MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

Trustworthy Medical Information 


MPNE position


​​Trustworthy Medical Information is critical for Melanoma patients as survival continues to depend on it. This applies both to written and spoken information.


MPNE standards for high-quality Medical Information

 


Accurate: VAlid and verifiable

evidence-, not eminence-based Medicine. With date and reference.

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 Outdated information is no longer accurate!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. 


 Example 

NO      'Written by Doctor WHO'

YES     'Based on Study Y, published in NEJM/ Lancet/ other respected journal in 2020 (FULL REFERENCE)'  23rd February 2020 




Accessible

'If you can't put it simply, you don't understand it well enough'

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. 




Agency

Google is as good as you know what to search for

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'.












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​​Further reading


https://www.healthnewsreview.org/2018/10/its-time-for-aaas-and-eurekalert-to-crack-down-on-misinformation-in-pr-news-releases/


Original October 2018, last update 23rd February 2020 BR