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#A1-13 Native Navigators: Engaging

Communities for Cancer Education

Interventions

Thursday, November 1, 2012

1:30 pm to 3:00 pm

Site PIs and Co-Investigators

Linda Burhansstipanov, MSPH, DrPH, Principal Investigator, NACR, CO

Linda U. Krebs, RN, PhD, AOCN, FAAN

Co-Investigator, OCEAN, CO

Noel Pingatore, BS, ITCMI, MI

Daniel Petereit, MD, RCRH, SD

Debra Isham, MPH, MCN, OK

Mark Dignan, PhD, UK, Lexington, KY

3

Introduction /

Background / Overview

Linda Burhansstipanov,

MSPH, DrPH

10 minutes

Native Navigators and the Cancer

Continuum Funded by National Institutes of Health

Awarded to Native American Cancer

Research Corporation; Sub contracts to:

Inter-Tribal Council of Michigan; MI

Rapid City Regional Hospital, SD

Aberdeen Area Tribal Chairman's’

Health Board, SD

Muscogee (Creek) Nation, OK

University of Kentucky, KY

Inter-Tribal Council of Michigan

5 5

Native Navigators and the Cancer

Continuum (NNACC)

Funded by the NIH, National Center on

Minority Health and Health Disparities

[NIH, NCMHD R24MD002811]

The goal is for the Partners to collaborate,

refine, expand and adapt various

navigator/community education programs

to address the Native American

communities’ and patients’ needs

throughout the continuum of cancer care.

6 6

Locations

Great Plains Tribal

Locations of the NNACC Partners -- Community based

participatory research

7

Research Question

Can a Native specific

comprehensive

Navigator-implemented

community cancer

education intervention

improve health

behaviors among

Native American

community members?

Intervention Based on:

Consensus (via Focus Groups)

Informant Interviews (prior to initiation of grant … based on CMAP / MUP)

Tailoring under the control of each Partner

What how does the local NPN help the participant in culturally appropriate manners?

Blessing of mamm van in 1 area, but not necessary in the other areas

8

9

Community Education

Workshops

Topics for 24 hours of Cancer

Continuum education conducted

in partnership with local

American Indian organizations

Prevention - Risk Reduction

Early Detection and Screening

Palliative and Hospice Care

Quality of Life / Survivorship

10

Excerpt of NPN Training topics (125 hours)

Overview of the NNACC

Confidentiality (both NIH course and certification of passing, plus 2-3 hours for study-specific issues and practice

NPN Communication

Navigating the healthcare system (accessing IHS CHS, tribal, urban, etc.)

Instruction on how to teach all of the workshops

11

MoA-O’s Collaborations

Agreements with MoA-Os

Coordinate Family Fun Events:

Baseline data collection and kick-off

3-6 month delayed Event

Follows the completion of 24-hours of education that addresses the full continuum of cancer

Disseminate findings to local communities

12

Outcome

Site-specific (tailored), Native American

Navigator/Community Educator-

implemented cancer education programs

that address the full continuum of cancer

care to:

Increase community knowledge

Increase community screening

Improve access to (timely & quality)

cancer care

Increases visibility / availability of NPN

13

Examples of Lessons

Learned (Challenges and

Innovative Solutions)

Linda U. Krebs, RN, PhD,

AOCN, FAAN

30 minutes

14

Challenges/Solutions/Lessons Learned:

IRBs

IRB processes can take

2-9 months regardless

of previously approved

tribal resolutions or

ordinances.

Plan time accordingly;

involve community;

make contacts early

15


Navigator In-service Training

Start-up training took longer than anticipated

Training sessions

160 hrs for comfort/ comprehension .

200+ hrs for semi-annual updates/refreshers

Some trainings repeated as level of readiness

improved

Videotaping allowed for review of topics and

helped with staff turnover and new staff hires

16


In-service Training

Webinars very effective for meetings &

trainings, but face-to-face is best.

More face-to-face sessions needed

Estimated 3 face-to-face meetings in

year 01, then 2 in year 02, and then 1

yearly

17


MOA-Os

Some not fully prepared to staff events

longer registration times

difficulty tracking ARS keypads.

Rooms not big enough

Food essential but sometimes took away from presentation times

Needed to withhold final payments until all tasks (FFEs & all workshops) completed

18


Community Workshops

Workshops more popular than anticipated.

