Developing El Concilio: A Culturally-Tailored Patient and Family Advisory Council for Spanish-Speaking

Patients

November 5, 2014

City of Hope is located in Duarte, California •National Cancer Institute-designated Comprehensive Cancer Center •Founding member National Comprehensive Cancer Network

An independent biomedical research, treatment and education institution, we are a leader in the fight to conquer cancer, diabetes, HIV/AIDS and other life-threatening diseases. Our medical services include hematology and hematopoietic cell transplantation (HCT), medical oncology, surgery, radiation oncology, pediatrics, and endocrinology.

City of Hope

Department of Supportive Care Medicine

Biller Resource Center

Caregiver Programs Positive Image SupportScreen

Child Life Clinical Social Work Pain & Palliative Medicine Patient Navigation Psychology & Psychiatry Spiritual Care Patient, Family & Community Education School Program

Department of Supportive Care Medicine

Background • Immigrants often:

– Struggle with language difficulties – Lack information – Say that health professionals do not understand them

• Immigrants with cancer have been shown to have:

– Poorer health outcomes – Lower survival rates – More side effects – Poorer quality of life – Greater distress

All of the above may adversely affect their psychological well-being. Therefore, tailoring their involvement in decision-making is critical factor

in facilitating the gold standard in patient-centered care.

Journal of Psychological, Social and Behavioral Dimensions of Cancer, Vol 20 (Oct. 2011), p.10-14.

Why a Spanish Advisory Council?

• As patient populations become increasingly diverse, healthcare organizations are demonstrating increased commitment to providing patient-centered care to vulnerable populations (Wynia and Matiasek, 2006).

• Hispanics comprise nearly 20% of the patient population at City of Hope.

• The Spanish-Speaking Patient and Family Advisory Council allows us to link with the community to:

1. Enhance patient/healthcare team communication 2. Enhance patient education and safety 3. Increase awareness and utilization of supportive resources

Getting Started • Acquired departmental support via Request for Proposal

(RFP) process – Staff protected time – Administrative support – Resources: marketing materials, food funds, incentives

• Created a multi-disciplinary team – An integrated team of staff from various areas of the institution: social

workers, navigator, nursing research, patient resource coordinator, patient health education, and publication staff

• Resulted in what has become a 3-phase process: – Phase I Development – Phase II Sustainability – Phase III Visibility & Utilization

Phase I “To create an advisory council that will give voice and empower Spanish-speaking

patients and caregivers to enhance educational and supportive programs for patients and caregivers at the City of Hope. The council will bridge the language

and cultural gap between Spanish-speaking patients and caregivers and the healthcare team and institution.”

Opportunity

Goals to Meet the Opportunity

Phase I: Development To create a Spanish-speaking, PFAC to inform and pilot linguistically and culturally appropriate educational and supportive care programs for Spanish-speaking patients/caregivers

1) Marketing and recruitment 2) Interview process 3) Council member selection 4) Council member orientation 5) Evaluation

Marketing & Recruitment • Recruited Spanish-speaking adult patients and their families/caregivers who

ranged in: – gender – age (18 and older) – diagnosis (at varying stages of treatment , except newly diagnosed)

• Developed marketing materials for the implementation and launch of our recruitment plan

• Recruitment sources – Spanish Look Good Feel Better – Spanish Yoga Class – Spanish Web site Focus Group – BRC Anniversary Celebration – Spanish Programs Booth – DSCM Leadership Meetings – Health Care Team Members (RN, NP, PA, CSW, etc.)

*An application was included in the recruitment materials with a contact number for questions.

Interview Process and Member Selection

Screening and Interviews ◦ Solicitation of Health Care Team input ◦ Initial telephone screening ◦ Face-face interviews

The Applicants ◦ Total of 19 ◦ 14 interviewed (5 deselected at telephone screening) ◦ 5 not selected due to coping or commitment issues

Nine Concilio members selected ◦ 5 patients, 4 caregivers ◦ Ages 21 to 56 ◦ 8 females and 1 male

Celebratory Mixer ◦ Meet and greet for El Concilio members to meet each other ◦ Introduced El Concilio to the Department of Supportive Care Medicine

New Member Orientation • El Concilio members participated in a half-day orientation on

