Lessons Learned from Tampa Bay Community Cancer Network's (TBCCN) Community Partner Participatory Needs Assessment for Impacting Cancer Health

Disparities

American Cancer Society Conference

New Orleans, LA

April, 19, 2007

Clement K. Gwede, Ph.D., MPH, RN

Interdisciplinary Oncology

H. Lee Moffitt Cancer Center

University of South Florida

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Community Partnerships for Cancer Disparities Research & Outreach

• NCI Center to Reduce Cancer Health Disparities http://crchd.nci.nih.gov/

– Community Network Programs– 25 Nationwide (local, regional, national)– Multiethnic, multilingual research, outreach

and education to positively impact cancer disparities

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Tampa Bay Community Cancer Network (TBCCN)

at H. Lee Moffitt Cancer Center & Research Institute

“Building Community Partnerships to Reduce Cancer Health Disparities”

Funding: National Cancer Institute

(Grant #: U01 CA114627-01), 2005-2010

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Overall Goal

• To achieve a robust and sustainable infrastructure based on a community network composed of a recognized NCI-designated comprehensive cancer center, community partners, academic collaboration, and urban and rural health care providers. The network is grounded in interdisciplinary and community-collaborative approaches, aims to contribute to effective care across the spectrum of cancer control and ultimately to the reduction of cancer health care disparities.

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TBCCN Geographic Areas/Populations

A local CNP to reduce cancer health disparities in multi-ethnic medically underserved populations

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TBCCN Partners

• Well established, community-based organizations that:– Provide services to underserved multiethnic

communities– Seek to improve community outcomes

• Clinical/health

• Social/literacy

• Other grassroots issues

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Community Partners Assessment

• Assess partners’ expectations and contributions to TBCCN

• Determine perceived community needs and priorities

• Determine partners’ cancer education and training needs

• Identify community/partners resources and assets (for possible GIS mapping)

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Data Collection Procedures

• IRB approval: – Waiver of written informed consent form

• Participatory-collaborative approach to instrument (questionnaire) development and survey procedures

• Pretested and revised questionnaire

• Signed memorandum of understanding (MOU) / TBCCN partnership

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Data Collection Procedures (Cont’d)

• Mailed detailed study participation letter & questionnaire

• Prescheduled telephone interview– Secondary data sources

• Average interview length: 45-60 minutes• 1 interviewer and 1-2 recorders

– Responses recorded directly on questionnaire – Interview audiotaped; debriefing.

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Questionnaire

• Mixed Quantitative and Qualitative (open-ended)

• Organizational information and expectations

• Characteristics of client population

• Identification of assets/strengths

• Perceived priority concerns

• Perceived education/training needs

• Relevant/Important documents

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Results

• 19 of 20 partners completed survey– Key informant approach

• Emergent themes (qualitative)

• Descriptive statistics (quantitative)

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Services Provided by Partners (N=19)

Service Type N (%)

Main Focus

N (%)

Health Education 16 (84) 5 (26)

Advocacy 13 (68) 2 (11)

Cancer Related Services 12 (63) 2 (11)

Social Services 8 (42) - -

Primary Health Care 8 (42) 6 (32)

Other Services 17 (89) 4 (21)

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Partners’ Expectations from TBCCN

• Access to Resources– Cancer screenings and follow up care for clients– Education, information, and awareness-raising

activities

• To learn more about TBCCN member partners and resources/services available– Partner and resource/services directory

• Organizational assistance and capacity building– Cancer education and training to facilitate their

organizational endeavors

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Partners’ Expected Benefits from TBCCN

• Material Benefits– Improved community access

to clinical care, preventive screening, follow-up care, tapping resources of all partners

– Desire to increase education/awareness in communities they serve

– Getting technical assistance for organizational development, grant writing, supportive help with their activities

– Networking with other partners and volunteers

• Ideational Benefits– Platform for

Knowledge/idea exchange among partners

• “…Grassroots organizations need education… Fountain for us.”

