This patient represents those who have an established diagnosis but have more trust in other members of patient online communities and their own health education resources than in physicians.
The second patient represents someone who is a seeker, searching for answers to their own health problems, and is more open to various websites and alternative solutions that appear to provide them with those answers.
Patients pursue answers to health questions, practices and treatments that are not based on validated scientific evidence for many reasons. Patients may have concerns about specific treatments or products; they also may feel that medical research is biased or flawed because it tends to be intertwined with economic and political influences. Others may perceive medicine as exclusive, and sense a lack of accessibility to and a dismissive attitude toward fringe medicine practices. Some patients may be dissatisfied with the care they need. The huge cost of care, especially in the U.S., may drive a patient to explore alternatives to established medical recommendations.2
Perhaps more relevant to this discussion is the perception that medicine’s approach to care is less holistic and less likely to incorporate personalized experiences into population-level recommendations and evidence-based guidelines.1
We are most familiar with this last concept as it pertains to the COVID-19 pandemic. The frequent changes to recommendations for acute care COVID-19 treatments, prevention and vaccinations sowed the seeds for disinformation and engagement in fringe medicine. On the one hand, the medical establishment proposes claims or guidelines based on the best available evidence, which are then taken as truths by patients. On the other hand, these truths are prone to frequent revision, leading patients to confusion and doubt, and promoting the blurring of boundaries between mainstream medicine and alternatives.
Patients who have sought recommendations through less scientifically rigorous sources and received overtly erroneous health advice have, at times, experienced harm in the process. For example, a man died after he and his wife took chloroquine as a potential treatment for COVID-19. They had heard then-President Trump extol hydroxychloroquine and azithromycin as game changers in 2020. The formulation they took was one they had on their shelf for tending their koi aquarium and was not intended for human consumption.3
News stories about ivermectin as a potential treatment for COVID-19 highlight the confluent forces at play among science, evidence, uncertainty and messaging.
Rise of Social Media
The rise of social media has accelerated the shifting patient-clinician relationship and altered reliance on medical clinicians for information and decision making. Many patients, such as our patient from case two, engage with social media medical communities on Facebook, Twitter, YouTube or specialized platforms including Patients Like Me. These platforms are rich in shared information based on patient experience of disease, illnesses, treatments, clinicians and recovery. Each platform is unique, although complementary to more traditional health news outlets, such as health-focused magazines or websites with generic health-related information.
