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Privacy Impact Assessment Form
v 1.47.4
Status Draft

Form Number

F-50666

Form Date

Question

Answer

1

OPDIV:

CDC

2

PIA Unique Identifier:

P-6899561-396120

2a Name:

3/22/2017 8:58:16 AM

National Program of Cancer Registries/Cancer Surveillance
System (NPCR-CSS)
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.

Operations and Maintenance
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)?

8b Planned Date of Security Authorization

No
Yes
No
Agency
Contractor
POC Title

NCCDPHP ISSO

POC Name

Cindy Allen

POC Organization NCCDPHP
POC Email

[email protected]

POC Phone

770-488-5388
New
Existing
Yes
No
August 31, 2018
Not Applicable

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9

Indicate the following reason(s) for updating this PIA.
Choose from the following options.

PIA Validation (PIA
Refresh/Annual Review)
Anonymous to NonAnonymous
New Public Access
Internal Flow or Collection

Significant System
Management Change
Alteration in Character of
Data
New Interagency Uses
Conversion

Commercial Sources

10

Describe in further detail any changes to the system
that have occurred since the last PIA.

11 Describe the purpose of the system.

The National Program of Cancer Registries Cancer Surveillance
System (NPCR-CSS) collects, records, and analyzes patient
cancer data and generates statistical outputs and reports on
cancer incidence in 46 states, the District of Columbia, Puerto
Rico, Virgin Islands, and U.S. Pacific Island jurisdictions. NPCRCSS also aggregates and disseminates cancer incidence data.

NPCR-CSS collects, aggregates and shares cancer incidence
data including:
-cancer patient histology and behavior
-patient date of birth
-state/county of residence
-date of diagnosis
-race/ethnicity
-age at diagnosis
-gender
Describe the type of information the system will
-stage at diagnosis
collect, maintain (store), or share. (Subsequent
-first course of treatment
12
questions will identify if this information is PII and ask -postal code of residence
about the specific data elements.)
-Census Tract of residence
Also, the system collects users' names, email addresses, and
telephone numbers in order to set up the user accounts. CDC
employees do not access the system.
Cancer registries' staff and CDC's contractor staff authenticate
to the system via user name and password. These user
credentials are permanently stored by the system until the
project ends.

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NPCR-CSS is an external, web-based system which allows CDC
to receive de-identified data that will enable public health
professionals to understand and address the cancer burden
more effectively. NPCR–CSS gives CDC the ability to provide:

Provide an overview of the system and describe the
13 information it will collect, maintain (store), or share,
either permanently or temporarily.

(1) greater access to cancer data for the public, scientists, and
policymakers (national public use data files of cancer
incidence);
(2) more accurate and more stable estimates of cancer
incidence for population groups, including racial and ethnic
minorities, medically underserved groups, and other
subpopulations; and
(3) information for regional and national analyses to more
accurately identify geographic variability in cancer treatment
practices as a means to assess use of state-of-the-art cancer
treatment.
NPCR-CSS contains PII information such as name, business
email address and phone (used to establish account); user
credentials; patient date of birth, state and county of
residence; postal code of residence; Census Tract of residence;
race/ethnicity; gender; age at diagnosis; and medical
information (e.g., cancer patient histology and behavior; ; date
of diagnosis; stage at diagnosis; and first course of treatment) .
Yes

14 Does the system collect, maintain, use or share PII?

15

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

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
County and postal code of residence
Census Tract of Residence
user credentials
race/ethnicity
gender

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Employees
Public Citizens
16

Business Partners/Contacts (Federal, state, local agencies)

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

Vendors/Suppliers/Contractors
Patients
Other

17 How many individuals' PII is in the system?

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)

1,000,000 or more
Date of birth is used to calculate patient age; cancer incidence
and survival are in turn then analyzed by age.
Business contact information (name, email address and phone
number) is used to set up user accounts.
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 Public Health Service Act, Section 301, "Research and
and disclosure specific to the system and program.
Investigation" (42 U.S.C. 241).

22

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

Yes
No
Published:

Identify the number and title of the Privacy Act
System of Records Notice (SORN) that is being used
22a
to cover the system or identify if a SORN is being
developed.

09-20-0160 Records of Subjects in Health
Promotion and Education Studies

Published:

Published:
In Progress

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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?

