Tackling Health Disparities: Improving Healthcare Delivery Systems for Cancer Care Steve Clauser, PhD, MPA Program Director Alyzza Dill, MPH Program Associate Healthcare Delivery & Disparities Research
Objectives • Patient-Centered Comparative Effectiveness Research — What is it? • Engagement —How does PCORI engage patients & stakeholders in research? • Addressing Health Disparities & Improving Healthcare Systems – What are we doing in intervention research to address cancer care disparities and improve health equity? • Success —How does this approach work? • Sustainability —What is next in bringing these interventions to scale and making a difference in the lives of patients? 2
Patient-Centered Comparative Effectiveness Research: What is it? 3
About PCORI Authorized by Congress as an independent research institute through the Patient Protection and Affordable Care Act. Funds comparative clinical effectiveness research (CER) that engages patients and other stakeholders throughout the research process. Seeks answers to real-world questions about what works best for patients based on their circumstances and concerns.
How is Our Work Different? • We fund research on which care options work, for whom, under which circumstances. • We focus on answering questions most important to patients and those who care for them. • We aim to produce evidence that can be easily applied in real-world settings. • We engage patients, caregivers, clinicians, insurers, employers and other stakeholders throughout the research process. • This makes it more likely we’ll get the research questions right and that the study results will be useful and taken up in practice. 5
The Research We Fund is Guided by Our National Priorities for Research Assessment of Prevention, Improving Healthcare Communication & Diagnosis, and Treatment Systems Dissemination Research Options Accelerating PCOR and Addressing Disparities Methodological Research
Healthcare Delivery and Disparities Research: Program Goals • To support studies of the comparative effectiveness of alternate features of healthcare systems designed to optimize the quality, access, outcomes, and/or efficiency of care for the patients they serve. • To support comparative effectiveness research that will identify best options for reducing and eliminating disparities in health and healthcare outcomes. • To support studies that will provide information of value to patients, their caregivers and clinicians, as well as to healthcare leaders, regarding which features of systems lead to better and equitable patient-centered outcomes. 7
Engagement: How does PCORI engage stakeholders in research? 8
Who Are Our Stakeholders? Faith Based Caregivers/Family Members Organizations Community & Churches Clinicians Organizations Policy Makers Patients/Consumers Industry Hospitals/Health Systems Training Institutions Patient/Caregiver Advocacy Organizations
How We Engage Stakeholders Merit Review Advisory Panels Panels Speakers Bureau Pipeline to Proposal Awards Webinars and Engagement Awards Workshops Ambassadors
Why Engage? To influence research to To establish trust and a To encourage successful be patient-centered, sense of legitimacy in uptake and use of relevant, and useful research findings research results
Addressing Health Disparities & Improving Healthcare Systems: What are we doing in intervention research to address cancer care disparities and improve health equity? 12
Health Delivery and Disparities Research: Framework Medicare reimbursement, Medicaid Disparities Federal health reform, National Health reimbursement, Accreditations, etc. Policy Environment Hospital performance data, state health Community-based State Health Policy reform, etc. resources, Churches, Environment Local hospital services, Local Local Community professional norms, Caregivers, Friends, Environment etc. Network support, Social Media, etc . Organizational Organization leadership, Delivery and/or Practice Setting system design, Clinical decision Provider/Team support, etc . Family & Socio-demographics, Social Insurance coverage, Communication Supports Comorbidities, Patient skills, cultural care preferences, competency, Individual Behavioral factors, staffing mix, team Patient Cultural perspectives. culture, role definition, etc. 13 S.H. Taplin et al “Introduction: Understanding and influencing multilevel factors across the cancer care continuum. JNCI 2012 May: 2012(44)
