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Why do patients believe their opinions don't matter?


The patient community is very large, but a broad understanding of the challenges we face is lacking. In peer groups patients often express their opinions of the care they have received. Patient experiences cover the entire range from very good to very bad.

There are existing patient surveys but they are usually driven by academia. I thought it would be a useful and simple thing to capture a view of the patient experience from the patient perspective so it should be simple to get a large group of patients to engage. Seriously, what could make more sense than patients speaking up about their experiences?

WRONG!!! Not being a professional pollster I have no idea what a "normal" response would be but I've been disappointed in the number of patients who have participated.

There are 100 million of us with liver disease and stories to tell but most are only recognized in the late stages. We believe that is wrong but a first step is to have the data. We don't have a national benchmark or tracking system to understand the problem broadly or to know if it is getting better or worse. That harms us as patients. If you are a patient consider participating.

 Click the image below to take the survey or you can scan the QR code.

You can also click here to take the survey in Spanish.


It is important that you participate as this request is by patients for patients and we are not trying to sell you something or to get you to participate in some program.

We are a patient group, we offer our services free to all who might be interested. The system mostly ignores us as individuals but if enough of us are willing to combine our voices we have a chance to be heard. 

We have become accustomed to so many people having the preventable diseases of our industrial society that we stop thinking about the consequences.  As liver patients we are central to the great wheel of comorbid illness and yet little attention has been paid to it in the past. This effort to document our experiences as patients is an effort to bring light to this dark place and we really do need your voice so please consider taking the survey.


You can also find information on our website by clicking here.

Thank you for your support. Also please forward this to anyone you know who might be willing to participate or spread the word.


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