data elements revised

HRSA Patient Navigation Demonstration Program

Common Data Elements
Individual Patient Characteristics
Patient Navigator Data
Navigation Administration Data
(Quarterly Report)

FINAL

NOVA Research Company
REVISED June 25, 2009

Table of Contents
PATIENT CHARACTERISTICS (TABLE 1)
Navigated Patient Socio-Demographic Characteristics ...................................................................2
Navigated Patient Chronic Disease Information..............................................................................5
TRACKING LOG (TABLE 2)
Navigated Patient Tracking Log Introduction ...............................................................................10
Navigated Patient Tracking Log Data Elements ............................................................................11
Navigated Patient Tracking Log Barriers ......................................................................................15
PATIENT NAVIGATOR CHARACTERISTICS (TABLE 3)
Patient Navigator Socio-Demographic Characteristics .................................................................21
PATIENT VISITS (TABLE 4)
Report of Patient Visits .................................................................................................................25
ADMINISTRATIVE DATA (QUARTERLY REPORT)
Quarterly Report Template ............................................................................................................26
Site–specific data specifications are not included in this document.

Page 1 of 31

Introduction to Revised Data Elements
Several revisions have been made to the Data Elements as a result of information gained from
grantee discussions and the Peer Learning Workshop.
Every attempt has been made to finalize these common data elements. In order to facilitate
review, revised data elements have been highlighted in yellow.
Data elements that have been deleted from this version:
Data Source for patient demographics, including “other data source”
Stage of Disease (this has been merged into navigated disease variable)
Point of Entry (this has been merged into the navigated disease variable)
Data source has been added to the Visit Table.

Page 1 of 31

Socio-Demographics
Data Element

Definition

Response Values

1.

Subject ID

Unique Program-level ID code for each subject (i.e., navigated <<10-digit code>>
patient).
First of ten digits should be assigned as follows:
1=Palmetto
The subject ID is a 10-digit number that consists of two
2=Texas Tech
concatenated ID values — a 1-digit Site ID (S), and a
3=CMAP
9-digit unique number representing the patient
4=Lutheran
(PPPPPPPPP), to be assigned by the local site.
5=Memorial/South Broward
All Subject IDs will follow the format: SPPPPPPPPP
6=Northeast Valley
(e.g., the first Subject admitted at the ABC Family Health
Center associated with the CMAP site could be assigned the
9 digits assigned by site.
following Subject ID number: 3123456789; the second subject
admitted at this clinic could be assigned 3123456790.)

2.

Gender

Patient’s gender

1=Male
0=Female

3.

Birth Year

Calendar year of birth

<>

4.

Ethnicity

Patient’s ethnicity

1=Hispanic or Latino
0=Non-Hispanic

5.

Race

Patient’s race

1=White
2=Black/African American
3=Asian
4=Native Hawaiian/Pacific Islander
5=American Indian/Alaska Native

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Data Element

Definition

Response Values

6.

Primary Language

Primary or preferred language spoken at home

1=English
2=Spanish
3=Haitian Creole
4=Chinese
5=Vietnamese
6=Japanese
7=German
8=Italian
9=Russian
10=French
11=Other

7.

Primary LanguageOther

Patient’s primary language if OTHER in previous question

<>

8.

Education

Patient’s highest educational attainment

1=8th grade or less
2=Some high school
3=High school diploma (including equivalency)
4=Some college/vocational after high school
5=Associate degree
6=College graduate
7=Graduate or professional degree

9.

Household Size

Number of persons in household, including self

<>

10.

Household Income

Household Income

1=Less than $10,000
2=$10,000 to $19,999
3=$20,000 to 29,999
4=$30,000 to $39,999
5=$40,000 to $49,999
6=$50,000 or more

11.

ZIP Code

First 3 digits of ZIP code

<>

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Data Element

Definition

Response Values

12.

Health Care
Coverage/Funding

Does patient have any type of health care coverage or funding [Choose ALL that apply]
for visits?
No insurance
Medicare
Other government-sponsored health plans include military
Medicaid
health, Tri-care, Indian Health Service, state–sponsored
Private Insurance
health plan, VA.
Other government-sponsored plan
Single Service Plan is a plan that covers only 1 problem or a
Single Service Plan
series of visits (e.g., cancer screening/dental/care related to
Other
accident/vision/mental health/AIDS)

13.

