ENGAGING PATIENTS ACROSS THE CANCER CARE CONTINUUM

MARJORY CHARLOT, MD, MPH, MSCSECTION OF HEMATOLOGY & ONCOLOGYBOSTON UNIVERSITY SCHOOL OF MEDICINE

1/30/18

No Financial Disclosures

MY BACKGROUND

Boston University/Boston Medical Center:

• Clinical expertise: Lung cancer and caring for racial/ethnic minority and low SES populations

• Administrative: Medical Director of Cancer Clinical Trials

• Research focus: cancer disparities and community engagement research

• Teaching/Committee: Resident education and Fellow training/ Faculty development and diversity

OVERVIEW

• Background on “Engagement in Research”

• Patient Navigation Research Program

• PCORI Eugene Washington Engagement Award

ENGAGEMENT IN RESEARCH

“…meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process – from topic selection through design and conduct of research to dissemination of results.”

Patient Centered Outcome Research Institute (PCORI) website posted February 5, 2014 and updated October 12, 2015

Carmen and Workman, Patient Education and Counseling 2017

COMMUNITY PARTNERSHIPS

• Community partnership and participatory approaches re-emerged…as the academic and public health communities struggle to address the persistent problem of health inequities.

• These approaches combine inquiry, empowerment and capacity-building strategies to bridge the gap between knowledge produced through research and translation of knowledge into interventions and policies to improve health.

Viswanathan, Ammerman, Eng, et al. Community-Based Participatory Research: Assessing the Evidence, Evidence Report/Technology Assessment No. 99, RTI-University of North Carolina, Rockville, MD: Agency for Healthcare Research

and Quality, July 2004.

PATIENT NAVIGATION RESEARCH PROGRAM(PNRP)

• National study involving 9 NCI funded sites and over 12,000 patients

• Designed to address poor cancer outcomes among low income, underinsured, and racial/ethnic minority populations

• Tested the effectiveness of navigation in decreasing the time to diagnostic resolution for breast, cervical, colon, and prostate cancer screening abnormalities

• Patient navigation found to modestly improve the time to diagnosis for cancer screening abnormalities

STUDY DESIGN OF BOSTON PNRP

• Quasi-Experimental design among 6 Boston community health centers (CHCs)

• Study Eligibility: Women over the age of 18 with a breast or cervical cancer screening abnormality at one of the participating CHCs from January 1, 2007-January 1, 2009

• Intervention: Patient navigators were trained to identify and document barriers to care, develop individual plans to address barriers, and followed women to diagnostic resolution of screening abnormality or end of treatment.

• Data collection: Navigator logs, EMR, and manual chart abstraction

BOSTON PATIENT NAVIGATIONRESEARCH PROGRAM (PNRP)

Six Boston CHCs

Breast PN(control for Cervical)

Cervical PN(control for Breast)

CHC 1 CHC 2

CHC 4 CHC 5

CHC 3

CHC 6

BOSTON PNRP RESULTS

• Over 3000 patients participated in the research program

• Patient navigation decreased the time to diagnostic resolution for both breast and cervical cancer screening abnormalities

• Patient navigation reduced the number of patients who never achieved diagnostic resolution of their cancer screening abnormality

PATIENT AND NAVIGATOR RACE AND LANGUAGE CONCORDANCE: SECONDARY ANALYSIS OF THE BOSTON PNRP

• Objective: To conduct a secondary analysis using Boston PNRP data to assess the impact of race/ethnicity and language concordance on time to diagnostic resolution of cancer screening abnormalities

• Hypothesis: Patient and navigator race/ethnicity and language concordance reduces time to diagnostic resolution of breast and cervical cancer screening abnormalities.

RACE AND LANGUAGE CONCORDANCE IN THE BOSTON PNRP

Charlot et al Cancer 2015

NAVIGATOR CHARACTERISTICS

Total N=23(Column %)

Age Category 24-2930-3940-4950-59Missing

6 (26)1 (4)3 (13)1 (4)12 (52)

Race/Ethnicity WhiteBlackHispanicAsianMissing

13 (57)4 (17)3 (13)1 (4)2 (9)

Language EnglishSpanishVietnameseOther

18 (78)3 (13)1 (4)1 (4)

Number of Patients Mean ±SDMedianRange

64±82362-307

BOSTON DEMOGRAPHICS

2010 US Census Bureau Data

BMC DEMOGRAPHICS

UNITED STATES DEMOGRAPHICS

2016 US Demographics, Kaiser Family Foundation

DOES RACE OR LANGUAGE CONCORDANCE MATTER?

