Wake up, and smell the Covfefe

The end-of-life trajectory of the late Dr. Kate Granger MBE, analysed by Joanna Taylor and Claudia Pagliari in a paper recently published in BMC Palliative Care, provides a unique insight into her psycho-social state during the progression of her disease. In this blog, one of the article reviewers, Dr Mark Taubert, reflects on the potential of social media as a tool to study individual experiences such as those recorded by Dr. Granger, their potential to improve palliative and supportive care standards, and the merit of n=1 studies.

Meaning. True meaning. And Covfefe. Capturing the words we say or write down and how they fit in with our everyday lived experience is changing. A long time ago, I learned that the lower the ‘n’ value (the number of subjects in a given study or analysis), the worse the likelihood of reproducibility, and that n=1 studies are meaningless, instantly dismissible. Don’t even read on if you see ‘n=1’, you are wasting your time. Whilst this holds for most types of research, what if n=1 is an interview, or a narrative account that makes history or closely aligns with our own or even wider societal experiences, and how we make sense of the world? What if it qualitatively analyses and interprets each word, and deduces new meaning or future research questions and trends? The Frost-Nixon interviews are a series of n=1, for instance, but every line, every word spoken has been analyzed and transcribed for posterity, and remains relevant to this day. What if it is a letter of note, from one person to another, that affects us all? Or a blog, or a podcast, or a video?

“We’ve been living with the reality of cancer in our lives for nearly 5 years…it becomes the new normal”
Dr. Kate Granger MBE

The article by Claudia Pagliari and Joanna Taylor published in BMC Palliative Care is not an interview, but a transcript of Twitter postings by the late Dr Kate Granger. Kate and I worked on a few projects together, after meeting on Twitter, and I have also had the good fortune to meet her husband Chris Pointon, who carries on with the great work around the #HelloMyNameIs hashtag. So many people reacted to Kate’s tweets, which draw on her experiences as a doctor, and what she made of the world of patients when she entered the realm of end of life care. I challenge you to look at her Twitter page and not glean some new understanding, or connect with her perspectives and points of view. Her quest for respect and true shared decision making is remarkable and tenacious.

This study looks at each Tweet, categorizes it into distinct themes and analyses content (qualitative content analysis) in the last 6 months of Kate’s life and relates it to end-of-life care trajectories. It also explores and discusses the value of social media data for understanding patients’ personal experiences and coping strategies. The authors offer several apologies for the fact this is a study of one, including a lengthy ‘Limitations’ section, that reflects perhaps research’s ‘quick-to-point-the-finger’ attitude towards this newer type of analysis. The world of social media is raw, unfiltered, impolite, sometimes hysterical, hence very different to the more traditional, carefully prepared and audio-recorded qualitative interview. Researchers can find some really fascinating insights here, and should not let a lack of imagination or experience among their peers stop them from stepping into the fray.

“I’m exhausted of being ‘brave’, the expectation that I’m ‘Dr Kate Granger’ and therefore can cope with anything. I can’t…”
Dr. Kate Granger MBE

The result is a window into an individual’s experiences, including at highly emotional and sensitive stages, something that is not afforded to research in many other settings. One of my first queries was the issue of consent, but the authors had talked to her husband Chris and asked him permission to use Kate’s openly available Twitter data. I know of social media research where this has not happened, and ethically it raises an issue of consent for me. Interestingly, some researchers I discuss this with seem to believe that any openly available social media data is ‘fair research game’. Many ethics committees I have talked to remain under prepared for this important question.

Chris Pointon agreed to this work, knowing that Kate would have been honored and humbled. Kate’s immense drive and determination live on, and you will see Tweets written in pain, written in awe. Could this very special n=1 become part of a social media narrative analysis trend, that we are only beginning to understand? Future versions of already existing Artificial Intelligence algorithms, like Deep Learning, may swiftly data-mine thousands, millions, billions of such rich thematic sentences to help generate and aid actual real life decision support for palliative and end of life care. We are seeing a significant change in the way history is noted down. The way past experience is used to inform decision parameters for future generations, will likely take into account every single sentence that has ever been written on Twitter and indeed the internet. Whether this is your idea of a nightmare, or you see this as an immense opportunity, will continue to divide opinion for some time.


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