Table 4.

Participants’ considerations on being searchable

When personal data is shared with physicians all over the world or with a pharmaceutical company, larger clinical studies can be conducted to advance scientific research

Concerns were raised about the differing privacy rules at a global level

When personal information is shared only with physicians of the hospital that has been conducting the study in which the participant has taken part, possibilities are limited from a scientific point of view

A desire was expressed to be able to tailor preferences about whom participants want to share their personal data with

Trust in a new research study, conducted by foreign physicians or a pharmaceutical company, may be positively impacted by discussing the study with the participant’s treating physician

Specific information must be provided on the name of the pharmaceutical company