A cross-sectional analysis of Facebook comments to study public perception of a new diagnostic test called the Cytosponge™

Summary

Social media provides a useful platform for informal discussions about healthcare. Acceptability is key to the uptake of diagnostic devices and this can be difficult to gauge from questionnaires and qualitative studies. The aim of this study was to investigate whether Facebook could be used to gauge public perception towards uptake of a new diagnostic test for Barrett’s esophagus called the Cytosponge™. We retrospectively reviewed Facebook comments relating to a video on the Cytosponge™. We categorised comments into: 1) Positive, 2) Negative, 3) Unknown and 4) Questions. Recurring themes that arose were compared to a qualitative study on the Cytosponge™. The video received 22.5 million views and 2837 comments within four months. Of these, 525 comments were positive, 215 were unknown, 179 were negative, 71 were questions, and 1847 were ‘Tagged’ comments. Among positive comments, recurrent themes were that it was innovative, could lead to early cancer-detection, and more favourable than endoscopy. Among negative comments, a recurring theme was concern about the risk of gagging and vomiting. Among ‘questions’, a recurring theme was related to the risk of Cytosponge™ detachment. We compared our analysis to a published qualitative study and found similar themes arose across both studies. Facebook provides a rich source of qualitative data which could be used to augment studies to gauge public perception towards a new diagnostic test.

Introduction

Barrett’s esophagus (BE) predisposes to esophageal adenocarcinoma (EAC), a highly malignant tumour with an estimated 5-year survival of only 17%.¹ There is currently no universal screening programme for EAC and its precursor BE and the majority of cases are undiagnosed. The current gold standard diagnostic test remains endoscopy with biopsies, which not only incurs a high cost, but also requires expertise and specialist equipment and carries a small risk of complication from sedation and from the procedure itself. ² More cost-effective and less-invasive screening tests are needed to address early detection of this pre-malignant lesion in the primary care setting.

Social media such as Facebook, Twitter and YouTube have become a common platform for informal communications and discussion about health-care. Facebook is currently the leading social media platform with more than two-billion active users.³ A defining feature of Facebook is the ‘Facebook Wall’– a publicly accessible domain resembling an online discussion board where users are able to directly communicate to other users, health organisations, public figures or news and media networks.⁴ Because of the unique nature of this direct communication, not surprisingly, Facebook has increasingly been used as a medium for health communication and promotion. For example, in the recent H1N1 outbreak, the United States Centre for Disease Control and Prevention utilised Facebook to increase awareness of the symptoms of influenza, and to promote timely vaccination.⁵ Although Facebook has been used to evaluate public interaction on breast cancer awareness⁴ and families affected by congenital disorders,⁶ its use to quickly and inexpensively gauge public opinion on a new diagnostic test has not been previously evaluated.

The Cytosponge™ is an innovative cell-sampling device which can be administered in the primary care setting, and when coupled with an immunohistochemical assay- TFF3, has shown to have good sensitivity and specificity for detecting BE (Figure 1).^7–9 A video of the Cytosponge™ was recently uploaded by an independent technology company onto Facebook and has attracted a lot of attention, with over 22.5 million views and over 2800 comments.¹⁰ The aim of this study was to investigate whether narratives from Facebook could be used as a platform to understand public perspective and barriers towards uptake of the Cytosponge™. We then compared our analysis to a qualitative study conducted on the Cytosponge™ to determine whether similar themes arose across both studies.

Methods

Data Collection

We retrospectively reviewed all comments in response to a Cytosponge™ video posted onto Facebook by Tech Insider UK- an online media company who publicise news relating to science and technology. The original Cytosponge™ video was produced by the University of Cambridge visual production team and was uploaded onto YouTube in July 2015. The video was subsequently picked up by Tech Insider UK and a re-produced version of the video was uploaded onto Facebook on 26^th April 2017.¹⁰ The upload of the video onto Facebook was not commissioned by the University of Cambridge and initiated solely by Tech Insider UK. The video was posted onto Facebook on 26^th April 2017 and all comments from the 26^th April to 18^th August 2017 were extracted for analysis ¹⁰. Non-English comments were translated to English using ‘Google Translate’ wherever possible.

