To investigate the extent and purpose of radiotherapyrelated messages on the social networking site Twitter. Improving patient experience remains a major NHS policy issue in the UK.1 The vision for achieving world-class cancer outcomes set out in the Five Year Forward View, has pledged to put patient experience on an equal footing with patient outcomes.2 The importance of exploiting the digital revolution for the benefit of patients with cancer is key to delivering this strategy. One such digital platform is Twitter. It is the third most popular social networking site (SNS) after Facebook and YouTube3 and has 400 million active users worldwide, 15 million accounts in the UK alone.4 Twitter presents an extensive source of real-time, first-hand accounts relating to healthcare topics like radiotherapy.
This was a cross-sectional observational study of twitter data relating to radiotherapy. A random date generator was used to select 31 days from 2016. Using the built-in twitter search function, public tweets containing the keyword ‘radiotherapy’ from each of the selected days were captured as a dataset using the web extension ‘NCapture’ and then imported into QSR NVivo. Snowball sampling was used to include tweets of users interacting with the original sampled tweet to help provide necessary context. Categorical data (type of account holder, type of tweet) was manually extracted from the dataset and transcribed into an Excel database for descriptive analysis. To explore the topics of discussion and prominent issues, a purposive subsample of tweets authored by patients and their friends and family was extracted from the original sample for qualitative analysis.
Radiotherapy Research Advanced Practitioner University Hospital Southampton
[email protected] @kimbomeek
Capture and analyse 2000-3000 Tweets relating to radiotherapy Describe the population engaging with Twitter about radiotherapy Determine the proportion of Tweets that are generated by patients, healthcare practitioners, and healthcare organisations Identify content that conveys something about how and why Twitter is being used in relation to radiotherapy. Explore the topics of discussion and questions raised, to understand the prominent issues posted on Twitter in relation to radiotherapy
2746 tweets containing the word radiotherapy were captured from twitter over 31 randomly selected days of 2016. There were 487 individual contributors from 45 countries. On average, there were 89 tweets per day from 68 contributors. Tweets including a link to a research publication were the most frequently occurring (n=954), followed by a quoted tweet or retweet (n=539), followed by an original tweet (n=438). There were 375 duplicate tweets and 65 that were categorised as ‘junk’. There was an upward trend of activity over the course of 2016, with the proportion of duplicate and junk tweets decreasing. Figure 1.
A subsample of 442 tweets, comprising of personal experience, opinion or interest authored by people affected by cancer were extracted for qualitative analysis. Six themes were developed from the data using thematic analysis informed by Braun and Clarke.5
Experience of radiotherapy Before radiotherapy: Decisions and anxiety During radiotherapy: physical and emotional effort After radiotherapy: moving forward with some anxiety
Expression of needs and emotions Patients expressing gratitude Loved ones expressing pride (but feeling helpless) Seeking support | offering support
The peak-tweettime corresponds to a press release of the results of the Convert clinical trial by Cancer Research UK6 and subsequent presentation of results at the UKRO conference in June 2016. See fig. 1.
“Busy day tomorrow, big decision to make by Wednesday, major operation or Radiotherapy with Chemotherapy?” “Starting to freak out a little about my initial radiotherapy appointment tomorrow. Nobody has really told me what to expect” “Running around cleaning the house because I'm stressing about my radiotherapy starting today”
“Has officially finished #radiotherapy. I'm so happy feel like I could cry a little. 6 weeks of high of high dose radiotherapy done!” “So incredibly proud of my Grandpa for completing both his chemotherapy and radiotherapy treatment” “Seeing my nanna laugh and smile now all her chemo and radiotherapy is over is the best feeling!! So proud of her” “Last day of radiotherapy tomorrow. So proud of my beautiful wife.”
The non-UK data revealed the most prolific contributors were academic resources accounts suggesting a greater research activity outside of the UK. See fig. 2
“Had my last radiotherapy treatment yesterday! Many thanks and deep respect for everyone at the [radiotherapy department name]!” “I don't know what to buy for the radiotherapy staff. Like what do you buy for people who’ve saved your life”
“Two years on and my neck is still itchy from radiotherapy. Aqueous cream is all very well, but is there something better?” “hey twitter, any practical advice for feeling sick due to radiotherapy?”
“Chances of this type of tumour coming back again after radiotherapy are slim. I worry anyway.” “isn't it daft? Once you've had cancer you are never free of fear are you?” “Positive happy thoughts needed today - starting Radiotherapy this afternoon as cancer has now hit the brain” “compared to chemo, [radiotherapy] was really easy and quite painless. Best wishes to you for your treatment”
Figure 2.
Healthcare professionals are contributing significantly to the radiotherapy conversation on Twitter unlike healthcare organisations. Of interest, there was little evidence of 2-way dialogue between healthcare professionals and patients suggests some anxiety around professionalism in the digital space. See fig. 3.
References: 1 NHS England. The Five Year Forward View.
2014 Available from: https://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf [accessed 21 May 2016] 2 NHS England. Achieving world class cancer outcomes: Taking the Strategy Forward. National Cancer Transformation Board. 2016 Available from: https://www.england.nhs.uk/cancer/strategy/ [accessed 10 June 2016] 3 eBizMBA. Top 15 most popular social networking sites. April 2017. 2017. Available from: http://www.ebizmba.com/articles/social-networking-websites [accessed 9 April 2017] 4 Statista; The Statistics Portal: Twitter: Number of monthly active users 2010-2016; 2016. Statista Inc. Available from: http://www.statista.com/statistics/282087/number-of-monthlyactive-twitter-users/ [accessed 15 June 2016] 5 Braun V and Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2):77-101 6 Cancer Research UK. Twice a day radiotherapy halves treatment time and is equally good at treating small cell lung cancer. Cancer Research UK; 2016. Available from: http://www.cancerresearchuk.org/about-us/cancer-news/press-release/2016-06-05-twice-a-day-radiotherapy-halves-treatment-time-and-is-equally-good-at-treating-small-cell-lung [accessed: 8 June 2016]
Kim Meeking is funded by the National Institute for Health Research and Health Education England. This article discusses independent research funded by these organisations. The views expressed are those of the author and not necessarily those of the NHS, the NIHR or the Department of Health.
Figure 3.
“I feel like im jinxed. Radiotherapy put back one day. Please i just want to get it over & done with.” “Week one of radiotherapy done and dusted! Two to go!” “Three weeks into radiotherapy and it's not the easy ride I'd hoped for.”
To the authors knowledge, this was the first internet-based research with a radiotherapy focus and the first qualitative exploration of cancer related tweets. This research has shown that radiotherapy patients tweet about their experience and from the proportion of data pertaining to patients seeking support, this research suggests that there may be an unmet information need. Through the volume of tweets expressing gratitude, it is clear that radiographers are key to creating a positive patient experience, however, no evidence of 2-way dialogue on twitter, and limited presence of radiotherapy-related healthcare organisations supports that there is some way to go before realising the great potential for collaboration in the digital space.