Charlot et al Cancer 2015

IS THE EFFECT OF RACE OR LANGUAGE CONCORDANCE THE SAME FOR ALL

GROUPS?

Charlot et al Cancer 2015

ESTABLISHING A MECHANISM FOR PATIENT POWERED CANCER RESEARCH

• Major advances in cancer treatments including targeted therapy and immunotherapy

• Participation in clinical trials have led to these advancements in cancer care

• Not all racial/ethnic groups have the equal opportunity

to contribute to or benefit from these achievements

ASCO CLINICAL CANCER ADVANCE OF THE YEAR

• 2016: Cancer Immunotherapy

• 2017: Immunotherapy 2.0

• Immunotherapy: “…unleash the body’s immune system to attack cancer” (Julie Vose, MD 2015-2016 ASCO President)

FDA APPROVED INDICATIONS FOR IMMUNOTHERAPY

• Melanoma

• Lung Cancer

• Bladder Cancer

• Renal Cell Cancer

• Hepatocellular Cancer

• Head and Neck Cancer

• MSI-High or MMR deficient tumors• Colon, Endometrial, Gastric, Thyroid, etc

• Soon: Triple Negative Breast Cancers (I-SPY 2 trial)

CHECKMATE 017: NIVOLUMAB V. DOCETAXEL IN ADVANCED SCC OF LUNG

Brahmer et al. N Engl J Med 2015;373:123-35.

CHECKMATE 057: NIVOLUMAB V. DOCETAXEL IN ADVANCED NON-SQUAMOUS LUNG CANCER

Borghaei et al. N Engl J Med 2015;373:1627-39.

LUNG CANCER SEER STATISTICS BY RACE/ETHNICITY

BARRIERS TO CANCER TRIALS

New York Times December 23, 2016

OPPORTUNITY FOR ENGAGEMENT

Low clinical trial participation is multifactorial:

• Investigator/Sponsor

• Patient

• Provider

• System (Hospital/Clinic)

SO WHAT FOR WHAT?

BARRIERS TO CANCER CARE = BARRIERS TO CLINICAL TRIAL PARTICIPATION

Barriers to clinical trials• Poverty

• Fear

• Health system

• Mistrust

• Information/Education

Sprague Martinez, Freeman, and Winkfield, The Oncologist 2017

OUR PARTNERSHIP

Eugene Washington PCORI Engagement Awards

Knowledge Awards

Training andDevelopment

Awards

Dissemination Awards

PCOR/CER Meeting and Conference Support Awards

•

•

Develop and strengthen

channels for disseminating and

implementing PCOR and CER

findings

Build capacityfor participating

in PCOR and CER and create ways

to connect patients,

caregivers, clinicians, and

other healthcare stakeholders with

the research community

Increase knowledge about how consumers of

healthcare information view,

receive, and make use of

PCOR and CER

Provide organizations with

funding for meetings and

conferences that align with PCORI’s mission and aim to

facilitate expansion of

PCOR and CER

PATIENT ENGAGEMENT

• Established an 8 member patient advisory council (PAC)

• PAC will be developing a strategic vision for cancer research using the charette process

• Project goals• Develop and implement activities to support the strategic vision

of the PAC • Conduct both a process and outcome evaluation of the PAC

planning process and activities• Disseminate findings locally and nationally

Boston University CTSI Community Engagement Team

POTENTIAL OUTCOMES OF ENGAGEMENT

• Advance the science of community engagement in the area of cancer care

• Develop formative partnerships with our patient population to improve health and well being of our local community

FUTURE DIRECTIONS

• Utilize patient/community engagement to catalyze research innovation

• Develop models that foster partnerships between patients, researchers, providers, and other key stakeholders in cancer research

• Study the scientific rigor of patient/community engagement models

FUTURE DIRECTIONS

Further develop a research career that advances the field of cancer disparities/health equity research thru:

• Engagement

• Patient-centered outcomes research methods

• Implementation Science

• Communication

ACKNOWLEDGEMENTS

Karen Freund

Tracy Battaglia

Linda Sprague Martinez

Elmer Freeman

BMC Cancer Care PAC