March 9, 2012

• Training Agenda: – Provision of Council Member Manual – COH’s Mission, Programs and Services – Corporate Compliance (HIPAA) and Safety (with certified interpreter) – Member Expectations & Role of the Council – Overview of Rules, Guidelines and Bylaws of the Council – Effective Communication – Cultural Considerations – Bingo Activity (interactive evaluation method) – Confidentiality Agreement – Program Evaluation

Phase II

Initial Opportunity

Goals to Meet the Opportunity

Phase II: Sustainability Develop a protocol for self-governance and establish a structure for continued linkage and collaboration with the Department of Supportive Care Medicine and the larger institution

1) Mission statement 2) Election of a co-chair 3) Member term-limits 4) Collaboration projects

“The Spanish-Speaking Patient and Family Advisory Council Task Force is committed to the sustainability and success of El Concilio. We are dedicated to the mentoring and training of its members to firmly establish the council as a vehicle for advocacy, collaboration, and linkage to the Department of Supportive Care Medicine and the institution, at large. This relationship

will serve to empower our Spanish-speaking patients, families, and caregivers to actively inform and enhance programs and services at City of Hope.”

El Concilio’s Mission Statement “La misión de El Concilio es de transformar la experiencia y servicios para la comunidad hispana de City of Hope. El Concilio colabora con Miembros del Departamento de Cuidados de Apoyo (Department of Supportive Care Medicine) y con la institución para aportar y educar acerca de la cultura hispana, incorporando elementos esenciales en la provisión de cuidado de salud y apoyo para ofrecer la mejor calidad de vida a cada paciente y sus familiares. “ El Concilio’s mission is to transform the experience and services for the Hispanic community at City of Hope. In collaboration with the Department of Supportive Care Medicine and the institution, El Concilio will contribute and provide education about Hispanic culture, to provide key elements in the provision of healthcare services and support , with the aim of providing the highest quality of life to each patient and their families”.

Accomplishments

• Mission Statement • Election of a member co-chair • Revision of by-laws

Member guidelines as they pertain to attendance (attend at least 9 of 12 meetings) Maximum council size limited to 12 members Staggered term limits (1 yr, 2 yr, 3 yr service)

VOLUNTEER

Yo hablo español

Collaboration Projects

– New Patient & Family Orientation in Spanish – Campus map in Spanish – Buttons that identify El Concilio members – Buttons that identify Spanish-speaking COH volunteers

“Pregúnteme sobre

El Concilio para

Pacientes y sus Familias”

3B 3B 3A

3C 3C 3D

Mapas/Maps PISO LEVEL

Montañas de San Gabriel San Gabriel Mountains

CENTRO BRAWERMAN3A3D CLÍNICAS PARA PACIENTES AMBULATORIOS BRAWERMAN CENTER/OUTPATIENT CLINICS N CENTRO BRAWERMAN CLÍNICAS PARA PACIENTES AMBULATORIOS BRAWERMAN CENTER/OUTPATIENT CLINICS

3B 3C 3 ÁREAS DE PACIENTES DEL CENTRO MÉDICO PRINCIPAL main medical campus patient areas

3A 3D CENTRO BRAWERMAN 2B2C CLÍNICAS PARA PACIENTES AMBULATORIOS BRAWERMAN CENTER/OUTPATIENT CLINICS

City of Hope combina el cuidado compasivo con la mejor y más innovadora ciencia.

HOSPITAL HELFORD HELFORD HOSPITAL

City of Hope combines compassionate care with the best and most innovative science. Our 120+ acre campus is designed to meet the full range of needs of our patients and families — from our state-of-the-art facilities to our beautifully landscaped gardens. This map is designed to help you take advantage of all that is offered at City of Hope. OUTPATIENT CHECK-IN • Most patients must sign in at Ambulatory Care Patient Check-in. Most outpatient clinics are located in the Geri & Richard Brawerman Ambulatory Care Center. • Outpatient Surgery Center is located on the third floor of Michael Amini Transfusion Medicine Center. Outpatient surgery center patients may check in on the third floor. • For the Rita Cooper-Finkel and J. William Finkel Women’s Health Center, please check in directly at the Cooper-Finkel Women’s Health Center. INPATIENT CHECK-IN • All patients and family members must first sign in with the attendant in City of Hope Helford Clinical Research Hospital’s lobby. • Hospital admitting is located adjacent to Helford Hospital’s first floor waiting area. • The Pre-Anesthesia Testing (PAT) Clinic is located on Helford Hospital’s second floor.

