MPNEsupport Org 802492-1069, Sweden
Melanoma Patient Network Europe
Trustworthy Medical Information is critical for Melanoma patients as survival continues to depend on it. This applies both to written and spoken information.
Medical Information for patient needs to be accurate. As therapeutic progress can be fast, validity means that medical information needs to bedated and reviewed regularly. Outdated information is no longer accurate!
As scientific knowledge is by definition never complete and even expert opinions on a topic can differ, a medical information for patients needs to be verifiable, so traceably evidence-based and that means referenced with the original publications.
NO 'Written by Doctor WHO'
YES 'Based on Study Y, published in NEJM/ Lancet/ other respected journal in 2020 (FULL REFERENCE)' 23rd February 2020
Medical Information for patients has to be written in an accessible way
that makes medical technical terms understandable without
'dumbing down' or leaving out critical information.
Explaining difficult concept in an accessible way is difficult and should be
part of the teaching for Health Care Professionals.
Medical Information needs to enable patients to continue to educate themselves and to increase their capacity to take action for themselves or others, to give them agency. Over-simplification or incomplete information (e.g. not telling a patient which stage he or she is) prevents a patient from looking and actually finding further correct information and greatly increases the risk of patients falling for 'fake news'.
Original October 2018, last update 23rd February 2020 BR