0920-0469 (06/30/2019)
Yes
No
Each State has a law in place that mandates cancer information
reporting to the central cancer registry. State Health
Departments routinely collect cancer registry data which
includes PII. At the individual central cancer registry level,
various mechanisms are in place for notification processes.
Notification to individuals of the collection by the State varies,
with most states not notifying individuals of the data
collection. The Public Health Service Act allows CDC to receive
the data without additional notification to the Individuals.
Voluntary
Mandatory

Describe the method for individuals to opt-out of the
Since each state mandates cancer incidence reporting to the
collection or use of their PII. If there is no option to
27
central cancer registry, individuals may not opt-out of the
object to the information collection, provide a
collection or use of their PII. Therefore, no process are in place.
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
There is no direct interaction with individual patients.
28 and/or data uses have changed since the notice at
However, cancer registry users (i.e., reporting healthcare
the time of original collection). Alternatively, describe entities) are notified by email when major changes occur.
why they cannot be notified or have their consent
obtained.

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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.

The data is owned by the States. Individual patients are not
made aware of CDC receiving the data from the States.
Therefore, CDC does not have a process in place.
Cancer registry users can contact the CDC project officer if they
have concerns in regards to their contact information.
Patient-level data are de-identified before submission to CDC
except for date of birth. Therefore, periodic reviews are not
warranted.
Contact information for cancer registry users are reviewed
annually.
Users

upload/download data files

Administrators
31

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

Developers
Contractors

Developers are contractor staff;
Receipt, analysis, and other functions
may warrant review of raw data

Others
Access is only granted by the contractor's security steward
based on the roles of individuals processing or analyzing those
files that contain PII. All users must sign agreements before
accessing those files. Security/Confidentially audits are
conducted on the system and individuals.
Describe the procedures in place to determine which
USERS: All user accounts are approved by CDC project officers
32 system users (administrators, developers,
before creation. Registry users only have access to PII they
contractors, etc.) may access PII.
upload to the system. Once uploaded, file(s) in registry specific
folders will not be accessible through the web for added
security.
CONTRACTORS: Contract staff have responsibility for
processing and analyzing patient cancer data.

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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.

Role based access controls are in place to ensure the concept
of “least privilege” is implemented. Based on the technical
director and project director’s assessment of each team
member, the network administrator creates and implements
network access groups. The access groups include managers,
system staff, data analyst, web developer, database
administrator, statisticians working on data validation,
processing, visualization etc. Each individual assigned to work
on the project is assigned to a group associated with their role.
Access rights are then derived from that role. The project
network directory structure is organized such that access to
each sub folder is restricted to one or more network access
groups, effectively ensuring that an individual’s access to data
containing PII is restricted only to network areas pertaining to
tasks the individual is required to perform. In addition to that,
PII is only available through a process that requires users to
sign data use agreements every year before data collection
starts.
The contractors that process these data files are trained in
standards and procedures to maintain the security and
confidentiality of PII. Audits are conducted throughout the
year to ensure adherence to these standards.

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?

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

By signing a formal agreement that describes the penalties for
failing to observe the security requirements, project members
are made aware of the seriousness of project security. The
confidentiality agreement at the beginning of each project
year, renewing the team member's awareness of security
requirements. Security training is conducted periodically and
scheduled for the time that project staff renew their
confidentiality agreements. The training includes a review of
the security requirements and procedures for the project,
including relevant portion of the security plan. Project staff are
provided with a copy of the security plan at each security
training session.
None.
Yes
No
Records are retained and disposed of in accordance with the
CDC Records Control Schedule for Scientific and Research
Records. Records are maintained at CDC for two years. Source
documents are disposed of when no longer needed by
program officials. Personal identifiers may be deleted from the
records when no longer needed in the study as determined by
the system manager, and as provided in the signed consent
form, as appropriate.

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TECHNICAL:
State cancer registries submit encrypted data files to the
contractor. Upon receipt, they are encrypted when the files are
exposed to the Internet, there is prompt backup to archival
media, and there is strict management oversight of all
processes to ensure that confidentiality of the data is
maintained.
PHYSICAL:
Computer servers are located in a facility with restricted access.

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

ADMINISTRATIVE:
Access is only granted by security steward based on roles of
the individuals processing or analyzing those files that contain
PII. The contractors that process these data files are trained in
standards and procedures to maintain the security and
confidentiality of PII. Audits are conducted throughout the
year to ensure adherence to these standards.
By signing a formal agreement that describes the penalties for
failing to observe the security requirements, project members
are made aware of the seriousness of project security. The
confidentiality agreement at the beginning of each project
year, renewing the team member's awareness of security
requirements. Security training is conducted periodically and
scheduled for the time that project staff renew their
confidentiality agreements. The training includes a review of
the security requirements and procedures for the project,
including relevant portion of the security plan. Project staff are
provided with a copy of the security plan at each security
training session.

General Comments

OPDIV Senior Official
for Privacy Signature

Beverly E.
Walker -S

Digitally signed by
Beverly E. Walker -S
Date: 2018.08.20 16:23:04
-04'00'

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