Patients have a huge depth of knowledge which is largely untapped by the medical community and researchers. This is particularly relevant for people suffering from chronic disorders, most of whom have complex multiple health issues, which no single General Practitioner or Specialist can hope to fully understand.
In the 30 years that I have managed various related chronic disorders, I know my condition very well: I have learnt what aggravates my symptoms and what seems to increase my well-being. My insights are not clinically tested and therefore will never be recommended by a medical doctor. I have little opportunity to share this knowledge and exchange with other patients, who all have similar experiences, or with health carers who might learn from my experiences too.
Thus, patient knowledge is unused, which may lead to lost or misguided research opportunities, non- or misdiagnosis, lack of or inappropriate treatment, and thus unnecessary patient suffering and high costs for society.
Many patients with chronic diseases search for better understanding of their conditions and alternative therapies. As a result, patients like me are increasingly exposed to misinformation, quackery and unconventional therapies, which are often useless, expensive and possibly even harmful. Through the internet, this information is often even targeted at us.
How to generate reliable medical information and provide care to patients, which integrates the huge untapped knowledge of patients themselves, but is trustworthy and protects patients’ rights to privacy?
Patients, Communication specialists, Legal experts, Medical experts