A3/B3 Join the Moonshot for Health Equity in Cancer

Transcription

1 A3/B3 Join the Moonshot for Health Equity in Cancer Institute for Health Care Improvement Orlando, Florida December 12, 2017

2 Inspired by the Cancer Moonshot Every day, every minute matters to patients and we must bring that sense of urgency to our cancer research and care systems; A zip code should not determine one s prognosis. Danielle Carnivalle, Ph.D. VP, Biden Cancer Initiative

3 Introductions Jeanne M. Regnante, Sr. VP, Sustainable Healthy Communities, LLC Laura Lee Hall, COO and Executive VP of Sustainable Healthy Communities, LLC Patricia Doykos, PhD, Director, Bristol Myers Squibb Foundation Gary Puckrein, PhD, President and CEO, National Minority Quality Forum

4 Agenda for today s Workshop (75 min) Background and introduction of workshop worksheet Jeanne (10 min) It Starts with Research- Jeanne (10 min) Enhancing Cancer Screening in Practice- Laura Lee (10 min) Guaranteeing Equity along the Continuum of Care- Patricia (10 min) Mapping Cancer Equity in Accountable Communities- Gary (15 min) Q &A and Workshop Activity (20 min)

5 Session Objectives Identify the factors that make equity in cancer research crucial Discern community and health system strategies for promoting cancer screening, treatment, and outcomes equity Explore the map of cancer disparities in the US Join the Cancer Diverse Communities Working Group These presenters have nothing to disclose

6 Who do we Represent? NMQF Mission is to strengthen the ability of communities and policymakers to eliminate the disproportionate burden of premature death and preventable illness in special populations through the use of evidence-based, datadriven initiatives. Sustainable healthy communities in every zip code SHC s mission is to promote sustainable healthy communities, especially those with diverse and underserved populations, through the provision of actionable data, research, and engagement/training of clinicians and community leaders. Founded in 1998, non profit heath care Research & Policy organization Founded in 2016, A wholly-owned subsidiary of NMQF

7 Diverse Cancer Communities Working Group (CWG)

8 Disparities in disease prevalence and risk The most important diseases that disproportionately affect ethnic minorities: type 2 diabetes cardiovascular disease stroke infectious diseases (HIV/AIDS, HCV,STDs) different types of cancer (lung, CR, prostate, TNBCA, multiple myeloma) 8

9 NCI SEER data and ACR facts and figures report confirms inequalities in the US remain despite innovations (1) Documented cancer health disparities include: higher incidence of breast cancer (the triple-negative subtype) among African American women than women of other racial/ethnic groups substantially higher rates of prostate cancer incidence and death among African American men than men of other racial/ethnic groups higher rates of cervical cancer incidence and death among Hispanic and African American women than women of other racial/ethnic groups (2) Lung cancer is the leading cause of cancer deaths in African Americans (1) (2)

10 Patient Centered Contributors to HC Disparities in Cancer Access to Health Care Mistrust leading to delays Socioeconomic status Tobacco use Alcohol consumption Co-morbidities Access to Genetic Testing Biologic factors REF: Multiple publications in from NCI, ACR, ASCO, ACS

11 Notable Publications The US is dead last out of 11 countries in health equity, Mirror, Mirror, The Commonwealth Report July 2017, (1) Health begins in Communities we need community leadership to reduce disparities IMP National Academy of Sciences, Vital Directions for Health and Health Care, April 2017 (2)

12 Diverse Cancer Communities Working Group Members (CWG) Merck & Co. Amgen, Inc. Bristol-Myers Squibb Company Bristol-Myers Squibb Foundation NIH Precision Medicine: All of Us Takeda Oncology AbbVie, Inc Celgene Corporation Wake Forest Baptist Medical Center Biden Cancer Initiative CancerCare Eli Lilly and Company American College of Surgeons University of Kentucky Healthcare Genentech, Inc. American Society of Clinical Oncology Horizon Blue Cross Blue Shield of New Jersey We are all here for the privilege of helping medically underserved and diverse cancer populations in America be given the same chance at innovation as the rest of America has. We choose to do this by engaging and creating local communities for sustainable cancer care - Jeanne M. Regnante, Chair, Cancer Diverse Communities WG

13 Four Project Goals and Sub Teams Better understand the distribution and impact of cancer among underserved and diverse populations around the country (Cancer Index) Help clinicians increase cancer screening, prevention counseling, and specialist referral in minority and poor communities focus on QI (QI and Clinician Engagement) Promote patient and community understanding of the importance and opportunities for improving cancer outcomes among diverse populations (Patient and Community Engagement) Better understand and increase diversity in cancer clinical research (Diversity in Clinical Research)