Many wanted to attend more than 1 series

Some went to 1 series and then brought

family and friends to a 2nd

Those who attended multiple workshops

increased their learning, but…

Could possibly skew the data

19


Community Workshops

Needed more $10 gift cards as partial

compensation for gasoline or baby-sitting

Obtained supplemental funding for one

site to support gift cards for duplicate

participants

More funds would have been beneficial as

interest in workshops increased

20


Sharing Files among Partners

Power Point® slides, interactive materials, and updates had to be shared

Many refinements over grant to:

ARS questions

Notes pages and content

interactive activities (Jeopardy, Bingo, Coyote-Bear)

Accessed thru NACR password-protected page

21


Audience Response System

ARS, once learned, is working well for

evaluations

Because of higher than anticipated

participation, keypads had to be loaned

to some sites

Participants love using ARS, ask for it and

always want to use it


Provider Perspectives Navigator training sessions needed to be:

At a level of understanding for those

with limited medical and cancer care

knowledge

Adjusted to readiness for learning

Ongoing and frequently updated

Support and answers rapidly available


Dissemination Feedback to communities, funders and

others is essential on a routine basis

Site-specific community “feedback flyers”

developed and presented at each FFE

Information shared with clinic managers,

health boards and via formal presentations

Science Advances submitted to share

innovative ideas and solutions

24

Challenges/Solutions/Lessons Learned :

Navigators & Visibility

Education Intervention is successfully

increasing the visibility of the Navigators

Many community members are talking with

the Navigators about screening and other

support

The Community likes the workshops, the

events and LOVES the Navigators!

25

Lessons Learned

Loretta Denny

Muscogee (Creek)

Nation

Lessons Learned

NNACC-MCN = effective way to

Reach the tribal community

Improve cancer risk behaviors and

Screening awareness and anecdotal data

Our tribal citizens were eager to learn and

have shared positive comments about the

program and taking part in screening

Overall increase knowledge scores: 24.6%

Native Navigators and the Cancer Continuum

The Native American population suffers higher rates

of cancer incidence and other chronic diseases

compared to

The general population in Oklahoma

AIs living in other geographic areas.

Some of the participants shared their own personal

or family ordeal with cancer.

97% felt using the ARS keypads was useful and

especially liked seeing the correct answers and

were excited when their answer was correct.

Lessons Learned

Native Navigators and the Cancer Continuum

Lessons Learned

As Navigator I have been approached while out in

the public with citizens making comments about

how much they are or have learned from the

session and would like to have more.

The most common remark is that they are going to

be more aware of preventative screening and to

make sure that their family members get them

also.

I am so glad that our (MCN) people are becoming

more involved with Cancer and cancer awareness.

29

Lessons Learned

Noel Pingatore

Intertribal Council of

Michigan, Inc.

Lessons Learned

Listen to the Community – focus on Elders

Work with Key Community Partners

(MOA’s)

Protect the Data Reports and Session info

Tailor information to local region, culture,

traditions

Collaborate with other Cancer Programs,

Institutes, and agencies on multiple levels.

Lessons Learned

Reality can screw up great work

1 NPN thought data backed-up onsite and uploaded to online evaluation database and IT reformatted hard drive = data lost

1 NPN laptop stolen when home broken into = data lost

All ITCMI data summaries UNDER-count actual data collected (but lost/unavailable)

32

Lessons Learned

Shalini Kanekar

Rapid City Regional

Hospital and GPTCHB

Northern Plains

Comprehensive Cancer

Control Program

33

Challenges faced in Rapid City and Pine Ridge

Education and knowledge levels varied in both communities

Some medical terminology was

difficult to understand

Length of the modules

Recruitment was slow in the 1st

year for Rapid City and Pine

Ridge, especially for AI men

Lack of internet connectivity

especially on Pine Ridge Karen Red Star and Kim Crawford

Solutions

MOU for both sites (Oglala Lakota College

for Rapid City and Karen Redstar in Pine

Ridge)=

high recruitment

Rapid City used several

local resources such as

Dakota Plains Legal

Services NNACC Family Fun Event, Rapid City

Solutions

The Tobacco Cessation Program at

Great Plains Tribal Chairman’s Health

Board

Such resources = fewer in Pine Ridge

NNACC Family Fun Event, Rapid City

Solutions

Cash incentive worked better than gift card

on Pine Ridge

NNACC Family Fun Event, Rapid City

Lessons Learned

AI communities recognize the growing

prevalence of cancer in their communities

and understand the significance of early

detection.