2B 2A 2C

2D CENTRO BRAWERMAN2A2D CLÍNICAS PARA PACIENTES AMBULATORIOS BRAWERMAN CENTER/OUTPATIENT CLINICS HOSPITAL HELFORD

HELFORD HOSPITAL CENTRO BRAWERMAN CLÍNICAS PARA PACIENTES AMBULATORIOS BRAWERMAN CENTER/OUTPATIENT CLINICS

2B 2C PISO LEVEL

Montañas de San Gabriel San Gabriel Mountains

HOSPITAL HELFORD HELFORD HOSPITAL

N 2A 2D 2

1

Nuestro centro de más de 120 acres está diseñado para satisfacer toda la gama de necesidades de nuestros pacientes y sus familias —desde nuestras instalaciones de tecnología avanzada a nuestros jardines hermosamente diseñados. Este mapa está ideado para ayudarle a sacar provecho de todo lo que se ofrece en City of Hope. REGISTRO PARA PACIENTES AMBULATORIOS • La mayoria de los pacientes deben registrarse en el Registro para el Cuidado de los Pacientes Ambulatorios (Ambulatory Care Patient Check-in). La mayoria de las clínicas para pacientes ambulatorios están ubicadas en el centro Geri y Richard Brawerman. • El Centro de Cirugía para Pacientes Ambulatorios se encuentra en el tercer piso del Centro de Medicina Transfusional Michael Amini (Michael Amini Transfusion Medicine Center). Los pacientes ambulatorios del centro de cirugía pueden registrarse en el tercer piso. • Para el Centro para la Salud de la Mujer Rita Cooper Finkel y J. William Finkel (Women’s Health Center Rita Cooper Finkel and J. William Finkel), regístrese directamente en el Centro para la Salud de la Mujer Rita Cooper Finkel y J. William Finkel. REGISTRO PARA PACIENTES INTERNADOS • Todos los pacientes y familiares deben primero registrarse con el personal de asistencia en el vestíbulo del Hospital Helford (Helford Hospital) de City of Hope. • El centro de admisiones del hospital está situado en el primer piso al lado de la sala de espera en el hospital Helford. • La clínica de evaluación preanestésica (PAT, por sus siglas en inglés) se encuentra en el segundo piso del Hospital Helford. City of Hope es un centro libre de tabaco.

CENTRO BRAWERMAN CONSULTE PACIENTES AMBULATORIOSCLÍNICAS PARA AL INTERIOR BRAWERMAN CENTER/OUTPATIENT CLINICS

PISO LEVEL

Please refer to the inside page

CENTRO BRAWERMAN CLÍNICAS PARA PACIENTES AMBULATORIOS BRAWERMAN CENTER/OUTPATIENT CLINICS CENTRO BRAWERMAN CLÍNICAS PARA PACIENTES AMBULATORIOS BRAWERMAN CENTER/OUTPATIENT CLINICS

PISO LEVEL

CENTRO BRAWERMAN CLÍNICAS PARA PACIENTES AMBULATORIOS BRAWERMAN CENTER/OUTPATIENT CLINICS

Montañas de San Gabriel San Gabriel Mountains N B

City of Hope is a tobacco free facility. CENTRO AMINI AMINI CENTER CENTRO BRAWERMAN

CLÍNICAS PARA PACIENTES AMBULATORIOS BRAWERMAN CENTER/ OUTPATIENT CLINICS

HOSPITAL HELFORD HELFORD HOSPITAL CENTRO MÉDICO PRINCIPAL

MAIN MEDICAL CENTRO PARA LA SALUD DE LA MUJER WOMEN’S HEALTH CENTER Servicios de Interpretación

Interpreter Services 626-256-HOPE (4673) ext. 62282

1500 East Duarte Road Duarte, CA 91010-3000 800-826-HOPE (4673) www.cityofhope.org

Phase III Vision

Opportunity

Goals to Meet the Opportunity

Phase III: Visibility & Utilization To increase El Concilio’s visibility within the institution to further develop collaborative relationships

2013-2014 Phase III

Sustainability & Visibility

Solidify key partnerships with the institution

Expand member education/training

Council expansion

Administrative support

Sustainable Program Infrastructure

Timely Opportunity!

