Why this page is written in this way: This needs themes of how to share power with people affected. The original list had a range of things that fall under the theme of power-sharing, but they jumped back and forth.
Those original standards in the list were:
- Create a program that ensures that healthcare researchers have access to the underlying data to solve problems other than the ones that your company monetize.
- At least one paid patient advisor on the board of directors and on the pre-launch software evaluation team. That patient is responsible to review each of the annual assessments each year.
- Annually, have a meeting to reassess what patient data is being collected and how much of it is directly attributable to specific identities, reassess to ensure that specific collected data is being leveraged in a way to benefit patients, and to asses that patient data is not being used against patients.
- Create an internal “how we share, leverage and protect data” document. Review this annually with the patient board member.
These are things that tech platforms must do. This is written things ‘How to Share Power’ with the standards for tech platforms that fall under this theme.