Patient Experiences Survey | We will research our chronic illnesses if the government won’t do it!

Frequently asked questions

Where will the results be posted?

The previous survey’s results can be found here:

This survey’s results will be posted in this forum and at SickAndAbandoned.com/Research/. You can also find other research on that page such as the Risk Factors Survey.

Preliminary results for the PES:

What happens with my privacy?

The survey doesn’t collect certain personally-identifying information such as your name. Please don’t put such information into the survey. Don’t put in the name of your doctors.

Sometimes, it is possible to connect the survey data to a person based on the time that the survey was completed. This is because some people fill out the survey and then post “Done!” in a support group. Somebody with access to the survey data could theoretically connect the two. However, the survey data will be de-identified if it is shared with other researchers or published publicly. Steps will be taken to protect your privacy.