• City of Hope launches Latino Enterprise initiative in 2013

• Human Resources via Diversity and Inclusion Council appoints Glenn Llopis as consultant to El Concilio – Revamp of mission statement and creation of

logo/value proposition/tagline – Official institutional endorsement at Hispanic Pipeline

in the Healthcare and Biomedical Fields summit (Dec. 2, 2013)

– Featured stories in the Healthy Hispanic Living online magazine

El Concilio’s Mission Statement

Improve the overall patient-family experience for Spanish

speaking Hispanics at City of Hope through education, translation, information and easy navigation of resources and services to foster high-trust relationships and save lives.

El Concilio Tagline: Inform – Educate – Connect

Value Proposition

INFORM: El Concilio is a patient-family advisory group that is committed

to providing the tools and resources to help City of Hope’s Spanish-language patients make better decisions by being better informed about their healthcare.

EDUCATE: El Concilio provides a positive, trustworthy patient experience

delivered in a safe, consultative environment that is personalized, engaging, and welcoming which encourages an ongoing educational dialogue.

CONNECT: El Concilio is committed to embracing the importance of

Hispanic cultural values to most effectively translate and communicate to patients and their families.

El Concilio Desired Outcomes

• Earn trust from the patient and his/her family

• Increase engagement and a more positive medical

treatment experience

• Patients and their families share the positive experiences they have had at City of Hope with the community at large.

www.healthyhispanicliving.com

Successes

Key Partnerships

Human Resources Stephanie Neuvirth, Chief HR and Diversity Officer,

and Kenna Cottrill, OD Consultant, and The Latino Enterprise Initiative

Diversity and Inclusion Council

• Revamp of COH’s Spanish language website • Healthy Hispanic Living online magazine with feature

articles from Nellie, Liz & Blanca

Successes

Key Partnerships continued

The Biller Resource Center – utilizes El Concilio’s feedback to enhance BRC events and programs

Patient Education – utilizes El Concilio’s feedback to enhance educational materials and workshops for the Spanish-speaking community

Successes

Council Expansion and Education

Intensive recruitment led from 5 to 10 members Provided continued training/education via Patient and Family Centered Care (PFCC)Intensive Training

Seminar in SF: March 31–April 4, 2014

Campus Tour: June 4, 2014 • New patient Services • Population Sciences Research Consents • Financial Counselors • Biller Resource Center • Evaluation and Treatment Center (urgent care) • Amini Blood Donor Center

Ongoing Endeavors

• Revamp recruitment strategies to include staff liaisons from outside the department

• Fill staff Co-chair position

• Expand the council’s infrastructure – Solidify institutional partnerships – Diversify staff liaison expertise and involvement

• Latinos for Hope (staff-led organization) • Center of Community Alliance for Research & Education

(CCARE) • Collaborations with Patient and Family Advisory Council

Our Pearls of Wisdom

• Don’t Reinvent the Wheel

– Borrow and modify from other programs • The Institute for Patient and Family Centered Care

has webinars and educational materials for direction

• Use other models of patient councils for guidelines – We used the model of the Patient and Family Advisory

Council at COH and resource/education from other non-cancer Spanish PFAC’s to meet our needs

Pearls of Wisdom

• Leadership Matters – Co-chairs with vision, drive and commitment – Dedicated staff members – Established administrative support – Incorporate mentorship, skills-building and

education for both staff and members

• Find Staff Champions – Sponsors and mentors

• Key stakeholders that will support the efforts and link to opportunities and initiatives

Pearls of Wisdom

• Evaluation is an on-going process

Pearls of Wisdom

• Re-evaluation – What is working/what is not – Foster and model transparency – Reevaluate commitments – Take time off for this process if needed

*For more information on our process, view our story at: http://www.healthcarecommunities.org/DesktopModules/Bring2min

d/DMX/Download.aspx?portalid=3&EntryId=83043

Thank you!

Coming together is a beginning. Keeping together is progress. Working together is success.

-Henry Ford