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 losing a loved one is not an easy situation and involves going through what they left behind. For some, this can include a PatientsLikeMe profile. Many members write in asking what to do after the death of a loved one, and how to go about Leaving a Legacy of Data.

You can leave the account of your loved one open to keep data available for research — that other community members or 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 forums) 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 black band 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.

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