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Privacy Impact Assessment Form
v 1.47.4
Status Draft

Form Number

F-77444

Form Date

Question

Answer

1

OPDIV:

NIH

2

PIA Unique Identifier:

P-6198995-104835

2a Name:

9/27/2016 3:20:04 PM

Palliative Care: Conversations Matter Phase Two Evaluation
Survey
General Support System (GSS)
Major Application

3

Minor Application (stand-alone)

The subject of this PIA is which of the following?

Minor Application (child)
Electronic Information Collection
Unknown

3a

Identify the Enterprise Performance Lifecycle Phase
of the system.

Implementation
Yes

3b Is this a FISMA-Reportable system?

4

Does the system include a Website or online
application available to and for the use of the general
public?

5

Identify the operator.

6

Point of Contact (POC):

7

Is this a new or existing system?

8

Does the system have Security Authorization (SA)?

No
Yes
No
Agency
Contractor
POC Title

Health Communications
Specialist

POC Name

Diana Finegold

POC Organization NINR
POC Email

[email protected]

POC Phone

301-496-0209
New
Existing
Yes
No

8b Planned Date of Security Authorization
Not Applicable

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11 Describe the purpose of the system.

Describe the type of information the system will
collect, maintain (store), or share. (Subsequent
12
questions will identify if this information is PII and ask
about the specific data elements.)
Provide an overview of the system and describe the
13 information it will collect, maintain (store), or share,
either permanently or temporarily.
14 Does the system collect, maintain, use or share PII?

15

Indicate the type of PII that the system will collect or
maintain.

The purpose of the system is to evaluate the effectiveness of
the second phase of NINR's pediatric palliative care
communications campaign, Palliative Care: Conversations
Matter®. This second phase evaluation involves collecting
feedback from parents and caregivers to ensure that the
campaign is effective, relevant, and useful for this specific
audience. The data collection vendor, Edge Research, will
program and deploy the online surveys through opt-in online
survey sample providers and host a secure website for the
survey administration. The sample size for the survey is
approximately 150 individuals (parents and caregivers).
The system will collect information on general awareness,
knowledge, and perceptions of pediatric palliative care;
awareness of the communications campaign and its materials;
behaviors related to seeking out pediatric palliative care
Information provided by respondents will be used only by the
researchers conducting this study and will not be disclosed
except as required by law. Respondents will not be asked any
Yes
No
Social Security Number

Date of Birth

Name

Photographic Identifiers

Driver's License Number

Biometric Identifiers

Mother's Maiden Name

Vehicle Identifiers

E-Mail Address

Mailing Address

Phone Numbers

Medical Records Number

Medical Notes

Financial Account Info

Certificates

Legal Documents

Education Records

Device Identifiers

Military Status

Employment Status

Foreign Activities

Passport Number

Taxpayer ID
Race
Ethnicity
Gender
Age Range
Employees
Public Citizens
16

Indicate the categories of individuals about whom PII
is collected, maintained or shared.

Business Partners/Contacts (Federal, state, local agencies)
Vendors/Suppliers/Contractors
Patients
Other

17 How many individuals' PII is in the system?

100-499

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18 For what primary purpose is the PII used?

19

Describe the secondary uses for which the PII will be
used (e.g. testing, training or research)

To better understand the audience for the Palliative Care:
Conversations Matter campaign and identify any unmet needs
in terms of audience and underserved populations.
N/A

20 Describe the function of the SSN.

N/A

20a Cite the legal authority to use the SSN.

N/A

21

Identify legal authorities governing information use
5USC 301, DR
and disclosure specific to the system and program.

22

Are records on the system retrieved by one or more
PII data elements?

Yes
No
Directly from an individual about whom the
information pertains
In-Person
Hard Copy: Mail/Fax
Email
Online
Other
Government Sources

23

Within the OPDIV
Other HHS OPDIV
State/Local/Tribal
Foreign
Other Federal Entities
Other

Identify the sources of PII in the system.

Non-Government Sources
Members of the Public
Commercial Data Broker
Public Media/Internet
Private Sector
Other
23a

Identify the OMB information collection approval
number and expiration date.

24 Is the PII shared with other organizations?
Describe the process in place to notify individuals
25 that their personal information will be collected. If
no prior notice is given, explain the reason.
26

Is the submission of PII by individuals voluntary or
mandatory?

OMB 0925-0683, Expiration 10/31/16.
Yes
No
There will be a note in the survey invitation.
Voluntary
Mandatory

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Describe the method for individuals to opt-out of the
collection or use of their PII. If there is no option to
Survey respondents are not required to answer any of the
27
object to the information collection, provide a
questions, including those related to PII.
reason.
Describe the process to notify and obtain consent
from the individuals whose PII is in the system when
major changes occur to the system (e.g., disclosure
28 and/or data uses have changed since the notice at
the time of original collection). Alternatively, describe
why they cannot be notified or have their consent
obtained.
Describe the process in place to resolve an
individual's concerns when they believe their PII has
29 been inappropriately obtained, used, or disclosed, or
that the PII is inaccurate. If no process exists, explain
why not.
Describe the process in place for periodic reviews of
PII contained in the system to ensure the data's
30
integrity, availability, accuracy and relevancy. If no
processes are in place, explain why not.

N/A. This is not a system. It is an electronic information
collection.

NINR will not have any contact with individual respondents.
The survey will be deployed through a national sample and
results will be reported in aggregate.
No reviews are planned since NINR will not be looking at the
data on an individual level.

Users
Administrators
31

Identify who will have access to the PII in the system
and the reason why they require access.

Developers
Contractors

Contractors are deploying the survey.

Others
Describe the procedures in place to determine which Password protected logins are required to access information.
32 system users (administrators, developers,
The contractor limits access to files with PII to only those
contractors, etc.) may access PII.
individuals who work on the account (approximately 4 people).
Describe the methods in place to allow those with
33 access to PII to only access the minimum amount of
information necessary to perform their job.
Identify training and awareness provided to
personnel (system owners, managers, operators,
contractors and/or program managers) using the
34
system to make them aware of their responsibilities
for protecting the information being collected and
maintained.
Describe training system users receive (above and
35 beyond general security and privacy awareness
training).
Do contracts include Federal Acquisition Regulation
36 and other appropriate clauses ensuring adherence to
privacy provisions and practices?

Password protected logins are required to access information.

Privacy Act training is provided to all who would potentially
have access to the database.

N/A
Yes
No

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Describe the process and guidelines in place with
37 regard to the retention and destruction of PII. Cite
specific records retention schedules.

The contractor only retains its data to the extent necessary for
each project. They do not reference personal information in
any of their analyses or reporting. And they remove PII from
their servers and network within 1 year of the close of the
project.

Describe, briefly but with specificity, how the PII will
38 be secured in the system using administrative,
technical, and physical controls.

During a project, data files with PII are stored on a server that
resides in a secure location. The contractor has firewalls in
place and employs strong passwords on all company
machines. The contractor workstations automatically log off
after inactivity. In addition, they limit access to files with PII to
only those individuals who work on the account.

General Comments

OPDIV Senior Official
for Privacy Signature

The system will collect demographic information such as age, sex, race/ethnicity. But none of this
information will be collected in conjunction with other personally identifiable information such as name,
social security number, physical address, or telephone number.

Ralph D.
French -S

Digitally signed by Ralph D. French -S
DN: c=US, o=U.S. Government,
ou=HHS, ou=NIH, ou=People,
0.9.2342.19200300.100.1.1=00122423
38, cn=Ralph D. French -S
Date: 2016.10.26 15:58:35 -04'00'

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