I am a caregiver, relative, or spouse of a PatientsLikeMe member who has passed away. What options do I have to manage their profile?

We understand that losing a loved one is deeply difficult and often involves managing what they leave behind. For some, this includes a PLM profile. Family members often reach out to ask what steps to take after a loved one’s passing and how to thoughtfully handle or preserve their data as a legacy. Here's what you can do:

You can leave the account of your loved one open to keep the data they entered available for research — that other community members or our partners are doing. When leaving the profile open, you can choose to:

• Leave a note in the About Me section
• Change Email settings (note: PMs are helpful for anyone wishing to reach out, and newsletters can keep you up to date on research at PatientsLikeMe)
• Talk with other members (via private message or in the discussions) about life after loss, and any research progress that's happening

If you choose to keep your loved one's account open, please kindly let us know the date of their passing, and we'll update the profile icon with a 'deceased' note to show that the member has passed away.

The other option is to close the account, which you can do here. However, by doing this, it shuts down all correspondence with other community members and restricts any future use of the data on the profile for research.

To see more about how data is shared when you leave a loved one's profile open, you can check out the link for our Privacy Policy.