Patients have been extensively involved in Cytosponge™ trials.^{8, 9} However, since this research took advantage of unbiased public reaction on social media without patient involvement, ethical approval was not required for this study.

Description of the Cytosponge™ and Facebook video

The video outlined the use of the Cytosponge™ in diagnosing BE and EAC, and a step-by-step illustration of the procedure was explained.¹⁰ Briefly, the video begins with a description of the Cytosponge™ which comprises of a compressed mesh within a gelatinous capsule, tethered to a string. Upon swallowing, the capsule migrates into the stomach and due to the warm and moist environment the gelatinous capsule dissolves within 5 minutes to release a spherical, compressed mesh. The string is then withdrawn, pulling the mesh with it and retrieving up to one-million superficial epithelial cells along the entire esophagus.¹¹ Immunohistochemistry for Trefoil Factor-3, a marker of BE, is then performed on paraffin-embedded cells and provides an objective marker with a binary readout (either positive or negative) when observed under light microscopy.⁷

Data Analysis

During data analysis, we employed the ‘grounded theory approach’, a systematic methodology often used in qualitative studies where data are collected and analysed without a pre-defined theory.^{12, 13} An advantage of this method is that it allows researchers to investigate public interaction and behaviour and to allow theories and ideas to unfold naturally. Following extraction of Facebook comments, we categorized comments into four categories: 1) Positive, 2) Negative, 3) Unknown and 4) Questions. Positive comments, negative comments and questions were further sub-categorised according to different themes that arose (Table 1). Comments were analysed in a non-mutually exclusive manner, in that comments could be categorized as both positive and negative should they contain information which crosses both domains. Similarly, comments which contained multiple positive points which met the criteria for different sub-categories were each considered individually. ‘Unknown’ comments were defined as comments which did not belong to either positive or negative categories and were excluded from analysis. Comments which were deemed ambiguous were discussed among the authors until a consensual agreement was achieved.

Table 1. Breakdown of ‘Positive’ comments from the Cytosponge™ video on Facebook.

Themes	Frequency (n)	Percent (%)
Favourable comment	235	44.8
Innovative or technological advancement	91	17.3
Willingness to have or enquiring about availability	63	12.0
Early detection/cancer prevention or potential to save lives	45	8.6
Less discomfort or more favourable than endoscopy	34	6.5
Simplicity or ease of use	15	2.9
Family or personal history of EAC	15	2.9
Less invasive than endoscopy	12	2.3
Cost-effective compared to endoscopy	7	1.3
Applicability to other medical conditions	6	1.1
Miscellaneous	2	0.4
Total	525	100.0

EAC; esophageal adenocarcinoma

Results

Cytosponge™ video

As of 18^th August 2017, the video has garnered 22,493,990 views, shared 291,953 times, liked 144,000 times and 2837 comments posted. Of the 2837 comments, 525 (18.5%) comments were categorized as ‘positive’, 179 (6.3%) were ‘negative’, 215 (7.6%) were ‘unknown’, 71 (2.5%) were ‘questions’ and 1847 (65.1%) were ‘tagged’ comments. Tagging refers to a feature of Facebook which involves attaching a friend’s name to a post to create a link to their Facebook profile. The ‘tagged’ friend will then be notified of the post and will be able to view it upon connecting to Facebook. Tagging allows rapid dissemination of information to other Facebook users; however, as ‘tagged’ comments provided limited information for analysis, these were excluded. ‘Unknown’ comments were also excluded from analysis.

The 525 positive comments were further sub-categorised according to themes that arose. Of these, 235 (44.8%) comments were ‘favourable comments’, defined as a generally positive comment but lacking specific details, such as:

‘Interesting’

‘Fantastic’

‘Amazing’

91 (17.3%) comments felt that the Cytosponge™ was an innovative discovery and included comments such as:

‘Great idea, I think it will help a lot of people’

‘Technology is advancing in good ways that would just be unheard of 20 years ago’

‘What a breakthrough!’

