View Presentation - Centro Comprensivo de Cáncer de la

Strategic Partnerships
between Community,
Academia, and
Industry to Reduce
Cancer Health
Disparities: The Puerto
Rico Cancer Coalition
Elba C. Díaz-Toro, DMD, MSD, MPH
Associate Director of Education/
Investigator of Cancer Control and
Population Sciences & Dental
Oncologist
UPR Comprehensive Cancer Center
Professor & Prostodontist Restorative
Sciences Department
School of Dental Medicine
Community-Based Participatory
Research (CBPR) definition by the
Kellogg Foundation
,
is "collaborative approach that equitably
involves all partners in the research
process…with the aim of combining knowledge
and action for social change to improve
community health and eliminate health
disparities.‖
 Not a set of methods, orientation which
fundamentally changes the relationship
between researchers and researched.
Research




Is to create knowledge that can be used to improve
health and health care, and reduce inequities for
individuals and communities
Community-based participatory research (CBPR),
provides principles and processes for obtaining
community input
Investigators are increasingly actively involving
individuals and institutions who would be affected by
the research
Increasingly used in traditional medical research
settings.
Israel B, Eng E, Schulz A, Parker E, eds. Methods in Community-Based Participatory
Research for Health. San Francisco, Calif:
Jossey-Bass; 2005.
Community-Based Participatory
Research
 Designed
to partner community members with
academic researchers to jointly define issues
needing study.
 Community members participate in every
aspect of designing and implementing research
with the expectation that this process will
enhance the translation of research into
practice in communities.
 The partners then develop, conduct, and
disseminate research addressing those issues
Minkler M, Wallerstein N, eds. Community- Based Participatory Research for
Health. San Francisco, Calif: Jossey-Bass; 2003.
Eight key principles of CBPR




Recognizes
community as a unit
of identity
Builds on strengths
and resources within
the community
Facilitates
collaborative
partnerships in all
phases of the
research
Integrates
knowledge and
action for mutual
benefit of all partners




Promotes a colearning and
empowering process
that attends to social
inequalities
Involves a cyclical
and iterative process
Addresses health
from both positive
and ecological
perspectives
Disseminates findings
and knowledge
gained to all partners
Critical elements of CBPR are
 (1)
recognizing that both the academy and the
community have important expertise,
 (2)
having community members participate in every
aspect of the research, from defining the health
concern and designing the research question to
interpreting and disseminating the results,
 (3)
having the community and the academy share
knowledge, skills, resources, and power, and
 (4)
using the results of the research to inform and
direct change.
CBPR can contribute to decreasing
health inequities among disempowered
communities in at least three ways:
1.
through building capacity in underserved
populations,
2.
through focusing attention on social justice, and
3.
through sharing power and resources
Horowitz CR, Arniella A, James S, Bickell NA. Using community-based participatory research to reduce health
disparities in East and Central Harlem. Mt Sinai J Med. 2004;71: 368–374.
Wallerstein NB, Duran B. Using communitybased participatory research to address health disparities. Health
Promot Pract. 2006;7:312– 323.
Health Inequities


Researchers, funders, and policy makers increasingly
have recognized the extent and severity of health
inequities.
Acting within the guidelines of CBPR could reduce
health inequities in a number of ways; one is to highlight
issues that were not previously apparent.
BUT

Traditional approaches to reducing these inequities
have had limited success.
National Healthcare Disparities Report. Rockville, Md: Agency for Healthcare Research and Quality; 2003.
Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.
Washington DC: National Academy Press; 2003.
Accordingly, the underlying CBPR
principle of partnership—
 Those
affected by inequities are integral to
better understanding the nature of,
consequences of, and solutions to inequities.
 Community-based research occurs on a
spectrum from:
 community-placed
research, where community
members serve as research subjects only,
 to fully participatory research, where community
members have an opportunity to contribute to the
extent of their ability and availability in every step of
the process.
CBPR presents substantial challenges
 Demands
transdisciplinary collaboration, and
researchers acceptance of research subjects as
research partners,
 Researchers desires for advocacy, and
acceptance of power sharing in decision making
throughout the research process.
 Successful community collaborations require time
for building and maintaining relationships through a
lengthy and unpredictable process of planning,
development, and refinement.
 doing CBPR requires understanding local strengths
and needs, and can work only if it is specifically
adapted to fit within the local context.
Other Challenges
 There
are limited medical faculty with experience
in CBPR,
 The
existing academic framework, especially with
regard to promotion, offers few incentives for this
approach to research
 The
existing traditional funding framework,
especially with regard to available time and
money, offer no incentive for this approach
Sustainability
 Critical
is having committed academic faculty and
community partners


