Latest Surveys

[PBCRobert]

Greetings, friends.

Delighted to let you know the next round of surveys are up and live on the PBc Foundation App.

Already the first survey has ~800 replies. The App has 2500 downloads.

We are looking at the patient experience in clinics. Who needs second-line therapies? Who doesn’t? Who is getting on to clinical trials? Who isn’t? Who is being told their test results. Who isn’t?

More and more often we are told of unfair, inequitable or just bad practice. So we need to turn those stories and experiences into “evidence” or into “data”. Hence the surveys.

We cannot use the anecdotal evidence of a few patients talking to us on the helpline. We need the experience of hundreds of patients to show policy makers and clinicians where the gaps are: in service, in knowledge, in best practice.

So please... let your voice be heard. Let your experience be a force for good, a force for change, a driver in the next improvements for each and every single person affected by PBC.

Thank you.

Your humble servant,

Robert.

[Sydgal]

completed the new survey already, it was very quick and easy

[Sona_akb]

Mission accomplished 🌹

[P13jne]

Completed for you. I hope you have a great response for the survey

[Wocket]

All done 😀

[butterflyEi]

I completed the first survey. I logged out and then logged back in. It seems by doing that the survey has been accepted. I cannot as yet see another survey.