OTHER Care Coverage OTHER health coverage/funding specified in previous question <>
Status

14.

Pharmacy Assistance

Does this patient receive pharmacy assistance (prior to
navigation start)?

1= Yes
0= No

15.

Hospital Utilization

Did the patient report a hospital stay in the last year?

0= None
1= 1 stay
2= More than 1 stay

16.

ER Utilization

Did the patient report an ER visit in the year prior to
navigation enrollment?

0= No
1= 1 visit
2= More than 1 visit

17.

Established in Primary Does the patient have an established primary care provider?
1=Yes
Care
0=No
An established primary care provider is a "medical home" for a
patient, ideally providing continuity of health care. This will
include family physicians, pediatricians, and internists. A
patient is considered established in primary care if the patient
has made more than one visit to the provider within the past
year.

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Chronic Disease Information

Data Element
18.

Navigated Chronic
Disease(s)

Definition

Response Values

Chronic disease(s) that are the focus of patient
navigation. Indicate the stage of the navigated disease(s) [Choose ALL that apply]
that the patient is presenting with.
Other diseases may be present; however, the disease(s) Diabetes
specified here is/are the disease(s) that are a central
Diabetes
focus of the navigation program.
Gestational diabetes
At risk/family history of diabetes
Hypertension
Positive Screen for hypertension
Diagnosed hypertension
Congestive Heart Failure (CHF)
Diagnosed CHF
Cardiovascular Disease (CVD)
At risk/family history CVD
Diagnosed cardiovascular disease
Asthma
Diagnosed Asthma
Obesity
Adult Obesity
Child/Adolescent Overweight/Obesity
Depression
Positive Screen for Depression
Breast Cancer
Average risk, missed mammogram appointment
Abnormal finding related to breast cancer
Stage I breast cancer
Stage II breast cancer
Stage III breast cancer
Stage IV breast cancer

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Data Element

Definition

Navigated Chronic
Disease(s) (continued)

Response Values
Cervical Cancer
Average risk, missed pap appointment
Abnormal finding related to cervical cancer
Stage I cervical cancer
Stage II cervical cancer
Stage III cervical cancer
Stage IV cervical cancer
Colorectal Cancer
Missed FOBT card return
Abnormal finding related to colorectal cancer
Stage I colorectal cancer
Stage II colorectal cancer
Stage III colorectal cancer
Stage IV colorectal cancer
Other

19.

Other Navigated
Disease

Identify the other navigated disease(s), if other
navigated disease specified in previous question

<>

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Data Element
20.

Comorbid Conditions

Definition
Chronic comorbid conditions that could complicate
patient navigation.
A full review of medical records is not necessary; please
check those conditions known by the navigator to
increase the complexity of navigation.

21.

Comorbid Condition—
Other

Patient’s comorbid condition if OTHER specified in
previous question

Response Values
[Choose ALL that apply]
Myocardial Infarction
Congestive Heart Failure
Hypertension
Peripheral Vascular Disease
Cerebral Vascular Accident
Chronic Obstructive Pulmonary Disease
Asthma
Cumulative Trauma Disorders
Ulcer
Liver Disease
Diabetes Mellitus
Diabetes Mellitus with complications
Hemiplegia or Paraplegia
Renal disease
HIV/AIDS
Any tumor
Leukemia
Diagnosed depression
Dementia
Other diagnosed mental illness
Chronic Pain
Pregnancy
Sickle cell disease
Other
<>

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Data Element
22.

Date Associated with
Non-Cancer Primary
Chronic Illness

Definition

Response Values

This is the date associated with the primary NONCANCER chronic condition that is the target of
navigation.

<>

This should be the date that identifies the patient for
navigation, and should precede the start of navigation.

OR 01/01/9996 if cancer is the only navigated disease

If a patient is being navigated for more than one chronic
disease, pick the primary disease being navigated.
For patients that have a diagnosed condition, this should
be the date of diagnosis. If the exact date is unknown,
please use the information available; estimates are OK.
For patients navigated after an abnormal screen, this is
the date of their screen.
For patients navigated to screening, this is the date of
the missed screening appointment or the date that they
became identified as at-risk.
INFORMATION ABOUT NAVIGATION FOR CANCER
SHOULD BE RECORDED IN FOLLOWING ELEMENTS
INSTEAD.
23.

Type of Date
Associated with NonCancer Primary
Navigated Chronic
Illness

This variable describes the date entered in the previous
data element. It is related ONLY to non-cancer chronic
illnesses.

