Be part of the answer, share your experiences, and help to shape the future of PBC research.
- Make a difference & influence the future of PBC care.
- The opportunity to speak with a collective voice.
- Your experiences help to improve treatments & care in PBC.
- Surveys generate valuable, collective, anonymised data.
We encourage all patients to participate in our online surveys, they are used to find out about the experience of people living with PBC to identify areas for meaningful improvement.
We really can’t emphasise enough what a big difference you can make with such a small amount of your time. Previous surveys have explored symptom burden, patient experience, and patient participation in clinical research. Your experiences have directly influenced the understanding of symptoms, the development of new treatments, and the name change (Primary Biliary Cirrhosis to Primary Biliary Cholangitis).
Already, this data is being shared at important medical conferences across the world. As an example, there is now a nationwide UK audit of PBC services to see how many patients do or do not receive the recommended care. One of the major drivers that convinced clinicians for the need of this audit was a poster abstract sharing the data from one of our surveys, highlighting the levels of patient care and adherence to clinical care guidelines, from the patient perspective. This audit will now guide the improvement in patient services, not only in the UK but in a number of countries.
We also use surveys to find out what you think about us; including how, why, and when you use our services. These results help us to assess our performance, maintain quality and relevance, and inform the creation and development of activities and services.
Any new surveys will be promoted and available to complete here on our website, and in the surveys section of the PBC Foundation self-care app.
We thank you in advance for your participation.