- The survey asked over 1,000 parents if they would be willing to share their child's vaccination records with the CDC. About 26% said yes, 52% said no, and 22% said they were unsure. - For those who said no or unsure, the most common reason given was privacy concerns (53%). Other top reasons included believing it was unnecessary, concerns about how the data would be used or kept private, and distrust of the government. - Willingness to share was associated with vaccine behaviors and beliefs, such that those who were up-to-date on vaccines or had a positive view of vaccines were more likely to be willing to share.

1. Results: Willingness to Share
Figure 1 below shows how the 1,029 ChIMPS participants answered the willingness question, and whether they provided an
open text response about why they would be unlikely to share.
Figure 1. Responses to Willingness Questions
Willingness to Share and Demographic Variables
• Chi square tests were performed, and there were no significant differences by age, income or educational attainment
on willingness to share medical records.
Willingness to Share and Health Behaviors
• Possession of shot records was significantly associated. While 27.4% of those who reported having shot records were
willing to share, only 14.9% of those who did not have shot records, and 22.1% of those who were not sure if they had
shot records, were willing to share (p=.001).
• While intention to vaccinate was not significantly associated, there was a significant association between willingness to
share and certain vaccine behaviors.
• Of those who reported their child had not had a flu vaccine that flu season, 62.4% said they were unwilling to share
records while only 46.4% of those whose child had received the vaccine were unwilling to share (p<.0001). A chi
square test showed willingness to share vaccine records and whether or not the children had received all recommended
vaccines were also significantly associated (Table 2).
Table 2. Crosstabs of willingness to share
records with CDC and recommended vaccine
status (Chi-square, df= 4, p=.032)
Willingness to Share and Attitudinal Variables
Believing children receive too many vaccines in the first 3 years of life, that vaccines may have ingredients that are unsafe,
that vaccines are given to children for diseases they are unlikely to get, or that information from the government on vaccines
is not trustworthy were associated with a decreased willingness to share. Agreeing that vaccinating is important to the health
of others in the community was significantly associated with an increased willingness to share vaccine records.
Results: Reasons Unlikely to Share (continued)
Table 3. Reasons for unlikely to share records with CDC by gender and race
Table 3 shows reasons for
being unlikely to share by
gender and race/ethnicity.
Privacy is the most common
reason across gender and
racial groups. Table 4 shows
the response categories by
whether or not the
respondent’s children received
all recommended vaccines and
whether the parent delayed a
vaccine for nonmedical
reasons. Privacy is again the
top reason for being unlikely to
share across behavior groups.
Table 4. Reasons for unlikely to share records with CDC by vaccine behaviors
Dream big. Then call ICF.
Willingness and Reasons for Unlikeliness to Share Child Immunization Records with the CDC
Childhood Immunization Mobile Panel Survey (ChIMPS)
Deirdre Middleton, MPH; John Boyle, PhD; Lew Berman, PhD; Ronaldo Iachan, PhD; Yangyang Deng, MS; Michael Greenwell; Glen Nowak, PhD
Contact: Deirdre Middleton Deirdre.Middleton@icf.com | Lew Berman Lewis.Berman@icf.com
Background
The Childhood Immunization Mobile Panel Survey II (ChIMPS II) was a methodology study
to assess mode, introduction, and content variations for the National Immunization Survey
(NIS). This study uses a smart phone panel because it offers ease of administration, lower
cost, and convenience for respondents. One content variation focused on assessing the
willingness of a respondent to provide permission for the Centers for Disease Control and
Prevention (CDC) to access their children’s medical vaccine records.
Methods
Randomly selected adults from a large national mobile panel who resided in a household
with children were invited to participate in the survey via a smartphone application. An
eligibility screener identified households with children 19-35 months old. More than 1,000
respondents participated using an instrument similar to that used in the NIS. Respondents
were asked whether or not they would be willing to share immunization records with CDC.
Respondents answering “No” or “Unsure” were asked why they were unlikely to share via
an open-text question to provide context.
• Willingness Question: To get a complete picture of the vaccinations received by
your child(ren), we would like to know if you would give permission for the Center for
Disease Control and Prevention to contact doctors or health clinics to obtain a copy of
the vaccination records. These records contain only the immunizations and dates of
the immunizations for your child(ren). If requested, would you be willing to provide
permission to the Center for Disease Control and Prevention to contact doctors or
health clinics to obtain a copy of vaccination records for each location?
