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16/52 Knowledge is protection - part 1

Work in progress, version 1.0

One of the main reason patients join patient communities is to find trustworthy information on their condition and their treatment options in order to be able to make informed decisions. In order not to put patients inadvertently at risk, patient communities therefore need to devise strategies how to deal with scientific and medical information. Thereby, it is important to consider people's motivation and needs, the way adults look for information and learn, the nature of medical information itself as well as the way how it travels.

This is part 1 on the topic of how we in MPNE have learned how to accurately share medical information in lay patient communities and focuses on the nature of medical and scientific information.

The largest part of medical information in itself is complex, contextual and ever-evolving. This is particularly true for a field like oncology, where treatments still need to be developed. And it is certainly no coincidence that MPNE started and grew when the first treatments for Melanoma were in clinical studies and showed real, dramatic efficacy. A chance to survive depended on knowing which clinical trial- the most promising drug, the fairest design- to join and when to leave it for a better option. Since 2011 and the approval of the first Melanoma drug, the overall survival at 5 years (5 yr OS) in Melanoma went from 5 to over 50%. Not everyone who joined a clinical trial, survived. But those who survived all had been at least on one clinical trial or Early Access Program.

A brutal learning opportunity.

We knew that few of those who joined the metastatic Melanoma forum would still be alive by the end of the year. It was clear that those who understood the Science and knew how to find the right clinical studies, who spoke English well enough, had the means to travel if necessary and then had the stomach to upset everyone around them- chasing results, getting your files, asking for extra options, leaving a trial all come with extra conflict, many of us will e.g. remember Lori's experience- had a much higher chance of getting out alive. The unfairness of it all was sickening. But it was very clear the Knowledge offers Protection. It wasn't however about knowledge for the sake of knowledge- it was always about how to make the best possible decision to increase one's chances to survive, given a highly uncertain situation.

It turned out that there were different parts to that knowledge required- one was pure basic medical knowledge, understanding the disease, staging, diagnosis and prognosis. Without that foundation, accessing any relevant information was impossible. However, that part was relatively easy to solve as there is fantastic teaching material for medical students and numerous dedicated educators who share their content online. The scientific part was already considerably harder, especially as many found the continuously evolving nature and relativity of the process unsettling. And the hardest part probably was how to take decisions while one navigates personal preferences and the omnipresent and daunting conflicts of interest. All of these are big topics so will go into future blogs...

It is important to understand that when we started, we had no model, no structure and no system in place. We were all desperate and because we knew that Knowledge somehow was so critical, some of us just started to teach. Anything that looks systematic and strategic now started as observation of something that worked- or more often, of something that did not work- in our community. Things became easier after we realised that developing 'thinking models' made us much faster- you observe, you develop an abstract model of the process, you test it, you refine and you repeat until you have a working tool- that you then share as that's the way to scale protection. And you see whether anyone has made similar observations, maybe in a different context- and has something to say that could help.

So what we have today is empirically grown. We have things that work really well, some that work okay but that need more tweaking and then some things, we're trying for the first time so who knows... The reason we started to develop 'thinking models' was that in any patient community, newly diagnosed patients are joining all the time. Experiencing culture to know 'how we do things around here' takes a long time, often more time than Melanoma patients had. Effective 'thinking models' are abstract but simple concepts that anyone can run with, allowing for speed and for scale.

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Rob @DIA Europe 2024

'I was recently fortunate to attend DIA Europe 2024. DIA is the Drugs Information Agency and is currently in its 60th year. Drug Information Association: The Global Network for Health Care Product Dev

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Aug 11, 2022

I agree that medical terminology is supposed to mean one thing only, BUT the way it is wielded by clinicians/HCPs means a symptom can be described differently - either because the clinician doesnt really know what it is or hasn't delved into the full picture, but nevertheless, comes up with a term. We se this for example in Vigiibase, the WHO collector of rare Adverse events, it is clear (at least at the beginning of a drugs use) that symptoms are not refined or understood, and one symptom can be described in more ways than the CTCAEs would normally allow. This is also confusing for patients, because the terms they then search, are not what they experience.

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