The Experience of Care Survey: Your Voice Can Make a Difference

CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers. 

June 17, 2016 | 5 min read
Rich DeNagel
The Experience of Care Survey has evolved since this blog post was published and this blog post no longer accurately reflects it. To learn more about the current Experience of Care Survey, contact

More than a year ago, the Cystic Fibrosis Foundation made available to all CF care centers “The Patient and Family Experience of Care Survey.” This survey allows people with CF and parents of children with CF to provide feedback to participating care centers, which can use this information to improve the quality of care.

Nowadays we receive a lot of surveys when we get home from the hospital or a clinic visit. One type of hospital survey is called the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey. It is linked to the funding the hospital gets with each hospitalization. Another type of survey is called the Press Ganey survey. It assesses the quality of services provided by different areas of each hospital. It basically grades a particular area of the hospital or clinic to see how well they are doing. Neither is aimed specifically at the care that people with CF receive. Every time I complete one, I find myself wondering what happened to it and if they took any of my suggestions. I stopped filling them out for a while because it seemed futile.

Well, that is not the case with the Experience of Care Survey. This survey is intended to improve the quality of care that care centers deliver to people with CF and is a way for people with CF, as well as parents and caregivers, to provide information anonymously to participating care centers. It is different from all of the other surveys in that we know that our feedback will be shared with, and reviewed by, our care teams. The hope is that we will see results in the form of a better experience during clinic visits instead seeing our feedback disappearing into thin air.

As patients, this survey gives us the opportunity to effect change (in 20 minutes or less!).

We get to provide feedback on our most recent visit, timeliness of care, infection control, our care team, health care resources and our overall health. So, basically, it covers our medical appointments from beginning to end. I took the survey for adults with CF, which I received in the mail, but it is also available to take online and on the phone -- and there are separate versions for parents of kids with CF and for Spanish speakers. If you haven't been asked to complete it yet, ask your care team about it.

Care centers can access the survey results in real time. The responses will provide the insights for care teams to learn their strengths and weaknesses in the eyes of the people they serve. 

When I took the survey, I initially had concerns about confidentiality but was assured the surveys are completely confidential. (A third-party vendor collects all of the data and will not share the patient information with the CF Foundation or the care centers. The only information the Foundation and your care center will receive will be the results. The results will not include any personal information.) The anonymity of the survey helped me feel like I could be completely honest. I took my time to really think about the questions and my answers. This is our opportunity to make our health care better!


One of the questions that I thought was interesting was about race and ethnicity. Once upon a time, we thought that CF was just a northern European white person's disease. Now, we know it is a global disease that affects all races and ethnicities. When I asked my care team why this question is important, they said the survey should help determine whether there are any disparities in care, and hopefully help improve practices so that care is given to everyone in the same manner. I think the statistics obtained in this area will be especially useful.

So I have a request of you -- whether you're an adult with CF or a parent of a child with CF: help make our medical visits more productive and useful. Help the clinic staff become more aware of our distinctive needs. It all starts with filling out this survey and sharing our experiences openly and honestly.

We are on the precipice of CF pivoting toward a much more manageable disease with effective, responsive health care. But it starts with us: the patients, the stakeholders. Please fill the surveys out -- online or when they arrive in the mail -- and start the process of getting more involved with your health care.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Rich was diagnosed with cystic fibrosis in 1969 when he was 6 months old. He also had an older sister with CF. Rich is a tough fighter who resides in New York City, and looks forward to many more years fighting CF.

May 2019 -- We were deeply saddened to learn of Rich's passing. Rich opened his heart to the CF community through our blog. He will be missed by many.

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