Response Options: Yes, No, Not sure
• Open Text Question (asked of those who responded “No” or “Unsure” to above):
Why would you be unlikely to give CDC permission to obtain vaccination records for
your child(ren)?
Three individuals with expertise and experience in survey methodology, public health, and
item coding independently reviewed the open text responses. They jointly reached
consensus on a list of response categories. The categories were revised based on a
review by an outside expert in immunization communications and hesitancy. Three coders
were trained to categorize each open text response to a primary and secondary response
category. Two coders independently coded all responses and agreed on the response
category for 91% (652) of records. The 9% (68) of discordant records were independently
coded by a third coder. If the third coder and one of the other coders agreed, that response
category was used. In 17 cases, all 3 coders selected a different response and these
cases were assigned to the “other” category.
Table 1. Examples of Responses and Coding Categories
Objectives
This presentation describes willingness and unwillingness of respondents to share vaccine
records with CDC as part of smartphone survey, and the reasons respondents gave for
being unwilling or unsure about sharing their child’s medical records with CDC.
Conclusions and Discussion
More respondents reported being unlikely to share
vaccine records with CDC than those who were
willing. It should be noted that the question did not
provide information on how CDC uses data to
benefit public health, or information about how
privacy is protected and data security assurances.
Such information may impact willingness to share.
In the open text responses, some of the concerns
respondents shared could be addressed, such as
needing more information or the ability to validate
CDC’s involvement. Further research could
explore whether respondents would be likely to
share data with additional information or an option
to call or text a helpline.
Willingness to share was associated with both
vaccine beliefs and behaviors, therefore, further
research exploring these constructs may provide
insight into how this could bias study results and
estimates of vaccine coverage. This may be
related both to social desirability bias as well as a
relationship between distrust of vaccination
science and either more general distrust, or more
specific distrust of government or CDC.
As technology increasingly provides tools to more
easily collect and share data, there are also many
questions from citizens about how to protect
privacy. The challenge for researchers will
continue to be finding ways to earn and maintain
trust.
Open Text Response Coder 1 Coder 2 Coder 3
Final
Category
Personal information Privacy Privacy Privacy
Not necessary to authorize
through survey
Other
Need to validate
survey company/
application or
unsure CDC
involved
Unnecessary Other
I choose for you to not do
that.
Not interested Other Not interested Not Interested
I think its un necessary and I
try to keep the government
out of my business as much
as is possible.
Government
Distrust/Hostility
Unnecessary
Government
Distrust/Hostility
Government
Distrust/
Hostility
I don't understand why
they'd need my specific
child's vaccination records.
Objective not
Clear
Objective not
clear
Objective not
clear
Because I don't feel
comfortable giving out
personal information.
Privacy
Uncomfortable
doing this
Privacy Privacy
Question how much other
info might receive and
whether would keep data
private
Information/ Data
Safety
Unsure/Maybe
Information/Data
Safety
Information/
Data afety
(Has your child/have all of your children)
received all of the vaccines that are
recommended for children up to his/her age?
Yes No Don't Know Total
Willing to
Share
Child's
Vaccine
Records
with CDC
Yes
264 8 0 272
26.7% 21.6% 0.0% 26.4%
No
502 27 3 532
50.9% 73.0% 60.0% 51.7%
Not
Sure
221 2 2 225
22.4% 5.4% 40.0% 21.9%
Total 987 37 5 1029
Gender Race/Ethnicity
Reason Unlikely to Share Medical
Records with CDC Male Female Caucasian
African
American/
Black
Hispanic/
Latino Other
Don't want child record to be used
for statistics
0 0.0% 5 1.1% 2 0.4% 3 0 0 0.0% 0 0.0%
Don’t want the doctor/doctor’s
office contacted
1 0.4% 2 0.4% 2 0.4% 0 0 0 0.0% 1 1.5%
General/unspecified Distrust 7 2.6% 10 2.2% 11 2.2% 2 0 3 3.0% 1 1.5%
Government already has this
information
2 0.7% 12 2.7% 10 2.0% 0 0 3 3.0% 1 1.5%
Government Distrust/Hostility 3 1.1% 6 1.3% 3 0.6% 0 0 2 2.0% 4 6.0%
Hassle 4 1.5% 5 1.1% 5 1.0% 0 0 2 2.0% 2 3.0%
Information/Data Safety 7 2.6% 25 5.5% 25 5.1% 3 0 2 2.0% 2 3.0%
Need to validate survey company/
app; unsure CDC involved
9 3.3% 11 2.4% 16 3.3% 2 0 1 1.0% 1 1.5%
Not interested 14 5.2% 16 3.5% 19 3.9% 3 0 6 6.0% 2 3.0%
Objective not Clear 19 7.1% 24 5.3% 24 4.9% 5 0 7 7.0% 7 10.5%
Other 20 7.4% 29 6.4% 30 6.1% 8 0 7 7.0% 4 6.0%
Other approval needed 5 1.9% 7 1.6% 8 1.6% 1 0 2 2.0% 1 1.5%
Privacy 139 51.7% 239 53.0% 265 53.9% 27 0 52 52.0% 34 50.8%
Uncomfortable doing this 10 3.7% 12 2.7% 15 3.0% 3 0 2 2.0% 2 3.0%
Unnecessary 10 3.7% 16 3.5% 20 4.1% 2 0 3 3.0% 1 1.5%
Unsure/Maybe 17 6.3% 31 6.9% 35 7.1% 2 0 7 7.0% 4 6.0%
Would be willing 2 0.7% 1 0.2% 2 0.4% 0 0 1 1.0% 0 0.0%
Total 269 451 492 61 100 67
73.6% (n=757)
Asked open text
question:
Why Unlikely
to Share?