1=Date diabetes diagnosed
2=Date gestational diabetes diagnosed
3=Date identified at risk for diabetes

4=Date of positive hypertension screen
The element provides information about the chronic
disease associated with the date, as well as where in the 5=Date hypertension diagnosed
care continuum the date occurs.
6=Date congestive heart failure diagnosed
Notably, multiple chronic diseases are being navigated
for a single patient, so the date must be the one that is
7=Date cardiovascular disease (CVD) diagnosed
relevant to the primary chronic illness navigation target. 8=Date identified at risk/family history CVD
9=Date asthma diagnosed
10=Date adult obesity diagnosed
11=Date child/Adolescent Overweight/Obesity diagnosed
12=Date positive Screen for Depression
13=NO CHRONIC DISEASE DATE; only cancer is navigated
14=Other date type

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Data Element
24.

Other Date Type
Associated with NonCancer Primary
Navigated Chronic
Illness

25.

Date Associated with
Navigated Cancer

Definition

Response Values

The variable contains text describing the non-cancer
chronic illness date, specifying the “other date type”
indicated in the date element above.

<>

This should be the date that identifies the patient for
navigation of cancer, and should precede the start of
navigation.

<>

The date may be associated with a broken screening
appointment, an abnormal screening finding, or
diagnosis, depending on what point the patient is enters
the continuum of care.

OR 01/01/9996 if a non-cancer disease is the only disease navigated
(so there is no cancer date).

THE DATE RELEVANT TO DISEASES OTHER THAN
CANCER SHOULD BE ENTERED IN THE PRECEDING DATA
ELEMENT.
26.

Type of Date
Associated with
Primary Navigated
Cancer

This element describes the date entered in the previous
data element related to the cancer date.
The element provides information about where in the
care continuum the date occurs.

1=Date of broken screening appointment or FOBT card due date
2=Date of abnormal finding related to cancer
3=Date of cancer diagnosis
4=No cancer navigated (other chronic diseases navigated)
5=Other date

27.

Other Date Type
Associated With
Primary Navigated
Cancer Date

28.

PNDP Enrollment Date

29.

2 PNDP Enrollment
Date If Applicable

nd

This is a description of the “other” type of date
associated with navigated cancer, specified in the
previous data element.

<>

Month, date, and year that patient was enrolled into
PNDP
This is the (a) date of referral to PN,
or
(b) date that PN found out that a patient was eligible.

<>

If a patient is enrolled a second time, this is the date and <>
year that a patient was re-enrolled in the navigation
program. This date should be filled out only for patients
that completed navigation and re-entered for a different
condition or a re-occurrence of a condition

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Data Element

Definition

Response Values

30.

Disease(s) Navigated for
Second Enrollment Date

Description of disease(s) involved in second enrollment

<>

31.

Response to Outreach

Did the patient enter the program as a result of an
outreach activity undertaken by the program?

1= Yes
0= No

32.

Patient Navigation
Program Status

Is navigation complete, or will patient continue to be
tracked within navigation program?

1=Navigation in progress
2=Patient refused navigation [End data collection]
3=Patient cannot be reached/Lost to navigation [End data collection]
4=Navigation complete [End data collection]
5=Patient ineligible (no longer receiving care at organization) [End
data collection]

33.

Reason Navigation is
Complete

Specify the type of resolution if “4” selected above.

1=Screening complete; negative finding
2=Followup test complete; negative finding
3=Completed treatment
4=Achieved other target, specify
6=Not applicable (navigation is not complete)

34.

Other Target

Specify “other” target if “4” selected above

<>

35.

Date of Disenrollment The date that a decision is made not to follow a patient
as part of the navigation program.

<>

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PNDP Data Elements – Navigated Patient Tracking Log

Navigated Patient Tracking Log
Collecting Patient Barriers and
Navigator Activities/Outcomes
Purpose
The purpose of the Navigated Patient Tracking Log is to collect data on all Patient Navigator
Activities related to an individual patient, including interactions between navigators and:
(1) patients,
(2) health care providers,
(3) community service providers, and
(4) other service providers.
In addition to information about the type of interaction, the log will collect information on
barriers addressed during the interaction and health care accessed by the patient.