AI communities have shown interest in

gaining more knowledge on cancer and

related topics, however would prefer

shorter modules

Lessons Learned (cont.)

This project has developed CRR as a local resources who serve their communities

Online evaluation worked well for education session.

However better tracking methods needs to be developed for patient navigation for screening

Patient navigation information can be streamlined

Innovation

At Rapid City: Used a Tribal College as a

partner and local resources to bring in

expertise when needed.

At Pine Ridge the CRR was embedded

within the Indian Health Service Clinic and

had access to Walking Forward Program’s

Cancer Screening Coordinator.

40

Lessons Learned

Linda Burhansstipanov

Native American Cancer

Research Corporation

(NACR)

Lessons Learned – NACR, et al

Online evaluation program made the 1st drafts for annual progress reports feasible to do without bothering partners for data updates

Exception: programs not keeping data uploads up-to-date

All sites needed to track referrals to screening better

Needed copies of data summaries quarterly (raw data files). Previous statistician provided summaries without providing the files.


Scheduled 1 annual face-to-face meeting

for all Partners and Navigators – but

needed 2

There are things

you can do well

with webinar, but

some things need

to be face-to-face


NACR staff collected ARS at FFE in a

park. (Gave everyone keypad and

handout of questions and went through the

questions together).


Need project coordinator >20% effort

Particularly to monitor NPN uploads to

online evaluation program

Monthly connection with all Partners’

Co-I and review Partner’s database

Use same ARS hardware and software

Community participants for multiple series

GREAT partners – we plan to continue our

partnership on future grants

45

Preliminary Findings

Linda U. Krebs, RN,

PhD, AOCN, FAAN

(20 Minutes)

Aim #1. Expand and enhance (a)

Navigator/ community education inservice

trainings and (b) modify the Native

American Community Education Workshops

to include the full continuum of cancer care.

All sites have completed this task

46

Aim #2. Implement and evaluate 24 hours

of Native American Community Education

Workshops to at least 738 unduplicated

Native Americans

All sites have completed this aim

Request for increased enrollment approved

by WIRB spring 2011 due to increased

participant interest (and REPEATS)

Original Target = 735 unduplicated

As of 10/26/2012 = 1,964 unduplicated

47

Aim #3. During years 02 through 04, the Native

American Community Education Workshops will

increase the knowledge and intended behaviors among

the Native American participants by at least 20%.

48

Table 2. Increased Knowledge and Overall Workshop Evaluation NACR ITCMI RCRH GPTCHB MCN Total Avg % of participants that answered pre-session knowledge items correctly

37.5% 44.6% 33.0% 42.5% 43.7% 40.3%

Avg % of participants that answered post-session knowledge items correctly

66.9% 61.5% 65.7% 65.7% 67.2% 65.4%

Change in % of correct responses from pre to post

29.7% 25.3% 32.7% 29.8% 24.6% 28.4%

49

Table 3. Overall Workshop Evaluation NACR ITCMI RCRH GPTCHB MCN Total Avg % of participants that rated the workshop content as "understandable"

95.2% 86.2% 78.1% 88.3% 97.4% 89.0%

Avg % of participants that responded "I agree" about the workshop providing useful information

95.6% 92.9% 76.5% 95.5% 98.1% 91.7%

Avg % of participants that answered "yes" they would recommend the workshop to others

95.7% 93.4% 82.1% 95.2% 95.1% 92.3%

Overall Workshop Evaluation by

Partner’s Sites Staff issues Yr 01;

New NPN needed more face-to-face training; GPTCHB NPN worked with her

Yr 2 Initial WS scores for RCRH NPN were low, but GREAT improvements by early Year 3

Aim #4. During years 02 through 05, Navigators

will provide one-on-one support for Native American

cancer patients and families identified in the course of

the education intervention.