720 (95.1%)
entered a
response
about why
they would
be unlikely
Would you be willing
to provide permission
to CDC to contact
doctor to obtain
vaccination records?
n=1,029
Yes
26.40%
No
51.70%
Unsure
21.90%
Results: Reasons Unlikely to Share Based on Coded Categories
Of 720 respondents who answered the question on why they were unlikely to share their child’s vaccine records, privacy
(378, 52.5%) is the most common reason.
• There were 48 (6.7%) who said they would maybe share with more information or that the objective of sharing was not
clear (43, 6%).
• Other reasons for being unlikely to share include concerns with data safety (32, 4.4%), not interested (30, 4.2%),
thinking it is unnecessary (26, 3.6%), being uncomfortable doing this (22, 3.1%), expressing a need to validate the
survey company or being unsure CDC is really involved (20, 2.8%), general/unspecified distrust (17, 2.4%), a belief that
the government already has this information (14, 1.9%), needing approval from another member of the household first
(12, 1.7%), government distrust/hostility (9, 1.3%), believing it would be a hassle (9, 1.3%), not wanting child’s record to
be used for statistics (5, 0.7%), or concerns about the doctor's office being contacted (3, 0.4%).
• There were 49 response classified as Other (6.8%).
(Has your child/have
all of your children)
received all of the
vaccines that are
recommended for
children up to his/her
age?
Have you ever delayed
having your child or
children get a
recommended vaccine
for reasons other than
illness or allergy? By
delayed we mean put
off, but ultimately
ended up having it
done.
Reason Unlikely to Share Medical
Records with CDC Yes
No / Not
Sure Yes No
Don't want child record to be used
for statistics
5 0.7% 0 0.0% 0 0.0% 5
0.8%
Don’t want the doctor/doctor’s
office contacted
3 0.4% 0 0.0% 1 1.0% 2
0.3%
General/unspecified Distrust 17 2.4% 0 0.0% 1 1.0% 16 2.6%
Government already has this
information
14 2.0% 0 0.0% 3 2.9% 11
1.8%
Government Distrust/Hostility 9 1.3% 0 0.0% 2 1.9% 7 1.1%
Hassle 9 1.3% 0 0.0% 1 1.0% 8 1.3%
Information/Data Safety 32 4.6% 0 0.0% 3 2.9% 29 4.7%
Need to validate survey company/
app; unsure CDC involved
20 2.8% 0 0.0% 2 1.9% 18
2.9%
Not interested 29 4.1% 1 7.1% 8 7.6% 22 3.6%
Objective not Clear 41 5.8% 2 14.3% 11 10.5% 32 5.2%
Other 49 7.0% 0 0.0% 2 1.9% 47 7.6%
Other approval needed 12 1.7% 0 0.0% 1 1.0% 11 1.8%
Privacy 365 51.9% 13 92.9% 60 57.1% 318 51.7%
Uncomfortable doing this 22 3.1% 0 0.0% 3 2.9% 19 3.1%
Unnecessary 25 3.6% 1 7.1% 5 4.8% 21 3.4%
Unsure/Maybe 48 6.8% 0 0.0% 2 1.9% 46 7.5%
Would be willing 3 0.4% 0 0.0% 0 0.0% 3 0.5%
Total 703 17 105 615