An outstanding information appear recently in SINC regarding the problems to carry out data mining with scientific papers in the EU, due to the laws of intelectual propierty.
We have already specify the importance of Knowledge Discovery tools based in data mining in several posts and specify that inside of the definition of Health 4.0 the techniques of Web 4.0 regarding multimedia data mining for Literature base Learning (LbL) and the Cloud of Link data with artificial intelligence essential in Biobanks and in personalize Health (pHealth).
The question come now on the new interest to access Medical Data, this means your personal health record as a citizen, which is located in one of the Health Institutions, to extract information that might be of interest for other patients in similar situation but comercialize this valuable information. You are not anymore a consumer/patient but a valuable strain of information for future treatments or medical actions or just medical information that means a provider. Some of the questions are listed here:
- If Farmaceutical or Insurance companies get advantage of your personal data information and comercialize that knowledge
- If they are allow or not to do this if you did not give specific permission
- If you give permission and they obtain comercializable information they should pay you
- If you offer your clinical data for data mining investigation they should pay for this.
- If you sell your data how much they should pay.
That means that any citizen with their data available is transformed into a provider for the institutions handling and extracting information from this data.
Up to know, this was limited to the research and to help in an altruistic manner with no ID recover (anonimized data) and brought no problem. The problem comes now in the ERA OF DATA MINING with powerfull tools of Knowledge discovery complemented with Machine Learning techniques.
What will happens if Farmaceutical or Insurance companies wants to exploit that information and commercialize them or even buy that information from citizens. Would you be interested to give your data for a month fee?. I am sure that it could be an alternative income for many families.
This is extended to issues not related with health, such as power consumption, travelling habits …., data that belongs to you and that is used by companies to extract information to comercialized and get profits.
I do not see much discussion over those aspects.
FN: Noticed that Data Mining is handled though Data based extraction techniques, while Machine Learning is based in Neuronal networks learning techniques.