All Watsi patients are required to sign a legal waiver granting Watsi permission to publish their personal information online for the purpose of fundraising on their behalf. Watsi’s Medical Partners are responsible for explaining the waiver to patients in their native language and sending a signed copy to Watsi.
Obviously, patients are usually more than happy to sign the waiver in exchange for a life-changing medical treatment. However, it is because patients are desperate for care and willing to do whatever necessary to receive it, that we have the added responsibility of doing everything possible to protect their privacy, regardless of the fact that they grant us permission to publish their personal information.
Our team has spent an enormous amount of time debating medical ethics. However, it wasn’t until we arranged a call with Steve Pantilat, the former Chair of the Ethics committee of the Society of Hospitalist Medicine, that we were introduced to the least information necessary rule, which we eventually adopted as our own.
The least information necessary rule means that we will only publish personal information about patients that is necessary for their profiles to be fully funded within a reasonable amount of time. For example, we plan to only publish patients’ first names, because lack of a last name probably won’t preclude a profile from being funded. However, we plan to publish photos, because we think that establishing a personal connection between the patient and the donor is essential for the funding of the profile.
Initially, we will have to make the call as to what information is necessary and what isn’t, but in the future, we hope that through A/B testing our donors will confirm and/or deny our initial assumptions.
What information do you think we should publish?