Academic medical centers may not be ready to
support academic careers
Many leaders of academic medicine have been
successful in using traditional research models
 transparency
from the beginning about planned
deliverables and roles.
CBPR decrease health inequities
among disempowered individuals
through
 building
skills in using research to
advocate for their needs,
 having a collaborator who has credibility
with policy makers, and
 increasing the power and confidence of
individuals to secure resources
CBPR principles gives
physicians and researchers
 skills
in relationship building, communication,
collaboration, and negotiation that can be
applied effectively in more traditional health
services sites.
 better trained to carry out a quality improvement
project in the hospital (i.e., where medical staff
and administrators and patients are
thecommunity),
 to listen for places where the community can get
involved
 and to seek knowledge wherever and from
whomever has it.
Summary
CBPR
principles and practices may
enhance any effort to engage and
mobilize stakeholders and promote
social and policy changes,
environmental and system changes,
whether in health systems, rural sites,
or urban communities.
Health Care System
•
The Puerto Rico Health Insurance Administration
(PRHIA) is the public corporation charged with
implementing the Medicaid managed care
program. (Reform)
•
Prior to the reform, the Medicaid populationthrough public primary care centers located in
each municipality and public hospitals.
•
After the reform, these services are now mostly
provided through private healthcare providers.
Health Care System
•
Currently, Puerto Rico has an estimated
population of 3.7 million people.
•
Around 40% of the population is insured by
the Medicaid program (Reforma),
•
Around 51% to 53% are privately insured
including those with under Medicare, and
•
There are still between 7% to 9% of the
population uninsured.
Health Disparities in PR
 Yet,
these diagnostic and therapeutic
breakthroughs and unprecedented
healthcare spending have not eliminated
health disparities in PR for the majority of
health conditions, even among
populations, that in theory, have equal
access to care.
Increasing the
Utilization of the
Puerto Rico
Quitline through
Outreach
Pilot Project
The success of the Outreach Pilot
Project included accomplishments as:
 Development
of extensive Community Network (>60
organizations) and collaborations with key PR
government health agencies and leaders
 Organization of 7 Tobacco Summits
 Held dissemination activities in PR (education campaign),
and developed research projects (ex. Cancer Risk Reduction
through Combined Treatment for Tobacco and Alcohol Use)
 Training
health care providers on evidence-based
practices (+700 of a total of 16,000)
 Played major role in contributing to policy changes
that drive to the passage of a strong smoke-free law
(Law 66) and more others
 Activities led to increased number of calls to PRQ,
quality of services and research infrastructure
U54 UPRCCC/MDACC Partnership for Excellence in Cancer Research
Puerto Rico
Community
Cancer Control
Outreach
Program
(CCCOP)
Full Project
PR Community Outreach program
definition in this application is:

Research programs to increase the use of and
access to beneficial medical procedures, such as:
primary prevention measures e.g. smoking cessation
and cancer vaccines
 early detection procedures, such as mammography,
PAP smear, colorectal cancer screening or prostate
specific antigen testing.

U54 UPRCCC/MDACC Partnership for Excellence in Cancer Research
CCCOP Goal
 To
modify and sustain health behavior
through the development of
comprehensive, sustainable partnerships
for cancer control outreach, education,
research, and training in Puerto Rico.
 Specifically, to:
 decrease
tobacco use,
 increase vaccination against HPV, and
 increase breast and cervical cancer
screening
The CCCOP will build upon the successes of the
existing Outreach Pilot by working with community
organizations and health care systems/professionals
to:
1.
2.
Maintain, strengthen, and further develop a
cancer control outreach network that will
build upon existing relationships and develop
new collaborations.
Conduct a community assessment of needs
and resources for breast and cervical cancer
prevention and screening and tobacco
control.
Cont. CCCOP AIMS
3.
4.
5.
Develop capacity among health care providers
and community organizations to implement and
sustain culturally competent cancer control
outreach and education programs to address
disparities in breast and cervical cancers and
tobacco control.
Provide active mentoring and career development
opportunities to CCCOP researchers and
community partners to build capacity in cancer
control and community-based participatory
research.
Evaluate the impact of the CCCOP on increasing
breast and cervical cancer screening, increasing
HPV vaccination, and reducing tobacco use in P.R.
CCCOP Approach
We
uses capacity building and communitybased participatory research methods to
enable health-care providers and
community organizations to implement
evidence-based cancer-control programs.
The focus is to modify and sustain the
following health behaviors: breast and
cervical cancer screening, HPV vaccination,
and tobacco cessation.
Strengths of the CCCOP
 The
program has established relationships with
government agencies.

