Our first meetup of our recently founded group
Access to collective medical knowledge
Medical decision making is about choosing the best options from a set of possible alternatives:
- The choice of tests and examinations in the process of differential diagnosis
- Deciding on a diagnosis from a set of candidates (different diseases may present themselves in very similar ways)
- Choice of treatment
With billions of people around, most medical problems have already been addressed by a number of people. The problem is that the resulting knowledge is not easily accessible to others: they are unaware of the solutions that other people with similar conditions have already found. Obviously, people can make significant progress simply by following the advice and ideas of others who have already walked a bit of the path. The success stories of word-of-mouth recommendations show that even individual experiences can help guide others. Moreover, each reported medical case contributes to the empirical evidence which allows medical decisions to be taken even more accurately. Clearly, there is a need to systematise the collection, classification and sharing of individual cases.
Many patients experience a sense of powerlessness when the health care system fails to include them in diagnostic or treatment processes. They often receive little information about treatment options or the underlying causes of their symptoms. This passive and dependent role is counterproductive and is considered to have a negative effect on the process of recovery. Patients should instead be treated as vital agents in the entire process. From all involved actors, patients have the strongest sense of ownership – it’s about THEIR health.
Patients consult doctors, undergo clinical examinations, try different treatments and research for medical information relevant to their conditions(s). Many of them become skilled and knowledgeable about the every day dynamics of their condition and usually end up with an extensive record of medical data and expertise. This accumulated knowledge is an invaluable source of information for other people with similar health problems.
Information is a key factor in empowering people to self-help.
Medical information in the internet is mostly of average or poor quality. It is often incomplete or opinionated and rarely references empirical data. User forums are a frequent source of information but discussions are repeatedly emotional or off topic. Medical information is mixed with personal opinions and it is very difficult to verify the validity of specific claims.
Even worse is the power exerted by industries trying to influence the available medical information to their advance.
OPENMEDiAID aims to improve this situation with structured data models, peer reviews, statistics and a community motivated by the joy of sharing.
Many areas of public health care are influenced by financial interests of the pharmaceutical / medical industry. Potential for profit may determine which medical areas are primarily researched. This in turn defines which kinds of treatment are backed-up with empirical data, get recommended by doctors and covered by health care providers.
This also affects the communities of people with rare diseases. The low volume of potential customers causes limited revenue expectations for companies – they will most likely not invest into research in that area.
OPENMEDiAID, in contrast, has no other interest than helping people get better and as such includes and promotes methods that have shown to be working. It embraces the creativity that people have when looking for solutions to their problems. It provides opportunities for any patient community to gather information and mutual support.