This MS Blog has been around since 2009, started by Prof G. But he isn’t in charge of the blog, he is one of many contributors. As of May 2021, there were over 9,200 published posts. Each month, the website sees 50% new and 50% returning visitors, with over 88,000 page views a month. Most readers are from the UK, US, Canada and across Europe.
In April, the blog went through an “Existential Crisis” following a recent complaint about one of Mouse Doctor’s posts to which he issued an apology. This wasn’t the blog’s first crisis or complaint. Prof G reflected on the role of social media, responsibility for the blog’s content and the future of the blog. He posed the following questions to you the readers: whether the blog should have a board of editors to manage the content, whether individual bloggers should be censored or banned, or whether the blog should be closed down altogether.
And you responded, with the post receiving 90 comments. As a qualitative researcher, I analysed these comments for common themes. All comments were positive about the blog and wanted it to continue, most people liked the current format and didn’t want it to change. You didn’t want a board of editors or for bloggers to be censored. You also made suggestions for the blog moving forward. The blog has been renamed “The MS Blog”, authors will continue to use the disclaimer and be more considerate of their content before posting. For now, the blog will continue and will be open to ways to improve its content.
NVivo 12, a qualitative data analysis software, was used to code and analyse these comments to look for common themes. I uploaded all the comments into NVivo and then went through each comment to identify similar wording, phrases, concepts and themes.
This post received a total of 90 free-text comments from blog readers and contributors. Of these 90 comments, 79 were original comments, that is not replies to already posted comments. Thirteen of the 79 comments were posted anonymously. As these were posted comments, I did not contact individuals for further information or clarification regarding their comments.
The majority of commentors self-identified as people living with MS, or their family/carers. Five people mentioned living outside of the UK.
NVivo software generated a word cloud containing the 50 most frequent words written in the comments (Figure 1). The larger the word size means the more frequently it was used.
All comments spoke positively about their experience with the blog and were in favour of it continuing. Across the comments I identified four concepts involving: 1) the blog’s content, 2) the blog’s role, 3) the blog’s impact and 4) people’s recommendations about the blog moving forward (Table 1).
|1. Blog content||Important/valuable resource||Up-to date information, read daily, honesty, humour|
|Provides answers to questions||Not enough time during appointments, helps to prepare for appointments|
|Help with treatment||Accessing treatment, making informed decisions about treatment|
|Access to research||Makes research understandable|
|Only/best source of information||Nothing comparable online|
|Don’t understand all information||Some information is too complex or clinical, but learning a lot/doesn’t matter|
|2. Blog role||Blog is an open forum||Shouldn’t be censored, needs to be independent, unfiltered content|
|Provides challenge||Challenges conventional dogma, stimulates debate, is critical, learn to ask the right questions|
|Sharing knowledge||Support from other blog readers, learn from other questions asked|
|3. Blog impact||MS community||Give patients agency over MS, is a lifeline, feel listened to|
|Personal impact||Increased knowledge, helps with lifestyle choices, helps with treatment, sadness/sense of loss if blog closes, appreciation for blog + team, blog is a coping strategy to deal with MS|
|4. Recommendations||Fee paying site||Make blog membership based|
|Contributors self-censor||Think before submitting, required time period before submitting, quality criteria for posts|
|Re-brand blog||Non-Barts affiliation|
|No change||Like current format, don’t want board of editors|
|More moderation||Remove option to comment, formal guidelines|
|Keep disclaimer||Disclaimer is sufficient|
Once a piece of information is submitted to the digital world, it is impossible to erase its digital footprint and any consequences. Evidently, not everyone is positive or satisfied with the blog and its contents given the complaints it has received over the years. However, this was not reflected in the posted comments.
How much is someone able to feely speak their mind on social media, even with a disclaimer? Is citing independence from professional and educational affiliations sufficient? It is clear from blog readers’ responses that they had a need for the blog and a desire for it to continue, and in its current format. They were not in favour of having a board of editors, or for bloggers to be censored. People liked the honesty and challenge of the information presented in posts. Not everyone understood or agreed with all the information presented, and the blog addressed difficult realities about MS. The blog has been a valuable resource to help people manage their disease and treatment, while accessing current research. One of the biggest appeals of the blog was the information it presented and contributors’ opinions. This made the blog unique and set it apart from other online information sources.
The blog has had a positive impact on the wider MS community and individually. People were saddened at the thought of it not continuing and no longer having access to information on the blog. They offered suggestions on how to improve the blog, including blog contributors being more thoughtful about the content of posts before submitting them. What does self-censorship look like in practice?
These comments were analysed in isolation in response to a blog post questioning whether the long-standing MS blog should change its format or no longer operate. The purpose of this analysis was not to look for positive and/or negative feedback about the blog, but to understand people’s responses to the idea of having the MS blog altered or removed. Therefore, the analysis was limited with the data collection methodology being based on single stand-alone comments without any further follow up or clarification.
It is also important to consider any biases. For example, those who read the blog are positively engaged with the blog, therefore may post more positive comments. People with negative feelings towards the blog may not feel comfortable or able to comment negatively on a public forum. As all comments posted were positive and in favour of the blog, it is evident this was not the forum or opportunity to express dissenting voices.
The questions raised by Prof G in his blog post did not ask how the blog could be improved, or for negative feedback but were specifically around who is responsible for the blog and how it should be managed.
While acknowledging the limitations to this study, this blog post received a high number of comments compared to other daily posts. Some posts were extremely descriptive and shared personal experiences of living with MS, and how the blog has helped them to understand and live with MS. The content of the comments, in addition to the analytics of the monthly visitors to the website, indicate that there are many people who interact and engage with the blog on a regular basis. However, the number of comments only represent a small percentage of the blog’s total readership.
Disclaimer: Please note that the opinions expressed here are those of the author and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
Heather Mah is a PhD researcher at the Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry at Queen Mary University London exploring the experiences of people with MS and healthcare professionals involved with Patient and Public Involvement (PPI).