Cancer Health Disparities Research Challenges • Cancer affects people of all backgrounds, however the burden is greater for specific populations (e.g. racial/ethnic minorities, low- socioeconomic groups, people in geographically isolated areas). • The communities that experience cancer health disparities are also significantly underrepresented in cancer clinical trials. • Cancer disparities research is needed to understand and address why some groups are more likely to develop cancer, experience cancer-related health problems, or die from cancer more than other groups. • Researchers are working to design and test interventions that address the various drivers of disparities in different population groups. 14
Healthcare Delivery and Disparities Research: Projects within Specific Health System Levels Disparities Evaluating the Impact of Improving Advanced Cancer Patient-centered Oncology National Health Policy Patient-Centered Care by Enabling Care (PI: Sarah Scholle) Environment Goals of Care Discussions (PI: Nina Bickell) State Health Policy Environment Local Community Environment Nueva Vida Intervention: Eliminating Patient Identified Improving QOL in Latina Breast Socio-legal Barriers to Cancer Organization Cancer Survivors and their Care (PI: Tracy Battaglia) and/or Practice Caregivers (PI: Kristi Graves) Setting Provider/Team Family & Social Supports Building a Multidisciplinary Collaborative Care to Reduce Bridge Across the Quality Depression and Increase Cancer Individual Chasm in Thoracic Oncology Screening among Low-Income Patient (PI: Raymond Osarogiagbon) Urban Women (PI: Jonathan Tobin) 15
HDDR Portfolio by Care Continuum Treatment/ End of Life/ Prevention Screening Diagnosis Survivorship Management Palliative Care n= 14 n= 7 n= 0 n= 3 n= 129 n= 7 The HDDR funded portfolio addresses multiple phases of the healthcare continuum, ranging from prevention, and various phases of treatment, to survivorship and end of life. 16
HDDR Projects Across the Cancer Care Continuum End of Life/ Treatment/ Prevention Screening Diagnosis Survivorship Palliative Management Care Prevention Cultural tailoring of educational materials to minimize disparities in HPV vaccination (PI: Amanda Dempsey) Screening Comparing Interventions to Increase Colorectal Cancer Screening in Low-Income and Minority Patients (PI: Susan Rawl) Diagnosis **Gap Area in the HDDR Portfolio** Treatment/ Mobile Application for Improving Symptoms and Adherence to Oral Management Chemotherapy in Patients with Cancer (PI: Joseph A. Greer) Survivorship Evaluation Cancer Survivorship Care Models (PI: Holly Mead) End of Life/ Computerized “PAINRelieveIt” Protocol for Cancer Pain Control in Palliative Hospice Care (PI: Robert Molokie) 17
Success How does this approach work? 18
Increasing CRC Screening among Hispanic Primary Care Patients PI: Ron Myers, DSW, PhD Thomas Jefferson University
Increasing CRC Screening among Hispanic Primary Care Patients PI: Ron Myers Background � Colorectal cancer (CRC) screening rates are significantly lower in Hispanics than in non- Hispanic whites (47% and 62% respectively). � A mailed intervention (a stool blood test kit, instructions for scheduling a screening colonoscopy, and a reminder) is an established way to promote CRC screening. � This study tests a new method to maximize CRC screening rates in Hispanic patients. Methods � Research Question: This project tested whether telephone-based decision support and navigation can significantly boost CRC screening rates in Hispanic patients. � Comparators: A mailed + decision support and navigation intervention arm versus a mailed intervention only arm. � Sample: n=400 Hispanic patients age 50-75 years of age, non-adherent to CRC screening � Primary outcome: CRC screening adherence within 12 months after recruitment to study. Findings � At 6 months, the decision support + navigation group showed a higher level of CRC screening adherence compared with the group receiving the mailed intervention only. 20
Nueva Vida Intervention to Improve Quality of Life in Latina Breast Cancer Survivors and their Caregivers Kristi D. Graves, Ph.D.
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Evolution of ‘Engaged’ Partnership • Community-Based Organization: Nueva Vida (Washington, DC) o Successful program to address needs and improve QOL of Latina Survivors and Caregivers o Trusted relationship with Latino families • Academic Partner: Georgetown o Successful prior research with Latina breast cancer survivors o Significant interest in intervention research and engaging patients and families
Team: Expanded Connections • Leveraged existing relationships – Gilda’s Club New York City (NY) – Latinas Contra Cancer (CA) – SHARE (NY, NY) • Invited internal and external clinicians, patients, caregivers, researchers and advocates
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