Data on site outreach to groups of people prior to navigation (which involves the assessment
of barriers and navigator actions to address those barriers) will be collected through the
Quarterly Report.
Description
Every time a navigator has contact with another person, be it a patient, health care provider,
community-based organization, or social service provider, the patient navigator will complete a
navigation tracking log record.
Each log entry or record will include:
Subject ID, Navigator ID, and Date
Characteristics of Communication (type, persons involved, reason)
Activity Type
Barriers Addressed
Referrals Facilitated
Navigators will also record the circumstances under which a patient is released from the
navigation program.

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PNDP Data Elements – Navigated Patient Tracking Log

Data Elements, Definitions, and Response Values

Data Element
36. Subject ID

Definition

Response Values

Unique Program-level ID code for each subject (i.e., navigated patient).

<<10-digit code>>

This is the same variable described in patient characteristics, page 3.
The first of the ten digits corresponds to the site, while the remaining 9 digits
are assigned by the site.

First of ten digits should be assigned as
follows:
1=Palmetto
2=Texas Tech
3=CMAP
4=Lutheran
5=Memorial/South Broward
6=Northeast Valley
Next 9 digits assigned by site.

37.

PN ID

Unique ID code for each Patient Navigator. This is the same identifier described
on page 24.
The Patient Navigator ID is a 4-digit number that consists of two concatenated
ID values including the 1-digit Site ID (S) and a 4-digit number representing
the navigator (NNNN).
All IDs will follow the format: SNNNN

<<5-digit code>>

[E.G., The first navigator at the Lutheran site could be assigned the following
ID: 41234
The second navigator at the Lutheran site could be assigned the following ID:
41235
NOTE: The PN ID cannot be reassigned if a navigator leaves the PNDP
program.
38.

Navigation Activity Date

Calendar date when PN communicated with a patient or patient’s
family/caregiver or took action on behalf of the navigated patient.

<>

39.

Start Time of Activity

Time and date can be used to determine a unique communication activity.

<>

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PNDP Data Elements – Navigated Patient Tracking Log

Data Element
40.

Communication Type

Definition

Response Values

ONLY ONE TYPE OF COMMUNICATION SHOULD BE CHECKED FOR EACH
ACTIVITY
Indicate the type of communication.

CHOOSE ONLY ONE

<>

1= Telephone conversation
2= Home meeting
“Communication” includes face-to-face meetings, telephone calls, and/or written 3= Face-to-face meeting at clinic
4= Written communication/email
communication (email, letter, forms, & other mail) between the patient,
patient’s family, medical or non-medical staff, or community
5= Accompaniment to health care visit
agency/organization staff AND the navigator. Communication may be
6= Accompaniment to social services site
initiated by the navigator or by other persons.
7= Accompaniment to community
organization
8= Other
“Accompaniment” means the navigator accompanied patient to appointment.
9= No contact on call for patient
Others such as family members, physicians, nurses, & other providers may or
may not be present during the encounters with navigated patients.
10=Message left on call for patient
11=Message left on call for other
41.

Other Type of
Communication

Specify “other” type of communication

42.

Person(s) Involved in
Communication

Indicate who the communication was with.

1=
2=
“Social Network” includes family, friends, neighbors, church, as appropriate.
3=
4=
“Health care provider” includes physicians, nurses, physical therapists, dentists, 5=
pharmacists, social workers, and mental health providers providing services
6=
within the health care setting.

Patient
Social network (family, friends, etc.)
Healthcare provider
Healthcare staff
Community resource staff
Other

“Healthcare staff” includes receptionists, hospital/clinic billing personnel, other
patient navigators, and referral staff in health care facilities (e.g., hospitals,
clinics).
“Community resource staff” includes staff from ACS, state agencies, housing
agencies, transportation agencies, social workers in outside organizations, food
bank, utility companies, legal aid, etc.

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PNDP Data Elements – Navigated Patient Tracking Log

Data Element
43.

Other Type of Person
Involved

44.

Reason For
Communication

Definition
Specify “other” type of person if “6” selected above.