The approach is to engage existing organizations (health
care, government, educational, community-based) in
coordinated and collaborative efforts to promote and
deliver evidence-based cancer control interventions in their
local communities and island-wide.
 There
is a compelling rationale for the program and
benefits will be transferred to the population of PR.
 A very successful Outreach Pilot Project activities

The guiding principle for selecting all activities is that they
reflect evidence-based practices that have been shown to
affect behavior.
Our future plans for the community outreach
programs are not limited to
research programs to increase the use of
and access to beneficial medical
procedures but also, we want to develop
research programs to increase the
participation and access to clinical trials and
other applications that emerges from the
tacit knowledge, needs and capacity
residing within communities
Summary
 We
consider that outreach programs are a
broad public health perspective approach for
cancer control, not only because is
comprehensive and science based enough to
succeed, but also, it focuses on health
promotion and disease prevention by
partnershipdevelopments, which are not only
more cost effective but also more humane.
 With the outreach programs we want to
develop leaders who care enough, know
enough, will do enough, and are persistent
enough to eliminate health disparities as cancer
in PR.
The Importance of
Partnerships
 No
ONE organization can do the work
that needs to be done.
 We
can be more powerful working
together than working alone.
 We
can streamline our messages and at
times speak with “one voice‟”.
 Our
combined efforts can allow for
sharing resources and maximizing our
infrastructure.
The Importance of
Partnerships
 Working
together we strengthen each
other‟s weaknesses.
 Often,
people believe the partnership
learning process has been as important as
the plan.
 Good
relationships in partnerships are just the
same as good relationships in „real life‟.
The Three Dimensions of Success
Results
Results
Process
Relationships
Process
Relationships
Relationship Challenges
 Time
Consuming
 Turf
Issues
 Old
Baggage
 Not
everyone is a group player
 Separate
Agendas
PUERTO RICO CANCER CONTROL
COALICION
Comprehensive Cancer Control
Comprehensive Cancer Control is a
collaborative process through which a
community pools resources to reduce the
burden of cancer by working to achieve:
 Risk
Reduction
 Early Detection
 Improved Treatment
 Enhanced Survivorship
Principles of Comprehensive Cancer
Control
 Data-based:
Research-based information and tacit
knowledge, based on real world experience, are
integrated for cancer control planning and
implementation
 Comprehensive:
The full scope of cancer care is
addressed, ranging from primary prevention to early
detection and treatment to survivorship and end-oflife issues
 Collaborative:
Many stakeholders are engaged in
cancer prevention and control, including not only the
medical and public health communities, but also
voluntary agencies, insurers, businesses, survivors,
government, academia, and advocates.
Principles of CCancer Control
 Integrated:
All cancer-related programs and activities
are coordinated, thereby creating integrated
activities and fostering leadership
 Trans-Disciplinary:

