Editor's note: Anna Shevalova is head of Bazis Health within research agency Bazis. Katharina Gancarczyk is project manager at Bazis Health.
Virtual patient communities provide people a digital space to interact and discuss their questions, fears and anxieties around various medical issues. They’re a place to learn, educate others and understand shared experiences.
For health care researchers, they serve as a goldmine of useful data. They are full of great insights about patients, diseases and medical cultures. In an effort to understand similarities and differences across different patient communities, our team read through thousands of posts. Our core question was this: What can we learn about the conditions and support systems available to patients by studying virtual patient communities across different countries?
First though, we’d like to share a few posts from virtual patient communities (VPCs) that show just how insightful they can be.
Mary is terrified of needles but finally decides to go ahead with her in vitro fertilization (IVF). In February, she writes an emotional post asking “What if it doesn’t work? What if it DOES work? Why does it have to be so difficult?” This shows the uncertainty she feels about all the pending procedures.
Jane has had Type 1 diabetes for five years now. She has a long history struggling with her self-esteem and mental health. Despite that, she encourages others: “I want other people to know they are not alone in this and that you shouldn’t feel ashamed that this is happening in your life.” She shares her experience with others, while giving lifestyle recommendations.
Layla is worried about her 7-year-old son with autism spectrum disorder (ASD). He has trouble with some everyday tasks such as using public toilets. She writes, “He can easily get distracted and doesn’t always know what to do if something unexpected happens, such as running ou...