14 Our Call to Action Spotlight existing inequities in order to identify and deliver solutions and innovations in cancer screening, referral, access to treatment, care, support and inclusive research for all. Access to Care/ Screening Referral Access to Treatment/ Clinical Research Care Support/Survivorship Development and Delivery of a sustainable, stakeholder community

15 The CWG : How do we achieve results? Three Years (July July 2020) For-profit corporation membership $25K annually Engage multiple expert stakeholders (in CWG and in cancer communities in the US) Year 1: Capture and add to what is known, Deliver Big Data Analytics, assessments, frameworks, rubrics, uncover best practices, convene, expert roundtables, publish Year 2 and 3: Establish, implement, measure and monitor scalable demonstration projects with QI in medically underserved/diverse communities, publish Sustainability and Communication plans

16 How to Join the Moonshot for Healthy Equity: Workhop Exercise Reflection questions on specific cancer equity issue Is health equity in cancer care a strategic priority for your organization backed by resources and attached to clear goals? Which patient population and/or cancer type do you need to improve cancer care access, prevention, screening, treatment, quality and/or outcomes? Is there a domain of the care continuum that you would like to improve? What research or data can help you identify targets for improvement and measure impact of changes made? What non-medical barriers to cancer equity are important in your community? Assessment of current status in your organization Next steps you and your organization can take to advance issue `

17 It Starts with Research..

18 ASCO ABSTRACT NME, 156 Cancer Trials, Conclusions: The proportion of White patients enrolled in the US (88%) is higher than the proportion of Whites in the US population. However, the enrollment of AA and NHPI/AIAN patients is low and below the proportional representation of AA and NHPI/AIAN in the US. While enrollment targets may differ across cancer type and by race, the racial composition of patients enrolled in the trials that support the approval of cancer therapeutics should be reflective of the likely US patient population for whom these agents will be prescribed. The data on enrollment by ethnicity (i.e., Hispanic) was missing or incorrectly reported as race. This trend may contribute to gaps in data regarding clinical trial participation and outcomes among this demographic subgroup. Improvements in collection of ethnicity data are needed. Racial composition in trials supporting the US approval of anti-cancer new molecular entities (NMEs), Lola Fashoyin-Aje1, Laura L. Fernandes2, Steven Lemery1, Patricia Keegan1, Rajeshwari Sridhara2, Jonca Bull3, Richard Pazdur1 1Office of Hematology and Oncology Products, Office of New Drugs, Center for Drug Evaluation Research; 2Office of Biostatistics, Center for Drug Evaluation Research; 3Office of Minority Health, Office of the Commissioner; US Food and Drug Administration

19 What are some of the reasons this is so hard? Lack of Investigator Lack of Investigator outreach to community groups Lack of knowledge of trials groups amongst Primary Care Physicians Lack of Patient and trust lack in direct research involvement in the process Sponsors think it takes too long which then drives cost and limits innovation getting approved Lack of standard data and language systems that note capabilities of sites to sponsors outreach to community Lack of knowledge of trials amongst Primary Care Physicians and lack direct involvement in the process No standard, accepted or shared framework Who are the minority serving sites? Ethnic Minorities are not asked for input into trial design Lack of all Stakeholder Sponsorship of a sustainable set of solutions and goals

20 Our Goal Deliver real progress and bend the curve on Inclusion and Diversity in Cancer Clinical Research in the US consistent with epidemiology of the disease

21 A Diverse Cancer Sub Team Project Interview US Cancer Center leaders in the US (N=8) who engage Ethnic Minorities in Cancer Clinical Research >20-50% of the time - identify their notable practices and publish. Topic Areas: Sponsorship/Leadership Operations and Metrics Patient and Community Engagement Investigator Training and Engagement

22 Overall Early Results (N=4) Inclusion of Ethically Diverse Patient Participants in Clinical Trials (20%-40%) Patient and Community input into research questions and driver of engagement of patients and caregivers is a clear driver of success Culturally and Linguistically Sensitive Communications is delivered by Trusted Community leaders System-wide Engagement and knowledge of community centered Research and Programs (e.g. smoking cessation, screening, resources) System-wide Data Collection Standards Degree of Mentoring for Health Equity practices and research is High down to a high school involvement level Hiring Practices of researchers attract and reflect quality diverse candidates that reflect the patient population that they serve

23 A take home idea Publish a baseline, paper with selected organizational leaders /sponsors to expose good practices and a call to action Identify % of ethnic minorities who are participants in cancer clinical studies in service area (over the last year); find a study where the investigator engaged ethnic minorities consistent with the prevalence of disease partner with them. Identify non-interventional study engagement of ethnic minorities and expose practices Develop an interview guide to capture notable practices and gaps Interview leaders engaged throughout the continuum of care to expose notable practices and expose their recommendations for change Understand how race defined and captured in your organization for studies in general? Understand who are the cancer community leaders/are they involved? When, how and by whom?