50

Relies on a combination of data uploaded

to “Dissemination” tab, the “Navigation”

tab and the “NNACC” tab within each

site’s online evaluation database

Staff identification and provision of NPN

services for local AI cancer patients:

NACR = 18

ITCMI = 12

RCRH/GPTCHB= 27

MCN = 25

GENDER NACR ITCMI RCRH GPTCHB MCN Total Females 356 159 285 219 356 1375 Males 135 23 202 130 99 589 Total 491 182 487 349 455 1964

Trying to increase percentage of male participants = Average 71% females; 29% males

RCRH (41%) and GPTCHB (37%) have highest inclusion of males

Reminder: all ITCMI data are under-counts

80% AI/ANs NACR ITCMI RCRH GPTCHB MCN Total

Race / Ethnicity AI/ANs 348 121 467 293 407 1636 African American 7 3 3 3 8 24 Pacific Islander 3 2 3 10 1 19 Asian 3 1 1 1 2 7 Non-Hispanic White 44 51 6 20 29 150 Hispanic 80 4 3 13 2 103 Other 7 1 4 8 6 26 491 700 487 349 455 1964


Ages NACR ITCMI RCRH GPTCHB MCN Total 18-21 20 8 37 26 20 112 22-30 70 8 95 50 43 267 31-40 76 15 104 56 48 300 41-50 84 17 118 32 53 304 51-60 143 45 98 45 131 462 61-70 80 40 31 23 137 311 71-80 17 34 1 112 2 166 Over 80 2 15 3 4 20 44 Totals 491 182 487 349 455 1964


Aim #5. Evaluate and compare the process and

outcome measures of the Native American

community cancer education interventions and

the Navigator/Community Educators’ cancer

patient support efforts.

Relies on a combination of data uploaded

to “Dissemination” tab, the “Navigation”

tab and the “NNACC” tab within each

site’s online evaluation database

54

Overall (as of 10-7-09-2012)

Each setting is doing

something well

Each setting needs to improve

some tasks

All need to determine which

tasks are feasible for future

collaborations

55

56


Loretta Denny

Muscogee (Creek)

Nation


24-hour series at 4 different areas within the

tribal boundaries.

Audience Response System:

Our goal was to reach 135 unduplicated

participants total.

Reached: Site 1- 203; Site 2- 71; Site 3-

63; Site 4- 154 = 491

MOA’s and funding were provided to each

community to allow for meal preparations and

staff assistance in monitoring the program


A series of 12 sessions were held at 4 different areas within the tribal boundaries. Each series includes several sessions on each phase of the Cancer Continuum

Use of the Audience Response System:

Our goal was to reach 135 unduplicated participants total.

Reached: Site 1- 203; Site 2- 71; Site 3- 63; Site 4- 154 = 491

MOA’s and funding were provided to each community to allow for meal preparations and staff assistance in monitoring the program


Site 1 – Central Muscogee Creek Nation

More than 731 individuals took part in at

least 1 workshop.


56% = 40+ years old

Average pre-workshop correct = 40.7%

Average post-workshop knowledge =66.5%.

Increase in knowledge of 25.8%.


434+ individuals took

part 1> workshop

89.8% = 40+ years old

Site 2 – Southwestern Muscogee Creek

Nation


Average pre-workshop correct knowledge =

44.8%

Average post-

workshop

knowledge = 69.3%

Increase in

knowledge of

24.6%


Site 3 – Southeastern Muscogee Creek

Nation

>372 took part in at least 1 workshop

92% = 40+ years old

Average pre-workshop

knowledge = 40.5%

Average post-workshop

knowledge = 66.8%

Increase =27.7% Bear – Coyote Interactive Activity


Site 4 – Northern Muscogee Creek Nation

707+ took part in at least 1 workshop

82% = 40+ years old

Average pre-workshop

knowledge = 42%

Average post-workshop

knowledge = 66%

Increase = 24%

Interactive Activity: Healthy Eating

65


Noel Pingatore

Intertribal Council of

Michigan, Inc.

Did you take any of the following actions as

a result of what you learned or heard in

one of the classes:

Of those who completed the survey:

44% Shared info with a friend or family

member

44% made changes in my lifestyle

22% Urged others to get Cancer

Screening or other health related

services

Inter-Tribal Council of Michigan

Shared Results with NICOA

Local Tribal Elder Program Coordinator referred us to NICOA’s annual meeting

Prepared and presented the project (Noel, Amanda, Mark)

We were overwhelmed with the response from elders across the country – all want to know how they can bring this program to their community.

