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Editorial: palliative YouTube- the challenging task of inclusion criteria and content critique [Editorial]

Taubert, Mark 2019. Editorial: palliative YouTube- the challenging task of inclusion criteria and content critique [Editorial]. Journal of Palliative Medicine 22 (12) , pp. 1496-1497. 10.1089/jpm.2019.0386

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YouTube is used daily on the wards of the cancer centre I work in. Staff and patients alike use it for entertainment and for information. Our hospital has its own YouTube channel. In their review article “YouTube Videos as a Source of Palliative Care Education,” Liu et al.1 draw attention to an education resource that is accessed with increasing frequency worldwide: Internet video channels, and in particular YouTube. The authors ask the question on whether individuals who want further information on palliative care can find accurate descriptions on YouTube. This is an increasingly important question to ask, given how many individuals now use online video resources to learn and inform themselves, especially in health care and the authors are to be commended on their foray into this field. They asked: Is palliative care portrayed accurately, or not? Keyword search and snowball methods were used to identify palliative care information videos on YouTube. A structured data collection protocol was developed to record characteristics of each video that met inclusion criteria. Descriptive analysis was used to describe the video features; logistic regression was conducted to determine the association between video characteristics and number of views per day. The researchers screened hundreds of videos within the search restriction of 500 that YouTube sets. They included videos with 250 or more views that were in English, uploaded within the past 10 years, 6 minutes or less in duration, pertaining to palliative care and targeted at what they termed “general consumers” (patients, family members, or caregivers). They excluded videos that focused exclusively on nonpalliative care program-specific content (e.g., hospice care only and advance care planning) and pediatric palliative care. They also excluded videos that were not relevant to U.S. consumers, but did not go into detail as to what this meant. Six minutes was chosen as a cutoff point stating that one study had reported that videos of six minutes or less were most frequently watched to completion, compared with longer videos. However, on checking the reference they put forward for this, it turns out to be a blog post ( from 2013, which writes about preliminary results. Referencing the full study, if indeed it has been published since, would be essential. It is within these inclusion and exclusion criteria for online videos that further scrutiny is required, in my view. The authors have done much to attempt to stay in line with other studies. Yet the evidence for stating that six minutes or less is a proxy for quality is thin and requires future examination: although researchers frequently critique video metadata such as adequate length, there are no evidence-based justifications on why these features can be used as quality measures. These measures may be considered as heuristics to determine the likelihood that these videos will be viewed by “consumers,” but really not as a substitute for quality. Videos with high-quality content may, therefore, be dismissed as “poor-quality material” if they are 10 minutes in length. Similarly, videos with poor educational or misleading content, that hit the “6 minutes or less mark,” may be misinterpreted as good-quality videos or, as in this study, pass the initial (and questionable) inclusion criteria test over perhaps, a very useful 7 minute video. This is of particular relevance to palliative care, which relies sometimes on longer discourse and explanation, to reassure patients and carers. The authors are to be commended that they acknowledge this as a limitation, and perhaps may wish to conduct further research into this proxy inclusion/exclusion measure. Selecting and prioritizing videos with minimum hit counts, as was done in this study, is also problematic, because good-quality videos may not have accrued all that many hits. A study in Resuscitation journal showed that cardiopulmonary resuscitation (CPR) videos judged to be of high quality by experts, often did not have high hits on YouTube.2 Finally, the authors state that it is erroneous to associate palliative care with the end of life, and that they downgraded videos that made such an assumption as low quality. In the United States, the two terms “palliative care” and “hospice,” have different connotations to the rest of the world, and this would be worth explaining for international audiences. But in fact many would argue with the appropriation of the word palliative as being so exclusive: yes, palliative care is about more than end-of-life care; however, this aspect remains a very large component part of it, and always will. Palliative care cannot become yet another death-denying specialty. Hence, talking about “consumers” being reluctant to engage because of such an association merely fuels a more death-defying narrative and culture. Perhaps this represents to some extent the recent debate between the U.S.-based International Association for Hospice and Palliative Care's definition,3 versus the definition favored by the European Association for Palliative Care4 on what palliative care actually is. The European and worldwide models of palliative care are still working off a definition as set out by the WHO, which certainly does include end-of-life care as one of its core elements. Hence the critique that the researchers leveled at the videos they reviewed by labeling them poor-quality videos whenever they discussed end-of-life care within them would not be applied in many other countries across the world. Such a critique would then also need to be leveled at the dictionary definition of palliative care. Finally, an interesting observation from this article is the lack of diversity of palliative care YouTube video protagonists, and this warrants further thought and discussion.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Publisher: Mary Ann Liebert
ISSN: 1096-6218
Last Modified: 11 Dec 2019 12:30

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