63 (12%) Facebook users were willing to undergo the procedure or were enquiring of the availability of the Cytosponge™. 45 (8.6%) Facecbook users felt that the Cytosponge™ can lead to early detection of cancer and save lives, for example:

‘My father died from oesophageal cancer in 2015. As it doesn't really show any symptoms until it is too late to treat it he was gone less than 8 weeks after diagnosis. Something so simple could help people get diagnosed earlier and increase the survival rates. Well done to the amazing people working hard every day to fight cancer in all its forms.’

This was an example of a comment which met the criteria for different sub-themes such as ‘Early detection/cancer prevention and the potential to save lives’, ‘Simplicity or ease of use’ and has a ‘Family or personal history of EAC’. 34 (6.5%) comments felt that the Cytosponge™ was more favourable than endoscopy and less uncomfortable. 15 (2.9%) Facebook users describes a personal or family history of EAC, while 12 (2.3%) and 7 (1.3%), respectively, felt that the Cytosponge™ was less invasive than endoscopy and more cost-effective. Full breakdown of positive comments and sub-themes are shown in Table 1.

There were 179 negative comments which were sub-categorised into 10 different themes. The most prevalent theme was the concern of the risk of gagging or vomiting, which accounted for 49 (27.4%) of ‘negative’ comments and included comments such as:

‘How do those people not gag when the sponge is coming up? Because I would probably throw up.’

‘That would make me gag.’

30 (16.8%) comments described the Cytosponge™ as uncomfortable or visually unattractive, respectively. 26 (14.5%) comments had a ‘negative perception’ of the Cytosponge™, defined as negative comments which lacked specific details. 10 (5.6%) comments were related to the risk of sponge detachment. These included comments such as:

‘I would be worried that the string would become detached from the sponge or a blockage somewhere along the way would prevent it from coming back up.’

‘How about if the string pops and that stays stuck in your throat then what? That’s not a good idea.’

8 (4.5%) comments were related to the potential harm that the Cytosponge™ could cause, and 6 (3.4%) comments deemed the Cytosponge™ less favourable than endoscopy. A full breakdown of negative comments and its various sub-themes are shown in Table 2.

Table 2. Breakdown of ‘Negative’ comments from the Cytosponge™ video on Facebook.

Themes	Frequency (n)	Percent (%)
Risk of gagging or vomiting	49	27.4
Uncomfortable procedure	30	16.8
Visually odd	30	16.8
Negative perception	26	14.5
Inaccurate media reporting	12	6.7
Concerns about sponge detachment	10	5.6
Potential harmfulness of the device (other than detachment)	8	4.5
Less favourable than endoscopy	6	3.4
Concerns about the side-effects of the capsule	1	0.6
Miscellaneous	7	3.9
Total	179	100.0

There were 71 comments which were posted as questions. The two most prevalent question were ‘what is the Cytosponge™ used for’ and ‘what if the string breaks?’ which accounted for 12 (16.9%) of all questions, respectively, and included comments such as:

‘What is this for?

‘I wonder what happens if the sponge comes off the string half way up the esophagus.’

What If the string snaps while on its way up?

11 (15.5%) comments were related to questions which enquired about the availability of the Cytosponge™, for example:

‘How can I get this sponge in India? Let me know the options.’

‘Is it available in Australia?’

7 (9.9%) and 6 (8.5%) of comments, respectively, were related to the effectiveness and the cost of the Cytosponge™. The full breakdown of the main themes from the different questions are summarised in Table 3.

Table 3. Breakdown of ‘Questions’ from the Cytosponge™ video on Facebook.

Themes	Frequency (n)	Percent (%)
What is the Cytosponge™ used for?	12	16.9
What if the string breaks?	12	16.9
Where can I get it?	11	15.5
What are the risks or side effects?	10	14.1
Is it effective?	7	9.9
How much does it cost?	6	8.5
What other condition can we use this for?	5	7.0
What is the sponge and the capsule made of?	4	5.6
Is it safe?	2	2.8
How does the string come back up?	1	1.4
How long does the procedure last?	1	1.4
Total	71	100.0

Comparison with Qualitative Study

We compared our results to a recently-published qualitative study on the Cytosponge™ where investigators conducted face-to-face interviews, focused groups and live-video demonstration of the Cytosponge™ on 33 participants.¹⁴ In that article, thematic analysis identified three recurring themes: 1) anticipated physical experience, 2) information preferences and 3) comparison with endoscopy (Table 4).¹⁴

Table 4. Comparison between themes explored in the Cytosponge™ qualitative study¹⁴ and the Facebook video of the Cytosponge™, ¹⁰.