Epidemiology

Administration

Basic and applied research

Evaluation

Health education/Behavioral Science

Program development

Public policy

Surveillance

Clinical services

Health communications
The Benefits of Comprehensive
Cancer Control
 Reduces
duplication
 Maximizes
resources
 Enables
changes in systems, enviroment and policies
 Enables
multi-level, simultaneous interventions
 Maximizes
impact on reducing incidence and mortality, and
improving quality of life
CANCER CONTROL CONTINUUM
Cancer Continuum
Prevention
Early
Detection
Diagnosis Treatment/ Survivorship/
Incidence
QOL
Mortality
Puerto Rico Coalition Members Geographic Distribution
Barceloneta
Aguadilla
Florida
Moca
San
Sebastián
Añasco
Ciales
Lares
Morovis
Gurabo
Barranquitas
Orocovis
Guayanilla
Lajas
Aibonito
Coamo
Ceiba
Caguas
Cidra
Villalba
San
Germán
Trujillo
Alto
Corozal
Jayuya
Adjuntas
Maricao
Loíza
Toa
Alta
Utuado
Hormigueros Mayaguez
Cabo
Rojo
Toa
Baja
Manatí
Arecibo
Aguada
Cataño
Guaynabo
Quebradillas
San
Lorenzo
Naguabo
Cayey
Culebra
Yabucoa
Ponce
Juana Díaz
Guánica
Salinas
Santa
Isabel
Academia
University of Puerto Rico (Medical Sciences Campus, Rio Piedras Campus and Cayey Campus)
Ponce School of Medicine
Professional Organizations
Puerto Rico Oncology Nurses Association
Government Agencies
Puerto Rico Department of Health
Senate of the Puerto Rico - Commission of Health
Patient Advocate Office
Non-profit organization
American Cancer Society PR Chapter (Arecibo, San Juan, Caguas, Ponce, Mayaguez)
Puerto Rican League Against Cancer
Religious Organization
Baptist Church
Guayama
Vieques
Community-based organizations
Association of ostomized
Program “Yo Puedo”
Private Organization
IR Consultant Group
Oncologic Hospital Isaac Gonzalez Martinez
Federal Agencies
Federal Food and Drug Administration
Cancer Information Services of NCI
Pharmaceutical Industry
ConvaTec (A Bristol Myers Squibb Company)
Sanofi-Aventis
AstraZeneca
Merck Sharp & Dohme
Puerto Rico Cancer Control Coalition
Organizational Chart
Puerto Rico Cancer Control
Coalition
Puerto Rico Cancer
Control Program
Board of Directors
Membership
Committee
PSE
Communications
(Website,
Newsletter)
Standing
Committees
Data/Evaluation
Ad-hoc Committees
Resources
Bylaws
Implementation/
Advisory
Committees
Access/Barriers
Prevention
Early Detection
Diagnosis and
Treatment
Survivorship/
Rehablitation
Research
Puerto Rico Cancer Control Coalition
 Group
of cancer stakeholders (entities and
individuals), representative of the Island population
 Responsible
for assessing the cancer status in Puerto
Rico, identifying priorities, establish goals to reduce
cancer morbidity and mortality, and identifying
evidence-based strategies to reach those goals
 Stakeholders






include:
Public health programs
Government agencies
Professional associations and organizations
Academic and medical institutions
Business & industry
Non-profit and community-based organizations
Selection of Priorities
 Coalition
members’ interest & expertise
 Burden of cancer (type) or risk factors
 Availability of adequate data
 Accurate
 Reliable
 Measure
 Availability
over time
of evidence-based strategies
 Potential for meaningful impact
 Feasibility of implementing clinical- or populationbased interventions
Work Groups
Nutrition and Physical Activity
HPV and Cervical Cancer
Breast Cancer
Colorectal Cancer
Survivorship
Recap Coalition
Head and Neck Cancer
2011
Medical Convention
February 2011 Coalition Booth
Convention:
•Dentist
• General
Medicine
Congress
Coalición de
Cáncer
colorectal
Puerto Rico
―Do not follow where the path may lead… go
instead where there is no path and leave a
trail.‖
-Anonymous
PREGUNTAS ?
 Go
to people, live with them, love them,
learn from them. Start with what they
know, build with what they have, and work
with the best leaders, so when the work is
done, people can say, ―We did this
ourselves‖
Lao Tsu, in 700 BC
“ Never doubt that a small, thoughtful group of
people can change the world.
Indeed, it’s the only thing that ever has.”
Margaret Mead, anthropologist, 1901-1978
We are cought in an inescapable network
of mutuality, tied in a single garment of
destiny. Whatever affects one directly,
affects all indirectly.
Martin Luther King, Jr.
1929-1968
Thank You
Head and
Neck
Cancer in
Puerto Rico
Background





Head and neck Cancer is the fourth most
common cancer in the Puerto Rican population
Most Head and neck cancers originate in the cells
of the Mouth, nose and throat
In Puerto Rico, 400 cases are diagnosed annually
There’s been increased public awareness
because recently, multiple public figures have
been diagnosed
 Dagmar, Marlene Gual & Funky Joe
Trainer Francisco Rosa passed away in 2010.
Objectives
 Educate
the public to identify symptoms and
get tested
 Continue
to strengthen alliance with physician
organizations
Key Message
 Become
aware of symptoms and seek
medical advice
 Coalition
sponsored detection clinics
throughout the Island
2011 Coalition
Puerto Rico Society of Oral
& Maxiollo- Facial
Surgeouns (PRSOMS)
Asociación de
Radio-Oncólogos de PR
Asociación de HemaOncólogos de PR
de Puerto Rico
Launching Efforts
 Media

Event to launch
March 30th, 2011- Rest El Zipperle
 Motion
State
of recognition from the Department of

Proclamation of April

Month of Head & Neck Cancer
Coalition speakers:







ENT Society
Radio-Onco Association
Dentists Association
Centro Comprensivo del Cancer
Patients Testimonial
Sistema Franco
Press Conference
March 30, 2011
Awareness Tactics

