Recently,the Science Advisory Board Group has performed a survey between the researches; if they would allow their private medical data to be openly available for research (58% have answered with “yes”).
I think that the question should rather associated with the quality of the data collection and non conflicted data extraction. In fact various insurances are already doing research with our data. Independent scientists conduct research that could benefit from the data (provided the quality of the data extraction is non conflicted). Do you think, such data should be collected (in anonymous form) in state (/federal/national?) departments of health and made available to academic research?
It is not really a matter of whether they should or not.Most would think it expedient, rather the question seems to center around precision. A precision that surpasses even identities.Therefore I agree with you that quality is the core issue. The Human Genome Project has already foreshadowed the move towards ever fine-grained data by making most of our "coding" open-source. Such developments in the medical field complements similar developments in nano tech, quantum physics, software engineering and genetics. Where knowledge of building blocks are far more vital to the advancement of science compared to the phenomenon/specimen/event/organism- although these are concerned with identities. Idiographic approaches tend be more contentious.
http://www.personalgenomes.org/organization/pgp
There are a few elements that should be taken into account in order to do this ethically (e.g. notice of use and disclosure, data retention, access mechanisms, GDPR...etc) check these guidelines for some more insights https://xcertia.org/app-privacy-survey/
Yes data from private health sector need to be included in a national, regional or local health information systems. They are useful in at least two aspects:
1. To further enhance complete health data of the population
2. To provide opportunity to compare the characteristics of users of public and private sectors
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