In preparation for a training I’ll be giving this fall on using social media in national Tuberculosis (TB) programmes, I have been searching for examples of patient blogs to communicate about TB. I thought that there’d be at least a few different examples out there, but either there are not or maybe I’m just not using the correct search words (or there could of course also be an issue with language barriers).
The only real TB dedicated patient blog I have been able to find is an initiative by MSF called TB&Me. It consists of currently 27 personal blogs by current or past multidrug-resistant TB (MDR-TB) patients from all of the world. The blog, which started already in 2011, is meant as a collaborative blogging project where the patients write (if necessary with assistance) about their experiences of living with MDR-TB and the treatment that they receive, which can involve taking up to 20 pills a day for 24 months and suffering many painful side effects from the toxic drugs.
I know that there are other TB survivors that blog, but many of them are more focused on advocacy around TB rather than sharing their own patient experiences. This is for example the case of the this Romanian blog by Paula Rusu (a Romanian former TB patient and journalist).
Improving drug adherence
Intuitively it sounds like a good idea to have patients blog about their experiences, emotions and reflections. It provides an opportunity to add a personal perspective on the disease, which can be helpful to both the patient him or herself as well as other patients and relatives.
A qualitative research study of the TB&Me project published in PLOS One in 2014 found that the TB&Me blogging experience was useful for adherence to DR-TB treatment and viewed as supportive of the treatment-taking process by all bloggers and project staff, it provided support to patients (peer support, shared experience and reduction in isolation) and the blog gave the patients strength and voice. The authors conclude that “The TB&Me blog was seen to be associated with positive identified health and emotional benefits. Component 5 of the Stop TB Global Plan highlights the importance of empowering TB patients and communities. Blogging could be a useful tool to help achieve that ambition.”
Patient blogging is not new, but it’s not something that I have studied much before and I’m eager to learn more of the experiences from other disease groups. I believe there are many patient blogs related to chronic diseases like diabetes (a list of patient blogs on diabetes type 1 can be found here) and cancer, but it would be great to get some more insight into where to start and learn a bit more of also the potential negative sides of patient blogging, so please do share any insight you might have with me. Also how patient blogs could be part of broader communication and advocacy around TB. I’d love to get your insights!