Themes from Qualitative Study (Freeman et al)	Comparison to Facebook
Anticipated physical experience -Risk of gagging or vomiting -Risk of string detachment	Seen within ‘Negative comments’ and ‘Questions’ -27.4% were related to the concerns about the risk of gagging or vomiting. -16.9% of questions were related to concerns of Cytosponge string detachment
Information preferences -Purpose of Cytosponge™ -Association between GERD, BE and EAC -Side effects -Accuracy of Cytosponge™ test	Seen within ‘Questions’ category -16.9% of questions were related to utility of Cytosponge™ -Not frequently encountered -14.1 % of questions were related to concerns about the side effects of the procedure -Not frequently encountered
Comparison with endoscopy -Comfort and invasiveness -Cost-effectiveness	Seen within ‘Positive Comments’ -8.8% of ‘positive comments’ felt that the Cytosponge™ was less uncomfortable than endoscopy. -1.3% of ‘positive comments’ felt that the Cytosponge™ was more cost-effective than endoscopy.

GERD; Gastro-esophageal reflux disease; BE, Barrett’s esophagus; EAC, esophageal adenocarcinoma

Our analysis revealed that these three recurring themes were also seen in our study. The theme of ‘anticipated physical experience’ was defined as the experience patients were likely to experience when swallowing the Cytosponge™ and includes patients’ concern on the risk of gagging, vomiting and string detachment. These anticipated experiences were notably seen within the ‘negative’ comments category of which 49 (27.4%) of negative comments were related to concerns on the risk of gagging or vomiting. A second sub-theme within the ‘anticipated physical experience’ was related to the risk of sponge detachment. This too was reflected in our analysis of the ‘questions’ category which showed that concerns of Cytosponge™ was the most common recurring theme.¹⁴

The second theme that arose from the qualitative study by Freeman et al was about information preference, defined as ‘what information patients would like to receive if they were asked to undergo the Cytosponge™ test.’¹⁴ In that paper, patients desired information on: 1) association between gastro-esophageal reflux disease (GERD), BE and EAC, 2) information on the purpose of the Cytosponge™, 3) information on potential side-effects, and 4) accuracy of the test.¹⁴ Most of these enquiries were also seen in our ‘questions’ category of which, ‘what is the Cytosponge™ used for’ and ‘what are the risk and side-effects’ were frequently posted in Facebook. However, patient information on association between GERD, BE and EAC and accuracy of the test were not frequently encountered in Facebook.

Comparison with endoscopy formed the third recurring theme in the paper by Freeman et al where patients generally felt that the Cytosponge™ was associated with less discomfort, quicker and more cost-effective. In our analysis, 46 (8.8%) positive comments on Facebook felt that the Cytosponge™ was not as uncomfortable, and less invasive than endoscopy, however, only 7 (1.3%) alluded to the cost-effectiveness of the Cytosponge™.