Response Values
<>

CHOOSE ALL THAT APPLY
Reminder call
“Reminder call” indicates a telephone call to prompt a patient to go to an
Patient education/Identify patient barriers
appointment.
Schedule health care appointment
“Patient Education” indicates that PN provided patient education, helped patient Schedule PN appointment
understand literature, or assisted in the education of the patient by another Schedule other appointment type
service provider OR worked with patient to identify barriers to treatment or
Arrange for medical records
screening.
Arrange for transportation
“Schedule Health Care Appointment” indicates that PN helped patient schedule Follow up after cancelled appointment
appointment for diagnostic, follow-up, or specialty health care.
Follow up after missed appointment
“Schedule PN Appointment” indicates that PN is working with the patient or
Follow up to provide info on test/finding
other person to schedule a meeting with the navigator.
Routine/scheduled follow up
Other reason
“Schedule Other Appointment” indicates that PN helped patient schedule
appointment with someone other than a health care provider. Examples are
community agencies (e.g., social services office) and social network (e.g.,
patient’s family members)
What is the reason for the communication?

“Arrange for Medical Records” indicates that PN ensured that medical records
were available when patient was referred to specialist or community
agency.
“Arrange for transportation” means navigator arranged service for patient
including transportation, childcare, medical interpreter, etc.
“Follow Up After Missed Appointment” occurs after the patient misses a health
care or other type of appointment.
“Follow Up to Provide Info on Test/Finding” means that contact is initiated for
the purpose of discussing the results of a screening or diagnostic test.
“Routine/scheduled Follow Up” means navigator is checking on a patient, either
in predetermined intervals, after an appointment, during a management
phase, or at another time. Note that follow up activities can be used to
check on the status of a patient with any person.

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PNDP Data Elements – Navigated Patient Tracking Log

Data Element

Definition

Response Values

45.

Other Reason for
Communication

Specify “other” reason for communication.

<>

46.

Patient Navigator
Activities

“Coordinate Health Care Services” indicates that PN is assisting patient with
services and provider referrals for patient seeking diagnosis assistance, or
treatment.

CHOOSE AT LEAST ONE
Coordinate health care services/referrals
(screening and/or treatment)
Facilitate involvement of community
organizations
Notify and coordinate clinical trials
Assist patient to identify/overcome barriers
Coordinate health care coverage
Assist in seeking preventative care
Proactive navigation

“Facilitate Involvement of Community Organizations” indicates that the PN is
assisting patient with gaining access to better care by coordinating efforts with
other groups.
“Notify and Coordinate Clinical Trials” indicates that PN is facilitating the
enrollment of eligible patients in trials.
“Assist Patient to Overcome Barriers” indicates that PN is anticipating,
identifying, and helping patient overcome barriers to ensure prompt diagnosis
and treatment.
“Coordinate Health Care Coverage” indicates that PN is coordinating with health
insurance ombudsman programs to provide patient with information on health
care insurance, coverage, savings programs, and/or other publicly funded
programs.
“Assist in Seeking Preventative Care” indicates that the patient has not been
diagnosed with a chronic disease, and the PN is assisting patients seeking
prevention or screening care in order to reduce the patient’s risk of developing a
chronic disease.
“Proactive Navigation” indicated that the navigator is ensuring that there are no
new barriers and that the patient is experiencing continuity of care.

15

PNDP Data Elements – Navigated Patient Tracking Log

Data Element

Definition

47.

Barriers

What barriers were addressed in this activity?

48.

Other Barriers

Specify “other” type of barrier

Response Values

CHOOSE ALL THAT APPLY
Transportation
NOTE: A single activity may address multiple barriers.
No established primary care provider
Location of health care
Example: Patient is being navigated for abnormal mammogram and does not
Out of town/country
have transportation to clinic for diagnostic mammogram and biopsy. The barrier Patient disability
would be “1=transportation.”
System problem with scheduling care
Lack of access to a specialist
A detailed list and description of the navigation barriers follows this section.
Fear
Language/interpreter
Health literacy/lack of information
Communication concerns with medical
personnel
Medical/mental health comorbidity
Insurance/high co-pay
Financial problems
Employment issues
Cultural/personal beliefs and perceptions
Attitudes toward providers
Housing
Childcare/family care issues
No specific barrier—maintain relationship
Other

16

PNDP Data Elements – Navigated Patient Tracking Log

Data Element
49.

Referrals Facilitated
During Activity

Definition
These are the services to which the patient has been navigated during the
activity recorded on the log.
[These are the navigation targets associated with this particular activity].

Response Values
CHOOSE ALL THAT APPLY
Screening
Diagnostic service after screen
Primary care
Specialist
Pharmacy assistance program
Health care coverage program
Social services
Community resource staff
(Specify type: __________)
Clinical trial
Health education/disease management
program
Other

50.