24 Enhancing Cancer Screening in Practice: A Pilot QI Program: Laura Lee Hall, PhD

25 Goal 2: Help Clinicians Increase Cancer Screening, Prevention Counseling, and Referral Subteam Leads: Chris Dezii and Laura Lee Hall Remember, we are focused on making a real difference for the under-served, who are not the undeserved.

26 Objectives Pilot QI program or programs on focused region(s)/cancer(s) Under-served and minority patient populations at increased risk or with gaps in care/outcomes Focus on primary care screening/referral Develop template for dissemination of the QI approach more broadly To be applied and integrated with the results from the other subcommittees Targeting specific cancers which are mapped Targeting providers in specific regions with gaps Incorporating best practices identified by other subcommittees (e.g., patient engagement strategies)

27 Which Cancer and Where?

28 Top Age-Adjusted Invasive Cancer Incidence Rates Female Breast Prostate Lung Colon White Black Hispanic Rates are per 100,000 persons and are age-adjusted to the 2000 U.S. standard population

29 Top Age-Adjusted Invasive Cancer Death Rates Female Breast Prostate Lung Colon White Black Hispanic Rates are per 100,000 persons and are age-adjusted to the 2000 U.S. standard population

30 Geography of Top Four Cancers Incidence Death Rates Breast Cancer Prostate Cancer Lung Cancer Colon Cancer

31 How to Make a Change?

32 SHC Toolkit Advisory group with local expert and community participation SHC Index: Predictive modeling report Community assessment Practice assessment Champion training PDSAs/Rapid Cycle Improvement in Practices Ongoing coaching Public communications

33 Toolkit Backbone

34 A Pilot to Sustainably Increase Lung Cancer Screening by Primary Care Practices Working with Underserved and High-risk Populations Pilot quality improvement/practice transformation program for sustainably disseminating lung cancer screening and referral among medically underserved patients in eastern Kentucky The target is eastern (Appalachian) Kentucky, including up to 10 primary care practices, with an estimated reach of a total of 25,000 patients Partnership with local/regional leaders including the Kentucky LEADS program and the KY-ACP Implementation of the SHC Toolkit State and ultimately national dissemination

35 Bristol-Myers Squibb Foundation: Pursuing Equity along the Continuum of Cancer Care Patricia M. Doykos, PhD Director IHI National Forum December 2017

36 Cancer Diverse Communities Working Group: Subcommittee on Patient and Community Engagement

37 Subcommittee : Diversity and Inclusion in Cancer Clinical Research Bernie Rosof, MD, Northwell, SHC, QHC Advisory Ellen Sonet, JD, MBA, CancerCare Michelle Vichnin, MD, FACOG, Merck & Co Patricia M. Doykos, PhD, BMSF SHC Staff - Jeanne Regnante

38 Goal 3: Promote Patient and Community Understanding and Action Objectives: Identify gaps and approaches to understanding and promoting patient and community engagement in cancer research, screening, and treatment, both in community-based projects and in general across the continuum-of-care

39 Bristol-Myers Squibb Foundation: Global Footprint Returning Veterans in the U.S. Cancer in Central and Eastern Europe Lung Cancer in the U.S. Hepatitis in China & India Cancer & CVD in the U.S. HIV and Cancer in Africa The mission of the Bristol-Myers Squibb Foundation is to promote health equity and improve the health outcomes of populations disproportionately affected by serious diseases

40 Goal: Improve access to and utilization of specialty care services and health outcomes of vulnerable populations living with cancers and cardiovascular disease (a-fib, DVT, stroke, heart failure) Health systems strengthening Complete systems of care and expand specialty care delivery for Medicaid and medically underserved patients through collaborations among specialists and community based care/primary care providers Patient engagement and support Enhance patient engagement and community supportive services to optimize specialty care utilization and self care Translate the successful models into services and capacity sustained by reimbursement, other funding sources and enabling institution-level and public health policies.

