If information is distributed, both information gathering and quality control should equally be distributed.
So how does one truthfully share information such as scientific information- so that is complex, context-dependent and ever-evolving- across a motivated but diverse, multi-lingual and non-specialist patient community? And that, with volunteers and also, otherwise limited resources?
In a nutshell: crowd-based intelligence. With the critical aspect to not only crowd-source the information but also to crowd-source the control. Today, information, including medical and scientific information, is distributed across multiple channels and platforms. Using an equally distributed system to find it therefore makes sense. However, to prevent the spread of false information that could put patients at risk, control mechanisms have to be equally distributed.
While most understand the former- more eyes see more-, many struggle with the concept of distributed control in patient networks. In my experience, this is due to
1. lack of understanding of how networks are structured and how the information flows within them
2. lack of educational capability and failure to understand what and how needs to be taught
3. incorrect framing of what effective control actually needs to look like
4. a persistent paternalistic view of patients assuming a general lack of intellectual capability and ability to execute.
1. Network architecture
In its most extreme form, people assume the existence of a centralised network where a single entity produces patient-'appropriate' information, quality-controls it and spreads it and a patient solely relies on this network for informing him- or herself. While this might have existed in the pre-internet, print-based era, it does not correspond to today's reality.
Today's patient networks are overlapping, not platform-bound and redundant. Patient communities are not stable- they form and dissolve and go through cycles of stronger and weaker activity. To address different needs, individuals belong to various communities at the same time (this is why MPNE can work across language-borders) and use multiple channels and platforms to communicate with each other. Communication channels themselves evolve, based on factors like ease of use, confidentiality and cost. In such a setting, attempts at centralised control fall under the prerogative of undemocratic systems with the ability to control the totality of it but are neither realistic nor desirable for patient communities.
In a system where groups and platforms constantly shift, individuals and their connections with each other are becoming the semi-permanent constant. Just as we don't tend to lose connection with our family and our close friends just because we change our phone number, individuals maintain the connections they consider valuable, independent of the channel or the platform they use. It therefore makes sense to attach both the contribution of information as well as the control to the single individual, not to any given platform.
2. No short-cut to knowledge and an educational challenge
Knowledge has two essential functions in patient communities: it protects from falling for false promises and fake cures and it allows individuals to own their disease. A cancer diagnosis comes with a severe loss of control, understanding the disease and one's options returns a certain level of control and allows individuals to cope better (although no one will ever say they cope 'well').
However, the level of knowledge required is considerable as for example treatment options are often not only determined by the disease and approved therapies but also country-specific particularities in access. For someone without scientific or medical training, already the terminology to even get started can be daunting. The most effective way to deal with it is so simple it is almost laughable: we simply admit that it takes work to get to that level of knowledge, summarised as..... there just is no short-cut to knowledge.
This obviously does not mean one should not be smart about getting there. In our case, it means not only challenging the learners, but in particular, the educators. Teaching a group that is diverse with regards to its educational background, its Melanoma-specific knowledge as some will have just joined and in English, a language that is most likely not their native language, *is* hard. Thankfully, we keep coming across people who are passionate about their subject, about teaching it and who just love a challenge (and we love people who love a challenge). We have found a number of things that help, one of the most important ones not to take ourselves all too seriously- but this deserves an extra blog as this section is already getting to long, but just to say, the speaker brief contains this ;)
3. Evidence-based approaches scale better than eminence-based ones.
When it comes to how to quality-control information, correctly framing the challenge is important as patient communities need light-weight, scalable solutions that work in their specific setting. Most people erroneously focus on quality-control information, attempting to process any bit of information, quickly running into resource and trust (who gets to decide what is right?) issues. At the base, this is an eminence-based approach to information 'trust me, I'm a doctor'.
By shifting the emphasis to quality-control information, one rather focuses on how to enable individuals to control the quality and trustworthiness of any information coming their way. It is important to realise that the absolute majority on patient forums is well-intended: patients share information with the intention to help, not in order to harm others. Many are mortified when realising that what they shared might have put someone into harm's way. While this topic deserves more space- yet another post to write- the fundamental rule we
use is simple: any medical or scientific claim shared on any of our forums needs to be referenced, so state its source. Combined with different educational formats, a convention how to post and strategies to make areas of debate visible and accessible, this is has resulted in a Melanoma patient community that is mostly self-controlling. The beauty of it is the shear scale- it only takes a few individuals per group, as a principle it works across language borders and independently of platforms. Someone will always be online, keeping the burden on the individual low. Newly joining individuals tend to catch on fast as everyone sees that this is the way to avoid false information and to keep everyone safe. You post some fluff? Someone will politely ask you for the source....
4. Obviously, patients can do things like this. We already did. q.e.d.