Type of Community
Organization

Specify type of community organization if “Community Resource Staff” selected
above.

51.

Other referral assisted
(Navigation Target)

Specify other target if “11” selected above.

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PNDP Data Elements – Navigated Patient Tracking Log

Patient Barriers – Definitions and Examples of Above Navigator Tracking Log Barriers
Barrier
1.

Transportation

Definition
Difficulty getting from home to where they obtain their health care.

Examples
1. No public transportation
2. Trouble finding someone with a car who can drive them
3. Can’t afford gas

2.

3.

4.

No established primary
care

Patient does not have a primary care provider or other type of
medical home

1.

Patient reports “I don’t have a doctor”

2.

Patient uses Emergency Department for care

Location of Health
Care Provider

Distance from health care facility a barrier even if you have
transportation

1. Care too far to walk

Out of town/country

Patient known to be out of area during their care

1. Incarcerated

2. Geographic barrier (e.g. have to use a freeway)

2. Went home to Mexico to care for family
5.

Patient disability

Disability that makes getting health care difficult

1. Visual or hearing problems
2. Amputation
3. Wheelchair or walker

6.

System problems with
scheduling care

Care provided to patient is not convenient/ efficient to patient’s
needs

1. Put on hold too long to make appointment
2. Had to wait too long and had to leave before
appointment
3. Office hours not convenient
4. Appointment too far into the future

7.

8.

Lack of Access to a
Specialist

Patient cannot schedule an appointment with a specialist

1. There are not enough specialists accepting new patients

Fear

Fear about any aspect of medical care or their health

1. Patient states they are fearful about dying

(Note: PN may explore this, but the patient must identify this as a
barrier)

2. Patient states they are scared about getting the test
done, that test will hurt

2. There are no specialists near where the patient lives

3. Does not include only looks fearful

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PNDP Data Elements – Navigated Patient Tracking Log

Barrier
9.

Language/Interpreter

10. Health Literacy/Lack of
Information

Definition

Examples

Health care personnel and patient do not share a common language
for communication

Difficulty understanding communication from the health care setting

1. Discussion reveals patient does not understand how
insulin will help her
2. Patient misunderstood need for test follow up

11. Communication
concerns with medical
personnel

Barriers to understanding the information given to them by medical
personnel

12. Medical and mental
health comorbidity
(health problem that
co-exists with the
screening abnormality

Medical health problems, or mental health problems (not assessed
by the navigator) that make getting health care difficult

1. Didn’t understand instructions by the receptionist about
next appointment
2. Didn’t understand physician’s instruction about what
the tests were about
1. Have bad arthritis
2. Bad diabetes or heart failure
3. Patient tells you they are severely depressed
4. Patient known to have drug abuse problems
5. Patient known to have alcoholism

13. Insurance, uninsured,
underinsured, high copays

Paying for all aspects of health care a problem

1. Medication not covered even though they have
insurance

14. Financial problems

Dealing with financial problems is interfering with receiving health
care

1. Not being able to pay heat, food bills, making it hard to
arrange health care

15. Employment Issues

Work demands make getting health care difficult

1. No sick time – therefore loses pays

2. No insurance to pay for mammogram or ultrasound

2. Worried will lose job

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PNDP Data Elements – Navigated Patient Tracking Log

Barrier
16. Cultural/personal
beliefs and attitudes

Definition
Personal or cultural beliefs that affect patients’ seeking or receiving
health care as well as the way that they self-manage chronic health
conditions

Examples
1. Modesty
2. Cultural norms for health proscribe seeking care except
in the presence of acute distress
3. Belief a test or radiation treatment is harmful
4. Puts trust in higher power as reason for not completing
recommended care
5. Cultural standards for healthy weight or healthy eating
conflict with medical and dietary recommendations
6. Cultural beliefs related to pride, privacy, and social
status inhibit frank discussions with health care
providers

17. Attitudes towards
providers

Perceptions and beliefs about the health care providers that impact
receiving care

1. Lack of trust in health care system
2. Personal or family prior poor experience with health
care
3. Community’s negative beliefs about health care system

18. Housing

Worrying about where they live during their health care

1. Homeless
2. Has to move to obtain care, because of their care
3. Moving frequently

19. Childcare/Family Care
Issues

Not having childcare when you need for medical care

1. Can’t afford babysitter for your child
2. Can’t find babysitter to look after grandchildren or
other children you take care of
3. Can’t leave elderly parent

20. No specific barrier
addressed—maintain
relationship

Contact with patient to preserve continuity of care. No additional
barriers identified.