Informational brochure for MD offices


Condition Awareness Tactics
Awareness
Symptoms
Front
Back
Brochure Stand
Awareness Tactics
 Radio
and TV
Educational Capsules



WAPA
WKAQ
Noti UNO
Reporte Médico Channel
40
Media Tactics
 Educational

To provide unbranded awareness message
from the Coalition
 Media



partnership with WAPA
Tour in Radio & TV stations
Coalition representative and testimonial
TV: Día a Día, Tu Mañana
Radio: El Circo, Gozando en la Mañana, En
Ruta, El Relajo de la X
WAPA
Salsoul
Día a Día- Channel 2
Tu Mañana- Channel
11
Facebook Efforts
Social Media
 Social

Facebook fan page with content tabs




Media
Symptoms
Risk Factors
Continuous wall posts to generate awareness
Social ads all month long

―Click here to know if you’re at risk‖
Teaser Tab en
Fan Page
Fan Page: Wall Posts
Additional Events
Primer Foro de Planificación
Estratégica para el Control de Cáncer
de Orofaringe
 Date:
April 13, 2011
 Place: Anfiteatro CCCUPR
 Objective:

Discuss basic information about oral cancer, as well
as strategies for its prevention and detection in Puerto
Rico.
Print Ad
Public
activity
calendar
Half page
FC print ad
El Nuevo Día
Miércoles, 6 de abril
El Nuevo Día
Miércoles, 13 de abril
El Nuevo Día
18 de abril de 2011
Head and Neck Workshop
April 9, 2011
Bayamón
Patients seen:
56 patients
 Referred to a doctor:
31 patients
 Annual exam recommendation:
25 patients
 Some symptoms:
Biopsy, throat nodules, etc.

Caguas
April 16, 2011
Caguas
Patients seen:
104 patients
 Referred to a doctor:
66 patients
 Annual exam recommendation
38 patients
 Some symptoms:
Biopsy, throat nodules, prosthesis and others.

Mayagüez Head and Neck Workshop
April 30, 2011
Mayagüez
Patients seen:
91 patients
 Referred to a doctor:
59 patients
 Annual exam recommendations:
32 patients
 Some symptoms:
Biopsy, throat nodules, neck mass and others.

ROI
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728 x 90
$1,150.00
ROI
Media
Date
Size
Price
El Nuevo Día
11 de abril de 2011
1/6 página full color
$1,293.33
Primera Hora
31 de marzo de 2011
Center Spread
$15,000.00
El Nuevo Día
17 de abril de 2011
½ página
$4,120.00
El Vocero
24 de abril de 2011
$62,720.00
Regional
8 de abril de 2011
Suplemento 8
páginas a color
1/6 página
Visión
7-13 de abril de 2011 ½ página
$1,131.00
La Semana
7 de abril de 2011
$4,524.00
Full page
$754.00
ROI
Media
Date
Size
Price
El Nuevo Día
17 de abril de
2011
17 de abril de
2011
13 de abril de
2011
13 de abril de
2011
13 de abril de
2011
13 de abril de
2011
13 de abril de
2011
17 de abril de
2011
18 de abril de
2011
13 de abril de
¼ pag. Con color
$2,118.56
1/6 página
$910.00
Full page a color
$8,240.00
Portada a color
$6,770.00
Full Page a color
$6,770.00
½ página
$2,535.00
2 páginas (una a
color)
728 x 90 (4)
$12,520.00
600 x 350
$3,000.00
600 x 350
$2,500.00
El Vocero
El Nuevo Día
Primera Hora
Primera Hora
Primera Hora
Vocero
Primerahora.com
Endi.com
Vocero.com
$4,600.00
ROI
Media
Date
Size
Price
El Nuevo Dia
18 de abril de 2011
Cintillo mediano
$ 1,494.00
El Nuevo Dia
19 de abril de 2011
Full page color
$ 8,240.00
El Nuevo Dia
19 de abril de 2011
Robo página
$ 4,160.16
EL Vocero
18 de abril de 2011
Roba página
$ 2,432.00
Primera Hora
19 de abril de 2011
Roba página
$ 3,952.00
Primera Hora
19 de abril de 2011
½ página
$ 2,652.00
Primera Hora
19 de abril de 2011
Pagina full color
$ 6,770.00
Primera Hora
19 de abril de 2011
½ página
$ 2,652.00
Primera Hora
19 de abril de 2011
½ página
$4,352.00
Total :
$ 225,831.16
Return of $3.00 for every $1 invested
$126,000 gain
Thank You