What Data Are Available for Access?
Access to data is a moot point if data are not associated with individuals (purposefully) or if data are not transmitted through a central point (nor to it). Hence, several questions arise: do these barriers exist, can they be overcome and should any objections regarding privacy, cost or otherwise be respected? Custodians often object to accessibility of data citing privacy of users as a concern, e.g., as in electronic medical records.
Applications on a user's cell phone perform proximity tracking using Bluetooth technology. When Bluetooth is turned on, a cell phone can sense when another Bluetooth-enabled cell phone is within 6 feet. Some users may not have Bluetooth turned on, because it consumes battery power, but it is commonly used with wireless earphone devices, and car speaker systems.
<Cell phone locations have long been tracked by cell phone providers using cellular signals (e.g., LTE) or by user-installed applications for navigation or social media using GPS or WiFi connections. These track individuals to a building or locale. For proximity tracking however, finer-grained information is desired: was someone within 6 feet and for how long, or how recently? For finer resolution, new applications using Bluetooth or WiFi signal strength have been proposed--but these are not yet proven.>
<Whether potential objections are well founded (should be respected).>
Other objections. What would be shared with public health and are there any ethical implications in the use of this Real World Evidence (RWE)? Is the data reliable or evidence grade? Are the data useful? The answers to these questions are dependent on the implementations of solutions at a point in time. They are research questions, which may not be answerable before-hand until research is conducted to see how the data are useful.
Discussion and Recommendations
Privacy laws and regulations currently do not allow public health access to private data. Requirements for FAIR access to data can be enacted through federal laws and regulations. Having laws that compel such data sharing, can free the custodian from the burden of responsibility for data shared with the government (they simply have to). However, compelling data sharing can have the unintended consequence of users or application providers designing systems which have no data to share, or simply not providing the service to jurisdictions that impose such requirements.