To: Dr. Thomas Frieden, MD MPH
Director, US Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta GA 30333
About three weeks ago our home phone number was selected at random for participation in the National Immunization Survey. An avid fan of surveys, I was excited when the interviewer called last night. And as an epidemiologist myself, I was happy to provide valuable information to the CDC and other public health researchers.
Several minutes into the call, I told the interviewer that I did not have the exact date of each of my daughter's vaccinations on hand. The interviewer assured me that this was fine and we proceeded with the interview. I answered each of the questions asked.
After answering all of the survey questions, the interviewer asked me to provide the name(s) of each of the physicians who have vaccinated my daughter. I provided this information and helped the interviewer spell words such as associates and washington. Additionally, I had to explain to her that U.S. zipcodes only contain five digits after she pressed me for a six digit code. Then I was asked by the interviewer to provide my daughter's full name so that she (the interviewer) could contact my daughter's doctor and obtain her immunization records.
At this point in the interview, I told the interviewer that I would not provide the information she requested nor did I believe she had the authority to access my daughter's records if I provided the CDC with her full name and her doctor's name. The interviewer then persisted three separate times that I provide my daughter's name. I told her that I was under no obligation to provide an answer to any question she asked. I quickly told her the interview was over.
As a mother and epidemiologist, I am really disappointed by my experience during the National Immunization Survey interview. In addition to being pressured by the interviewer to provide information I was not comfortable providing, I also felt like she rushed me through the survey. She failed to speak slowly or clearly and I had trouble understanding her. Repeatedly I asked her to repeat a question because she was speaking so fast I could not understand her.
I failed to get the name of the interviewer.
I would like to issue a formal complaint to you. I was disappointed by the quality of the interview and was angered by her persistence to get me to provide information I did not want to provide. I am confident that she broke from the outlined survey script and am sure you realize that such a mistake will lead to decreased internal and external validity of the study results.
I would also like a formal explanation of how the CDC is able to obtain immunization records of children whose parent's give up their name during the interview. Are you telling me that my interviewer could have called my child's doctor today and obtain all of her immunization records without my written authority? How is that legal? How does this not violate HIPAA?
As much as I value and support the work of the CDC and other organizations conducting national health surveys, I believe that protecting private health information, respecting the wishes of the survey participant, and conducting the survey in a clear and easy to understand manner is of the utmost importance. Last night, I felt threatened by an interviewer worker for your agency and I hold you and your staff responsible.
You are never going to conduct valid and reliable surveys unless the participants feel protected, cared for, and respected. I do hope things will change.
The mom at Slowly Growing Old Together