– A sense of group solidarity/strength in numbers as partners of the TBCCN

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Partners’ Potential Contributions to TBCCN

• Cultural brokering– Knowledge of community– Advocacy (linguistic needs, cultural perspectives, rallying

community support for events)

• Services they can bring to underserved communities – Health care related (non-cancer) and non-health care

services

• Educational and continuing education opportunities– Adult-education and literacy– Some disease specific expertise (e.g., breast, prostate

cancer survivorship)– National reputation and recognition

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Perceived Top General Community Concerns/Needs (N=19)

42

2621

10

0

10

20

30

40

50

60

70

80

90

100

Access tocare/services

Affordable HealthInsurance

Public Awareness ofServs

Other

Per

cen

t

18

Perceived Top Community Concerns/Needs Regarding Cancer (N=19)

32

53

115

0

10

20

30

40

50

60

70

80

90

100

Access to Care/Servs Cancer SpecificEducation

Affordable HealthInsurance

Translators

Per

cen

t

19

Perceived Top Community Cancer Information Needs (N=19)

42

26

1610

5

0

10

20

30

40

50

60

70

80

90

100

Breast CancerAw areness

Aw areness CancerInformat/Servs

Literacy/CulturallyRelevant

Other Cancers Other

Percent

20

Interest in Cancer Information Satellite Stations (N=19)

11

21

68

0

10

20

30

40

50

60

70

80

90

100

Not interested Somewhat Interested Very Interested

Perc

en

t

21

Partners' Education/Training Needs (N=19)

74 74 74

6358 58 58

53

0

10

20

30

40

50

60

70

80

90

100

DevelopingLow

LiteracyMaterials

FindingGrant

Funding

CommunityCancer

Screenings

GrantWriting

Workshop

Cancer 101 NewCancer

Treatments

ClinicalTrials

SmokingCessation

Percent

22

Ranking/Prioritization of Education/Training Needs (N=19)

0

1

2

3

4

5

6

7

8

9

DevelopingLow Literacy

Materials

Finding GrantFunding

CommunityCancer

Screenings

Grant WritingWorkshop

Cancer 101 New CancerTreatments

Clinical Trials SmokingCessation

Nu

mb

er

of

resp

on

den

ts r

an

kin

g ite

m

Priority #1

Priority #1 or #2

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Making Sense!

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Summary of Findings

• Partners expressed distinct, consistent expectations, benefits from and contributions to TBCCN– Partner directory – Resource/referral network

• The top (#1 priority) area of concern is access to services for uninsured individuals– Referral networks – Navigation services

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Summary of Findings (Cont’d)

• There is need to increase community capacity and education – Top 3 cancer education workshops for partners:

• How to develop low literacy materials

• Identifying sources of grant funding,

• How to refer community members for cancer screenings (referral/navigation)

– Cancer information satellite stations for clients/community members

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Lessons Learned

• Memoranda of Understanding (MOU)• IRB processes

– CBPR vs. traditional investigator initiated research approach– Consent: Are community partners voluntary research

participants? MOU mandates participation …

• Organization vs. Research goals– Making it fit

• CBPR inherently challenging even under the best circumstances– “It” will take longer than anticipated– Plan for flexibility and reinvention – Balancing needs of diverse multi-ethnic communities

• Additional exploratory in-depth interviews may be warranted

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Implications & Sustainability

• Results of survey discussed with partners (ongoing)• Mutual, collective decisions for CBPR projects for

impacting cancer disparities in diverse communities– Cancer Information Stations

– Community Partner Profile and Service Directory

– CBPR pilot projects to explore specific issues from assessment

• Strong desire to ensure community benefit – improve access to care/services for multiethnic, medically underserved communities

• Dynamic Partnering: sub-partnerships and new collaborations (among partners) emerged

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Most Importantly

Acknowledgements

Cathy D. Meade, Ph.D., RN (P.I.)

Clement K. Gwede, Ph.D., MPH, RN

Nicole D. Dossett, BS

Janelle M. Menard, MPH, MA

Dinorah Martinez, MPH, MA

Ji-Hyun Lee, Ph.D.

Jenny Blanco, BS

Susan T. Vadaparampil, Ph.D., MPH

and TBCCN Partners

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Questions?