donation legislation in England

“…Our findings further coincide with that of previous literature, highlighting views suggesting that the optout system is a move towards an authoritarian system, illustrating the commercialisation of organs, and a system that is open abuse and mistakes [10][11][12][27][28][29]. Healthcare staff require reassurance that the population, specifically the hard-to-reach groups like the elderly and homeless, have access to information and systems in order to be able to make an informed decision [30,31].…”

“…Some responses also reflected medical mistrust concerns of the general public [13,14,16] as well as expressing a fear of losing trust with the public [9,11,16], as found within previous work. Additional research articles raising awareness of the opt-out system in England suggest that despite publicising the change with carefully crafted positive messaging, negative views and attitudes are likely to influence interpretation leading to an increase in misinformation [28]. Targeted, evidence-based interventions and campaigns that address misinformation, particularly in sub-groups like ethnic minorities, is likely to provide reassurance to NHS staff and the general public, as well as providing reliable resources of information [28].…”

“…Both healthcare staff and the public would benefit from educational materials and interventions to address attitudes towards organ donation [19,28,33]. This would assist in correcting misconceptions and misunderstandings held by NHS staff, specifically those who support and work with organ donors and recipients.…”