Social media has become toxic. Maybe it always was. But for some communities, particularly in healthcare, it’s a godsend.
About a decade ago, I started mapping social media voices across dozens of diseases.
Remember hashtags?
At the time, these communities organized themselves around hashtags. Hashtags allowed people to find what others were saying about living with a disease or discuss the latest therapeutic advances. The average user would not see this unless they intentionally followed the top posters in these communities. These hidden groups included hundreds or even thousands of patients, caregivers, researchers, and clinicians, openly conversing yet invisible unless you actively sought them out.
The algorithm will see you now…
Today, algorithms ensure that you never see this information unless you actively seek it out and engage with the content. Over the years, the communities have migrated to different channels. Blogs, Twitter, Instagram, YouTube, Patient forums, Facebook, TikTok, and (my personal favorite) Reddit, which has hundreds of disease-specific subreddits.
If you’re thinking, “Hmm, sounds like a goldmine for AI,” you’re absolutely right. You can already ask Perplexity or ChatGPT about a specific condition or symptoms and receive answers pulled from Reddit discussions and patient blogs. Combined with scientific evidence from peer-reviewed publications and healthcare data sources, AI has become an incredible resource for clinicians and patients alike.
But just as ten years ago, a vital element is still missing –> the patients themselves.
Only patients, the individuals behind the social posts, the moderators of these communities, and the experts in lived experiences, can turn what is ultimately secondary data into deep insights and solutions. I call them patient experts, but it’s an imperfect term. They’re essentially subject matter experts, opinion leaders, influencers, and guides to the patient experience.
In designing solutions for healthcare, these experts are must-haves. Sure, you can ask ChatGPT for what the data means and how to design your clinical trial, but wouldn’t you rather have a knowledgeable guide who brings experience beyond the text and numbers of disease management and therapeutics?
You need somebody who has walked in the shoes of a diagnosis, interacted with the healthcare system, conversed with other patients and clinicians, weighed the risks against the benefits, and experienced the range of emotions that comes with being human and being a patient.
All patient advocates and experts get this. It‘s why the human still is (and always will be) essential in designing health solutions.
#patientvoice #digitalhealth #patientinsight