Sample of Results

Prostate- Pre: 50.7% Post :92.7%

Increase

Cervix- Pre: 69.1% Post: 84.0%

Increase

Breast- Pre: 36.8% Post: 76.9%

Increase

Colon – Pre 54.7% Post: 84.6%

Increase 29.9%

70


Shalini Kanekar

Rapid City Regional

Hospital and GPTCHB

Northern Plains

Comprehensive Cancer

Control Program

Frequency / Descriptive Summary data from Online Evaluation Databases

RCRH GPTCHB

Total

Number of Family Fun Events (baseline and 3-month Delayed Evaluation) 0

Number of 24-hour Education Workshop Series Completed 0

Number of participants (includes duplicates) 0

AIANs 851 699 1550

African American 6 7 13

Pacific Islander 5 24 29

Asian & South Asian 1 3 3

Non-Hispanic White 11 48 59

Hispanic 6 32 38

Other / DWTA 8 19 27

AIANs 0

African American 0

Pacific Islander 0

Asian 0

Non-Hispanic White 0

Hispanic 0

Other 0

Duplicated Females 484 592 1076

Duplicated Males 401 234 635

Unduplicated Females 285 285

Unduplicated Males 202 202

18-21 (<21) 62 89 151

22-30 158 170 328

31-40 173 189 892

41-50 197 108 890

51-60 163 153 1583

61-70 52 77 1221

71-80 2 377 572

Over 80 5 12 185

Knowledge Scores

Average percent of participants that answered pre-session knowledge items correctly 33.0% 42.5% 40.3%

Average percent of participants that answered post-session knowledge items correctly 65.7% 65.7% 65.4%

Difference between the average percentage correct for the pre- and post-session knowledge

32.7% 29.8% 28.4%

Workshop Evaluations

72


Linda Burhansstipanov

Native American Cancer

Research Corporation

(NACR)

Excerpt from Online Evaluation: Navigation Report from NACR Database (18 patients during NNACC)

75

Scientific Advances and

Publications

(2 minutes)

6 Peer-Reviewed Publications that focus on

or include excerpt specific to NNACC Eschiti, Valerie, Lauderdale, Jana, Burhansstipanov, Linda,

Weryackwe, Leslie M, Sanford, Stacey C, Flores, Yvonne. Tailoring

Cancer-related Educational Modules and Goals for Comanche

Nation. Journal of Transcultural Nursing, Manuscript ID:JTN-12-

054.R1; in press.

Burhansstipanov, Linda, Clark, Richard E, Watanabe-Galloway,

Shinobu, Petereit, Daniel G. Valerie Eschiti, Linda U. Krebs and

Noel L. Pingatore, Online evaluation: Benefits and Limitations.

Journal of Cancer Education. Volume 22 / 2007 - Volume 27 / 2012.

DOI: 10.1007/s13187-012-0320-9

Burhansstipanov, Linda, Krebs, Linda U., Watanabe-Galloway,

Shinobu, Petereit, Daniel G., Pingatore, Noel L. and Eschiti, Valerie.

Preliminary Lessons Learned from the “Native Navigators and

the Cancer Continuum” (NNACC) Journal Of Cancer Education.

Volume 22/2012. February 2012 DOI: 10.1007/s13187-012-0316-5

6 Peer-Reviewed NNACC Publications (cont.)

Braun, Kathryn L., Kagawa-Singer, Marjorie, Holden, Alan E.C.,

Burhansstipanov, Linda, Tran, Jacqueline H., Seals, Brenda F.,

Corbie-Smith, Giselle, Tsark, JoAnne U., Harjo, Lisa, Foo, Mary

Anne, and Ramirez, Amelie G. Cancer Patient navigator tasks

across the Cancer Care Continuum. Journal of Health Care for

the Poor and Underserved 23 (2012): 398–413.

Eschiti, Valerie, Burhansstipanov, Linda, and Watanabe-Galloway,

Shinobu. Native Cancer Navigation: The State of the Science.

