Crowd-sourcing is defined by Meriam-Webster as ‘the practice of obtaining needed services, ideas, or content by soliciting contributions from a large group of people and especially from the online community rather than from traditional employees or suppliers.’ Applied to Health, this can therefore mean many things. For the intent of this blog however, I am going to use a custom made definition: the practice of obtaining medical knowledge from a broad range of people, across the internet. This therefore does not include crowd-sourcing the development of tools (e.g. Medable) or the use of resources (e.g. UberHealth), or anything beyond medical knowledge and diagnosis. Basically, I’m focusing on Health Forums.
So, let’s start with a little experiment on the more common form of Health Forums. I will hypothesize that I have a headache that is worse than usual, and have blurred vision as well. When I search for ‘Health forum’ in Google, the first result is patient.info/forum. I search for ‘Headache blurred vision’ and click on the first result. They are not tailored to the blurred vision, but the page is full of posts about headaches. ‘561 recent posts’ to be exact. As well as many of these having multiple replies, there are many that still have no replies. No credentials of the contributors are displayed so the validity of the diagnosis is uncertain.
While these forums receive a lot of criticism for giving information that may not be accurate, they can be useful in certain circumstances. Very common issues can be well explained on such forums, and if you can be bothered to trawl through many posts, you may gain a broad view of potential issues. Whilst these forums give you an idea about what could be wrong and how to physically fix it, they will also have an impact on the mental status of people using them to gather information. This can go either way, by having a calming effect if many other people have had similar symptoms, or by causing concern if people mention serious or untreatable conditions.
People often turn to these sorts of forums while waiting for physical appointments, as the information is available instantly. However crowd-sourcing medical information can also be used for long term conditions where correct diagnoses have not been reached by individual doctors. Crowdmed.com was founded in 2012, and provides a regulated crowd-sourcing service for medical information on complicated illnesses that have not been correctly diagnosed. The system works by ‘Medical detectives’ signing up to the site and registering their credentials. According to the website, 69% of their detectives work in or study medicine. Cases are submitted by patients, who are encouraged to submit as much information as possible, including test results. The ‘medical detectives’ then get to work to solve the case. However there are two key things that make this crowd-sourcing much more interesting than traditional forums: detectives are incentivized, and they are ranked. Patients pay to use the service, and the money (apart form a cut taken by the website owners) is rewarded to the detectives that come up with the most accurate diagnoses, as determined by the patient. This incentive is coupled with a score, whereby new users have less influence on the topic. If they perform well their score is increased, so that the best detectives end up having the most influence, and also receive the highest reward.
According to Crowdmed.com, over 60% of their clients claim the site helped them come to the correct diagnosis, and over 50% say that their Crowdmed.com diagnosis was later confirmed by a physician. What makes this service impressive is that these are cases that have not been solved by physicians or specialists at the time of uploading.
Crowdmed.com is just one example of an alternative system that can be used to crowd-source medical knowledge, and it definitely has many pros compared to traditional methods. Yet it also has its flaws, for example the information can be inaccurate, it costs money, and patients end up with a list of possible diagnoses. It seems however that to a certain extent, crowd-sourcing medical knowledge can be more effective, or faster, that relying on individual specialists. So far I am unaware of any other systems for crowd-sourcing medical knowledge, but if you know of any please let me know, as I am sure there are many more out there!