See also Expert patients. E-patients – (Wikipedia) use internet on behalf of themselves or others to get information about medical conditions. Tom Ferguson white paper.
- E-patients are valuable healthcare resources, and should be recognized as such.
- Empowerment is trickier than you might think. Knowledge may increase but improvements in anxiety, self efficacy, changes in behaviour do not always follow. Patients often know more than doctors realize, they often want to know about things doctors don’t have the answers to (or would avoid answering), and they often want to pass things on to other patients or give feedback to their doctors [Diana Forsythe, medical anthropologist].
- Patients can quickly know more about a condition than their doctor.
- Hazards of imperfect online health information prob exaggerated. Cf medical errors!
- Wherever possible, healthcare should be provided on patient’s “turf”
- Clinicians can no longer go it alone
- The most effective way of improving health care is collaboratively
In the outside world, a diagnosis (esp a rare one) can seem like a world upturning misfortune that sets you apart. Online, it is a badge of honour that connects everyone together.
Angela Coulter – paternalism in health care – clinicians underestimate how intimidating the clinical encounter is, patients fear offending their clinician if they assert themselves or offer an agenda. Clinicians are often unaware of the constraints that prevent patients asking questions in clinic. Clinicians often believe patients need to be protected from the truth eg uncertainties, bad news. Patients can often be left feeling inept, diminishing their sense of control. Paternalistic clinicians often seen as unsympathetic or arrogant, refusing to accept ideas or suggestions.
- What do you want to make sure we discuss today?
- What needs to happen today to make this visit feel successful?
Patient feedback – can sometimes lead to poor morale – positives need to be celebrated. Confidentiality must be assured for feedback to be meaningful.