Discussion

We showed that narratives of Facebook provide a rich source of qualitative data on a new diagnostic test such as the Cytosponge™. Our data showed that public perception of the Cytosponge™ was generally positive, with a favourable 3:1 ratio of positive to negative comments related to the Cytosponge™. After categorizing comments into positive, negative and questions, we identified recurring themes and compared them to a qualitative study on the Cytosponge™ published by Freeman et al.¹⁴ Our results showed that major themes that arose from that qualitative study were highly reflective to our Facebook analysis.¹⁴ The theme of ‘anticipated physical experience’ seen in the qualitative study was evident within ‘negative comments’ and ‘questions’ of which Facebook users were concerned about the risk of gagging or vomiting, and the risk of Cytosponge™ string detachment, respectively.¹⁴ The second theme that arose from the qualitative study was ‘information preference’. Among the four domains where patients desired additional information, two of them (purpose of the Cytosponge™, and side-effects) were frequently encountered within Facebook comments, where 16.9%, and 14.1% of ‘questions’, respectively, posted onto Facebook were addressing these sub-themes. Patient information on the association between GERD, BE and EAC, and accuracy of the test were not frequently seen on Facebook. This is likely because patients recruited into the qualitative study on the Cytosponge™ were patients with known GERD, and it would not be surprising for these patients to be concerned about their own risk of developing cancer.¹⁴ As the comments on Facebook were comments from the public, majority of which were unlikely to have had GERD, not surprisingly, these enquiries were not commonly encountered. The third recurring theme from the study by Freeman et al was the comparison between Cytosponge™ and endoscopy. Our previous analysis showed that the Cytosponge™ compared favourably to endoscopy in terms of comfort, invasiveness and cost-effectiveness.^{8, 9, 15}

In contrast to face-to-face qualitative research, data on Facebook provides an inexpensive and easy way to disseminate information rapidly. In addition, the opinions and comments from Facebook offers a broad diversity, both in terms of the large number of comments, as well as the diverse social-cultural background of Facebook users. Since the Cytosponge™ video was posted by Tech Insider UK, the video quickly became ‘viral’ and had garnered more than 22.5 million views within three months.¹⁰ This rapid dissemination of information, often described as a ‘snowballing effect’ would not be possible without the use of social media. Furthermore, the cost of uploading a video to Facebook is negligible, while a qualitative study often incurs significant costs and time. Another advantage of data from Facebook is that it provides first-person narratives which contains a depth of feeling which is often difficult to articulate in face-to-face communications.¹⁶ Further, the use of social media can also uncover the notion of ‘internet bravery’- a term used to describe comments made on the internet which would not be made if the speakers were identifiable. This is due to the relative anonymity provided on social media platforms. This was particularly evident within the ‘negative comments’ category where Facebook users were not afraid to voice their concerns over the potential risk of gagging or vomiting, risk of sponge detachment, odd appearance and potential harmfulness of the device. This information could benefit researchers as it allows these concerns to be pre-empted and addressed when designing information leaflets on the Cytosponge™ by including narratives from patients who had undergone the Cytosponge™ or statistics to reassure patients that the vomiting or gagging is an uncommon side-effect from the Cytosponge™. Despite the benefits of Facebook, we are not proposing that Facebook data be used to replace face-to-face qualitative research. However, we feel that qualitative data from Facebook could act as an adjunct to qualitative research to gauge public opinion towards a new diagnostic test.

Our study does have some limitations. Firstly, Facebook users are not an accurate representation of the general population as these users tend to be younger and better educated than non-users.¹⁷ Further, there is an unequal gender distribution with a slight predominance of male Facebook users compared to females (57% males vs 43% females, taking the United States as the sample population).¹⁸ Although male gender and age are known risk factors for EAC, men over 45 years of age only accounted for 10% of Facebook users.¹⁸ The predominance of younger males who use Facebook may not be the ideal comparison group when compared to the qualitative study by Freeman et al, which included 17/33 (51.5%) males aged 50-69 years which represents the target population at risk of EAC. Secondly, using Facebook data raises ethical considerations. For example, to what extent does using Facebook information breach confidentiality and should researchers attempt to personally contact all individuals who posted a Facebook comment to obtain informed consent? To answer these questions, it is important to clearly identify whether the information is public or private. In our study, it is reasonable to assume that Facebook users knowingly post comments on a public domain, therefore, consent to use these data were not required. However, this clear distinction may not always be evident in other scenarios.

Conclusion

We have shown that narratives of Facebook provide a rich source of qualitative data. Thematic analysis showed that similar themes arose across both Facebook data and qualitative research on the Cytosponge™. Facebook data has the added benefit of rapid information dissemination, incurs negligible cost, and these data could be used to gauge public perception towards a new diagnostic test such as the Cytosponge™.