Clinical Journal of Oncology Nursing Volume 16, Number 1pp 73-82,

89 DOi.1188/12.CJON.73-82.

Tracy A. Battaglia, Tracy A.; Burhansstipanov, Linda; Murrell,

Samantha S.; Dwyer, Andrea J. and Caron, Sarah E.; Assessing

the Impact of Patient Navigation: Prevention and Early

Detection Metrics. Cancer, August 1, 2011; 3553-3564. DOI:

10.1002/cncr.26267

Planned Articles (some in process)

Seminars in Oncology Nursing on

"Navigation Service as an Intervention to

Eliminate Disparities in Cancer Care

Outcomes in Underserved Communities."

Planned Articles (some in process)

3 Project Briefs for

Healthcare providers/Academicians;

Policymakers/Tribal Leaders;

Community

Possible Peer Reviewed Articles:

AI Technology Survey

Who should be the authors from each

site?

Needs to be submitted prior to

September NNACC meeting

NACES Northern and Southern Plains

Authors: Linda B, Mark Dignan, Rick

Clark, Linda K, Tinka, Loretta

80

Possible Peer Reviewed Articles:

NNACC Overall Study Findings

Administrative Team (Noel, Shinobu,

Debra, Lisa H, Linda B, Linda K, Mark

Dignan, Rick Clark)

Needs to be completed by January 31,

2013

81

Planned Articles (outlined 7/11/12)

Native Patient Navigators provide lessons

learned to Navigators working in other AI

cancer programs

Native Patient Navigators provide rationale

for why CULTURAL PN are needed

Creating Successful partnerships

Available on NACR’s website

http://natamcancer.org/materials.html

Sci_Adv_1_FactSheets (July 2010)

Sci_Adv_2_CN_NNACC (December 2010)

Sci_Adv_3_OnlineEval (December 2010)

Sci_Adv_4_Sharefindings (December 2010)

Sci_Adv_5_MOA-Os (August 2011)

Sci_Adv_6_Nav_Training (August 2011)

Sci_Adv_7_MCN-Issues (December 2011)

No feedback from NIH, LB quit submitting them

83

Summary / Key

Points

84

85

Summary: IRB

Regional / Tribal IRBs required 4-9 months

in spite of prior tribal approvals

WIRB includes ITCMI, NACR and MCN

Future applications will require each to

have its own FWA (currently under NACR)

WIRB approval of over-sample

86

Summary: ARS

ARS, once learned, is working well for FFE and workshop evaluations

Because of higher than anticipated participation, NACR needed to loan ARS keypads to partners

Most partners have or plan to purchase more keypads

New software easily tracks “duplicate” participants

87

Summary: In-Service NPN Trainings

More than 125 hours of initial NPN training

Although webinars work well, for some

trainings no substitution for face-to-face

trainings (and observed practical exercises)

Topics for refresher sessions or new topics

(stomach, pancreatic) are identified by NPNs

or members of the administrative team

Videotaping helped when staff turn-over, but

not replacement for face-to-face practical

exercises

88

Summary: Partnerships

Community-based Participatory Research

Design among NACR, ITCMI, RCRH

(GPTCHB), MCN

Each Partner creates MoA-O with other

local AI organizations to coordinate,

implement and evaluate FFE and WS

interventions

89

Summary: NNACC Intervention Evidence-based

More popular than anticipated and very well

accepted by all of the communities

NPNs doing good job as per workshop evaluation

findings; exceeded study goal of >20% by 9%

Each site = duplicate participants from previous

workshop series (PIs had to omit from analysis)

NNACC goal was 738 unduplicated participants,

but with WIRB approval = >2,000 unduplicated AI

community members in intervention.

90

Summary: Online Evaluation

Very challenging learning curve for ALL

When get behind, very tedious to upload

data to all 3 tabs

Effectively tailors reports – but only if NPN

enters the data

Greatly assisted with generating

Series-specific summaries for

dissemination to communities

Annual PHS2590 Progress Reports

91

Summary: Dissemination

Each Partner works with local MOAs to

share study findings with local community

during post FFE

Scientific Advances posted on NACR

Website

6 peer reviewed articles as of 9-2012

4 articles outlined for peer reviewed

publications

92 92

Thank you for

inviting OUR TEAM

and allowing US to

share NNACC with

you!

Download - #A1-13 Native Navigators: Engaging Communities for Cancer ...natamcancer.org/handouts/A1-13_NNACC_NIMHD_PDF-slides.pdf · #A1-13 Native Navigators: Engaging Communities for Cancer

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