21. Other

Please indicate other barrier.

1. Call after first chemo treatment—no barriers
2. Patient reports normal glucose levels—plans to test
HbA1c next month

20

PNDP Data Elements – Navigator Data

Patient Navigator Socio-Demographic Characteristics

Data Element
52.

PN ID

Response Values

Var Definition
Unique ID code for each Patient Navigator. This is the same
identifier described on page 12.
The Patient Navigator ID is a 4-digit number that consists of two
concatenated ID values including the 1-digit Site ID (S) and a 4digit number representing the navigator (NNNN).
All IDs will follow the format: SNNNN

<<5-digit code>>
First of four digits should be assigned as follows:
1=Palmetto
2=Texas Tech
3=CMAP
4=Lutheran
5=Memorial/South Broward
6=Northeast Valley

[E.G., The first navigator at the Lutheran site could be assigned the
following ID: 41234
3 digits for the unique identifier should be assigned
by site.
The second navigator at the Lutheran site could be assigned the
following ID: 41235
NOTE: The PN ID cannot be reassigned if a navigator leaves
the PNDP program.
53.
54.
55.

Gender

Patient Navigator’s gender

1=Male
0=Female

Birth Year

Calendar year of birth

<>

Patient Navigator’s ethnicity

0=Non-Hispanic
1=Hispanic or Latino

Ethnicity

21

PNDP Data Elements – Navigator Data

Data Element
56.

57.

58.

Response Values

Var Definition
Patient Navigator’s race

[Choose ALL that apply]
White
Black/African American
Asian
Native Hawaiian/Pacific Islander
American Indian/Alaska Native

Primary Language

Primary or preferred language spoken at home

1=English
2=Spanish
3=Haitian Creole
4=Chinese
5=Vietnamese
6=Japanese
7=German
8=Italian
9=Russian
10=French
11=Other

Primary Language-Other

Patient Navigator’s primary language if OTHER specified in previous
question

Race

<>

22

PNDP Data Elements – Navigator Data

Data Element
59.

Additional Languages
Spoken

Response Values

Var Definition
Multiple choices

[Choose ALL that apply]
English
Spanish
Haitian Creole
Chinese
Vietnamese
Japanese
German
Italian
Russian
French
Other/Several

60.

Additional Languages
Spoken--Other

Additional Languages Spoken if OTHER/SEVERAL specified in
previous questions.

61.

Education

Patient Navigator’s highest educational attainment

<>

1=8th grade or less
2=Some high school
3=High school diploma (including equivalency)
4=Some college/vocational after high school
5=Associate degree
6=College graduate
7=Graduate or professional degree

23

PNDP Data Elements – Navigator Data

Data Element
62.

Additional Education/
Training

Response Values

Var Definition
Additional Education/Training

CHW = Community Health Worker

63.

Additional Education/
Training-Other

Other additional education/ training relevant to navigator role
specified

64.

ZIP Code

3-digit ZIP Code of Patient Navigator’s residence

[Choose ALL that apply]
None
RN
LPN
Medical Assistant/ Nurses Aide
Social Worker
Phlebotomist
Radiology Technologist
Mammography Technologist
PN certification
Community Health Worker (CHW) certification
CHW training for specific condition (e.g., MCH,
asthma, diabetes, etc.)
Workshops/trainings
Certified Medical Interpreter
Traditional, Spiritual Medicine or Alternative Health
Care Provider
Other
<>

<>

24

PNDP Data Elements – Patient Visit Data

Patient Visits/Activities Related to Navigation Targets
All patient activities that are related to navigation activities are recorded here, including visits to health care providers,
social services, community organizations, and clinical trials. Activity data may be obtained from a number of different
sources, including patient self report, staff report, medical records, billing data, or other administrative databases.
Data Element

Definition

Response Values

65.

Patient Visit ID

This is a unique identifier assigned by the site. It is used to differentiate
between visits that may occur

<<7-digit code>>

66.

Subject ID

This is the same ID used throughout the demonstration, first defined as
element #1 on page 2. All activities in this table will be linked to a navigated
individual in the patient table.

<<10-digit code>>

67.

Date of Visit

Date of the visit or date that services were received, or date of first day of
hospitalization.