41 Thought Leadership and Changing Mindset: Equity in Cancer and Specialty Care Briefs

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43 Disparities exist throughout the patient pathway FSG 43

44 The Briefs highlight solutions for equity in specialty care and what s needed to move forward Highlights 10 solutions categorized into three types For each solution, the Briefs will provide a state of the field, that includes the following information: The specific challenges addressed by these solutions Descriptions, examples and data for each solution, with many examples and references to existing research The value proposition of these solutions for patients, payers and providers What s needed to scale the solutions, where to start, and success factors We hope to add to this body of research with case studies, lessons learned and evidence from your work FSG 44

45 Lung Cancer Focused Grants Other Cancer Focused Grants ACCC Medicaid OCCM Initiative Ralph Lauren Community Cancer Center Screening in high risk community Anne Arundel Medical Center QI to speed diagnosis and commencement of treatment Maine Lung Cancer Coalition coordinated statewide screening and care Farmworker Justice skin cancer Yale Cancer Center NCI CCC catchment care for lung, breast, prostate and colorectal cancers Project ECHO apply tele mentoring and collaborative care to cancer Institute for Health Care Improvement QI for therapeutic areas and social determinants of health Thomas Jefferson University/Jefferson Health - integrated and safety net health system screening and care

46 Across these examples, we saw five consistent elements that enabled sustainability and scale Effective use of data to identify disparities and track impact is an essential component of initiatives to improve equity in specialty care. Taking a community-based approach is necessary to fully address health disparities, even for specialty care. Efforts to address health equity require leadership with a systems orientation and an equity mindset. An enabling policy environment is essential to help programs that reduce disparities in specialty care thrive and to encourage and incentivize participation from system actors at all levels. While every organization must take action to address health disparities, no one provider, payer, policy maker or patient can change the system in isolation. Collaboration is fundamental. FSG 46

47 Government Health Plans Healthcare Delivery Organizations & Systems Professional Associations Patient Advocacy / Community Development Health Disparities Data Collection in Medicaid and CHIP The Affordable Care Act of 2010 (Section 4302) requires the Secretary of HHS to establish data collection standards for race, ethnicity, sex, primary language, and disability status, and calls for these categories to be consistently collected and reported in all national population health surveys that rely on self-report. NCI scored sections in the NCI CCC designation/redesignation applications starting in 2017 FDA: 2016 Year of Diversity in Clinical Trials - Enrollment dashboard Aetna s Racial and Ethnic Equality Chairman s Initiative - Voluntary self identification for race and ethnicity of clients % of clients participated - Program development UnitedHealthcare Health Equity Services Program to help find and reduce health disparities. The HES Program does this by making UHC initiatives work better for many different cultures. These initiatives encourage members to be as healthy as they can be, and help members avoid more expensive health care costs. Cancer Care Equity Program at the Dana-Farber Cancer Institute: bridge between research and outreach efforts to address cancer disparities at Dana-Farber Cancer Institute. Moffitt Cancer Center Community Benefit: provides patient-centered and culturally competent outreach, education, training, and resources throughout the greater Tampa Bay and FL to support patients, families, and clinicians in advancing cancer prevention, early detection, clinical care, and research, especially for those at-risk populations disproportionately impacted by the disease. Kaiser Permanente: collaborating with Susan G. Komen Oregon and Southwest Washington, and eight community partners to increase breast cancer screening among Latina women in Oregon. ASCO Strategic Plan for Increasing Racial and Ethnic Diversity in the Oncology Workforce : - Establish a longitudinal pathway for increasing workforce diversity - Enhance ASCO leadership diversity, and - Integrate a focus on diversity across ASCO programs and policies. AACR: The Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved (since 2008) National Medical Association /Congressional Black Caucus Foundation: Professional Development Series to Examine Zika, Cancer Disparities ONS: Social Determinants of Health: A Framework for Studying Cancer Health Disparities and Minority Participation in Research Cancer Support Community: CancerSupportSource, to identify the specific concerns experienced by a patient and provide a tailored and desired response. The 25 items are based upon the IOM s recommended areas of unmet psychosocial need, cover three critical domains (psychosocial, practical, physical) and include a four-item depression subscale. Leukemia & Lymphoma Society: Telephone & Web Education Program in Spanish with top cancer clinicians CancerCare Patient Access and Engagement Report laid the groundwork for understanding the true costs physical, emotional, financial of the cancer experience for patients and families nationwide. National Urban League: Take Action for Health strives to increase mammograms

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49 Supporting Policy and Advocacy - Seizing on emerging enabling policy innovation and change to build implementation projects, e.g. ACA, new lung cancer screening guidelines, new CMS reimbursement for low dose CT-Scan - Evaluation - Capacity - Access, Quality of Care, Health Outcomes, Patient Centered Outcomes - Cost savings - Real-Project-Real-Time-Real-Context TA from Harvard Law School Center for Health Law and Policy Innovation - Storytelling

