Editor's note: Anna Shevalova is healthcare team lead at Bazis Health. She can be reached at email@example.com. Ekaterina Nemenko is a project manager at Bazis Health. The authors express special thanks to Tatiana Barakshina for her mentorship and also wish to thank Archana Ramakrishna, Bob Spoerl and Vlad Churkin for their contributions to the article.
Our team has spent several years working closely with diverse patient organizations. It has brought us to an understanding useful for the entire health care market research industry: getting to know these communities and learning how to best access them can unlock valuable insights for health care research.
Our article in the November 2020 issue of Quirk’s (“Searching for a common language - Learning from virtual patient communities across the globe”) provided an overview of virtual patient communities and what researchers can learn from them. We decided to build on that research and take it a step further.
First, we tried to explain the difference between various patient communities and conducted a series of in-depth interviews with representatives of patient communities focused on Duchenne muscular dystrophy (DMD) across different countries. DMD is a rare disease that impacts children – primarily young boys – and there is limited medical understanding of it. As a result, it is active with communities of parents seeking answers for their sons on how to help improve their diagnosis.
Our initial hypothesis was that there is a country-specific difference between these DMD communities or at least a difference in terms of stage of development. But the more data we gathered, the better we could see that there is a distinct type of community that we later called “newly formed” that transcends countries and cultural differences. Although the term newly formed refers to a stage of development, our research revealed this type of community is n...