VPPRN Doctor, Are You Listening? Study

For adults living with any form of vasculitis, this study aims to:

• Understand what helps or hurts satisfaction in relationships between patients and their healthcare providers
• Use patient feedback to help healthcare teams improve communication, care experiences, and health outcomes

There are 2 stages in this study:

STAGE #1 – Focus groups are currently underway

• The first phase of the study will include three focus groups, each consisting of 5 to 10 patients.
• Those selected to participate in these three focus groups will take part in two 60-minute Zoom sessions with other patients.
• During these virtual discussions, participants will be invited to share their personal experiences—both positive and negative—with their healthcare team.

STAGE #2 – Survey to launch in Spring 2026!

• We will ask that you complete a one-time questionnaire about yourself and your health.
• The questionnaire will take approximately 10-20 minutes to complete.
• We may contact you regarding your responses to the questions for additional clarification or to address any gaps in data.
• The questionnaire will be available online.  No travel is required.

How satisfied patients feel with their care is very important, but it is not always talked about or measured. When patients are satisfied, they are more likely to follow treatment plans, have better health outcomes, stay with the same care team, and feel more confident about their care. A 2022 survey of over 2,000 adults conducted by the Harris Poll found that 69% of Americans would change healthcare providers for better service, even if they felt their current care was good. This shows that there is still room to improve how care is delivered. Research also shows that how a doctor communicates and interacts with patients plays a major role in how satisfied patients feel.

People living with vasculitis often face complex medical problems as well as emotional and mental health challenges related to their disease and treatment. These issues can be difficult to fully address during a short clinic visit. The goal of this study is to better understand what helps build strong, trusting relationships between patients and their healthcare providers, identify needs that are not being met, and find areas where changes can be made to improve patient experiences. We will focus on factors that healthcare teams can realistically change, such as communication and care practices, rather than things outside their control like insurance coverage or clinic location.

There may be no direct benefits to you from taking part in this research.

However, your participation in this study may contribute to a better understanding of the qualities and characteristics that influence patient–healthcare provider relationships, as well as ways to improve communication and care between patients and their healthcare teams.

Whether or not you take part in a research study is up to you. You can choose not to participate, or you can agree to take part and later change your mind. Your decision will not be held against you.

You can ask all the questions you want before you decide.

This study is open only to current members of the Vasculitis Patient-Powered Research Network.

Our research team is here to make participation in this study easy for you. 

The study coordinator is available for you to contact if you have any questions or concerns.  Contact Christine Yeung from the Study Team at christine.yeung@pennmedicine.upenn.edu with questions about the Doctor, Are You Listening? study.