<>

68.

Type of Visit

Type of visit or services received.

1=Screening Visit
2=Diagnostic Visit After Abnormal Screen
(may be primary care or specialist visit)
3=Treatment in Primary Care
4=Treatment Oncologist
5=Treatment Endocrinologist
6=Treatment Ophthalmologist
7=Treatment Podiatrist
8=Treatment Mental Health
9=Health Education/Nutrition/
Disease Management
10=Pharmacy Assistance
11=Health Care Coverage Program
12=Social Services
13=Community Organizations
14=Clinical Trial Attempt
15=ER/Urgent Care Visit
16=Hospitalization
17=Other

Please make sure to include all visits that are the focus of navigation.

69.

Type of Other Visit

Visit description if other visit type indicated

<>

25

PNDP Data Elements – Patient Visit Data

70.

Length of Hospitalization

Number of days in hospital.

<>

71.

Visit Data Source

Source of data for visit/activity. Note that there is no need to specify the type
of data source if “other’ is specified.

1=Patient Report
2=Administrative Medical Record
3=Patient and Record
4=Provider Report
5=Other

26

PNDP Data Elements – Program Quarterly Report

Program Quarterly Report Template
[Name of Grantee]
[Period of Performance]
During the period of performance covered by this report, please describe the program activities
that took place in each of the following areas:
Program and Infrastructure Development This Quarter
What planning goals were completed this quarter?
[e.g., training manuals completed, intake forms designed, community organization training
developed, internal experts scheduled to speak].

Training/Orientation/Continuing Education Session(s) This Quarter
What patient navigation training activities were completed this quarter?
[Please include continuing education and ongoing quality improvement for navigators].
Date

Length of Activity

Objective

Number PNs
Attended

Number
Other
Program
Staff
Attended

Comments on Training:

Patient Navigator (PN) Staffing This Quarter
How was the PN program staffed this quarter?
PN Category

Number

Total number PN FTEs
Number PNs working less than 30 hours/week on PN
PNs providing services
PNs hired
PNs resigned or fired
Comments on Staffing:

27

PNDP Data Elements – Program Quarterly Report
Please describe the number of patients assisted through each PN program. If there are multiple
PN programs at your site, each having a different disease focus, please report the number
assisted in each program. For example, please differentiate patients navigated for diabetes
versus those navigated for cancer.
Number of Patients Receiving
Navigation Services
This Quarter

Chronic Disease Focus of Patient
Navigation

Comments on Implementation:

Outreach Activities This Quarter
What types of outreach activities were conducted this quarter (e.g., presentations, health fairs,
group screening, screening reminder calls, brochure/flyer distribution)? When was the outreach
conducted? (Outreach activities can be distinguished from navigation in that outreach activities
are more general and do NOT involve the individual assessment of a patient’s barriers with
repeated patient follow up to meet a specific navigation goal).
What was the disease focus of the outreach (e.g., breast cancer, diabetes, asthma)?
If outreach was a presentation, where did it occur (e.g., church, community center, senior
center, clinic)?
What is the targeted health disparity population/purpose of the outreach?
About how many persons were identified as needing services?
Date

Type

Disease Focus

Location

Targeted Health
Disparity Pop

# Receiving
Outreach

# Screening
Positive for
Services

Comments on Outreach:

28

PNDP Data Elements – Program Quarterly Report
Patient Navigation Recruitment/InReach This Quarter
Please estimate how many calls were made this quarter to recruit patients identified for
navigation into the patient navigation program. For example, multiple calls may have been
made to patients with an abnormal cancer screen, but these patients have not yet agreed to be
navigated. The purpose of this section is to track how much effort is required to get a patient
into the navigation program. This should be an estimate only.
Recruitment Calls

Recruitment Call Target

Comments on recruitment:

Lessons Learned This Quarter
What challenges were encountered, if any, and were there any lessons learned that might be
useful for the future or for other sites? Please indicate what action your program took in
response to the challenge. If no action taken, please specify this.
Challenge

Action Taken

Lesson Learned/ Solutions Found

Comments on Lessons Learned:

Notable Case
Please use this space to describe a case that illustrates the kind of barriers your navigators are
encountering and the actions you are taking to meet patient needs.

Media Coverage
Please use this space to describe any media coverage that your program has generated.

Technical Assistance
Are there any specific areas where technical assistance is needed?

29