50 Resources: Issue Briefs, QI Projects, Thought Leader Talks, Think Pieces on Health Equity and Philanthropy

51 Controlling Cancer Outcomes: From Health Disparities to Sustainable Healthy Communities Gary Puckrein, PhD

52 Presentation Overview Community Health About NMQF The Geography of Lung Cancer and Cancer Care The Cancer Working Group

53 Community Health Community health is a product of collaborative networks, where all members in a society contribute to and inform population health. These collaborations include patients, physicians, hospitals, policymakers, insurers, social and environmental services, patient advocacy organizations, medical product discovery and delivery system, and public engagement.

54 A Community-Based Collaborative Health Network Risk Mitigation 54

55 Measuring Network Functions These collaborative networks can produce optimal or suboptimal results. They can be optimized so they deliver effective medical care across diverse populations. Performance measures can be developed that report on how well the integrated network and their component parts are functioning. 55

56 Health Disparities as Suboptimal Performance Health Disparities are a function of communitybased collaborative networks operating suboptimally for a specific cohort. It could be a collective malfunction or the dysfunction could reside in some component part. 56

57 The National Minority Quality Forum (NMQF) The Forum has developed a comprehensive database comprised of over 2 billion patient records, which it uses to define disease prevalence, costs and outcomes for demographic subpopulations at the zip code level 57

58 Big Data: Challenges and Solutions CHALLENGES Volume Rapidly changing Complex technology platforms Different data sets Expert analysis required Outputs not always actionable, understandable A SOLUTION MAKE IT VISUAL

59 GIS-Based Data Visualization NMQF develops maps to provide demographic intelligence about acute and chronic disorders at the zip code level segmented by age, gender, race/ethnicity to: Map any index disease by prevalence, cost, outcomes, comorbidities, socioeconomic status or other data type for any state, MSA, congressional and state legislative districts Define where the unmet needs exist Forecast trends using predictive analytics Produce customized reports to support educational, advocacy and policy efforts 59

60 Key Learnings Geography matters Predictable forces shape markets Consumption patterns can be shaped Resource management can be improved

61 Cancer Working Group

62 Cancer Index Subcommittee Objectives Update and expand the Cancer Index Develop a collaborative project aimed at improving cancer outcomes for underserved patients using NMQF/SHC/ACS unique and substantial data assets

63 Cancer Prevalence Vary Geographically Source data: Medicare Claims

64 Lung Cancer Index 64

65 Lung Cancer and Blacks 65

66 Lung Cancer A Closer Look 66

67 The Geography of Lung Cancer In Medicare Fee for Service

68 Medicare Health Service Areas In 2013 there were over 32,022 zip codes where Medicare fee for service beneficiaries reside. 70% of these beneficiaries reside in 7,000 zip codes, and 70% of lung cancer beneficiaries reside in 7,000 zip codes. In 6,809 zip codes, where 510,100 beneficiaries reside, there was no treated cases of lung cancer in In the remaining 25,213 zip codes, the median prevalence for lung cancer was 1.1% and the median survival years was 1.5 from date of first treatment. 68

69 Lung Cancer Consumption Patterns CLASS Medicare Fee For Service 2013 Median Years of Number of Survival from All Cause Cost Beneficaries First Diagnose Percent of All Cause Cost by Class Crisis Consumers 21, $2,773,026,463 27% Heavy Consumers 134, $6,039,180,385 59% Moderate Consumers 85, $1,180,208,838 12% Light Consumers 43, $177,299,486 2% Low Consumers 21, $25,645, % Total 307,469 $10,195,360,824 69

70 Survival Years by Race Tenth Percentile Prevalence 2013 Race and Ethnicity Number of Beneficaries Ninety Percentile Survival Years Unknown WNH 12, BNH 1, ANH Other Hispanic Native American ,980 Ninety Percentile Prevalence 2013 Race and Number of Ethnicity Beneficaries Survival Years Unknown WNH 12, BNH ANH Other Hispanic Native American ,931 70

71 Community-Based Collaborative Network Treating Lung Cancer Variations In Survival Years By Zip Code as Much as 452% Risk Mitigation 71

72 Cancer Working Group The mission of the Cancer Working Group is to ensure that the benefits of the Cancer Moonshot touches all communities, to make sure no community is left behind. As the moonshot shortens discovery times, the innovative cancer therapies that are developed will need to be efficacious and accessible to all Americans. 72

73 Thank you for your participation Questions? Contact Information: Sustainable Healthy Communities mmunities