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Measuring What Matters - Day 1

Description

Measuring What Matters in Social Determinants of Health for Chronic Illness

There is a known association between social determinants of health (SDoH) and chronic disease disparities, and between chronic disease and health related quality of life (HRQL). Far less is known about associations among SDoH, chronic disease and health outcomes, including HRQL. This symposium proposes to highlight conceptual relationships among these concepts and stimulate research ideas, including novel methodologies to analyze relationships between SDoH and HRQL for people with chronic illness.

View full program here.


   DAY ONE                                   

Session 1: An Overview of SDoH for Health Outcomes
 This session will provide an introduction to the symposium. ISOQOL Past President, Joanne Greenhalgh, will discuss the relevance of this topic to our organization. The primary presenters at this first plenary will provide an introduction to SDoH, including conceptualizations and perspectives of SDoH. The relevance of SDoH to HRQL and its application in addressing outcomes for persons with chronic disease will be discussed.
Objectives:
  • Learn how the topic is relevant to HRQL and ISOQOL
  • Provide an introduction to and perspectives of SDoH
  • Understand how SDoH play a role in chronic disease and health outcomes
Speakers:
  • Joanne Greenhalgh, PhD, Professor of Applied Social Research Methodology, University of Leeds, United Kingdom
  • Ghazala Mir, PhD, Professor of Health Equity and Inclusion, University of Leeds, United Kingdom
  • Alyson Mahar, PhD, Assistant Professor, Health Quality Program, Queen’s University, Canada

Session 2: Addressing SDoH to Improve Health and Well-Being
Representatives from the CDC and NIMHD will discuss conceptualizations of SDoH and strategies for addressing SDoH from research and programmatic perspectives. A community-level intervention to address blood pressure will be used as an example to highlight how clinic and community linked interventions can address SDoH and improve outcomes.
Objectives:
  • Discuss strategies, challenges and opportunities for addressing SDoH
  • Describe examples of federal approaches to addressing SDoH from program and research perspectives
  • Understand challenges and opportunities for clinic and community linked interventions
Speakers:
  • Karen Hacker, MD MPH, Director, National Center for Chronic Disease Prevention and Health Promotion, CDC, United States
  • Deborah Duran, PhD, Senior Advisor Data Science, Analytics and Systems, the National Institute on Minority Health and Health Disparities (NIMHD) at the National Institutes of Health, United States
  • Shari Bolen, MD MPH, Professor of Medicine, The MetroHealth System and Case Western Reserve University, United States

Session 3: Methodological Approaches to Quantify SDoH
This session will address methodological approaches to measuring SDoH. Methodology topics include composite summary indexes, geocoding, and complex systems modeling of causal effects.
Objectives:
  • Learn how to define SDoH for inclusion in research studies
  • Introduction to novel methodologies such as geocoding and complex systems modeling
  • Understand the social predictors of several HRQL outcomes according to machine-learning and other advanced models
Speakers:
  • David Cella, PhD, Professor and Founding Chair, Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, United States
  • Jarrod E. Dalton, PhD, Director, Center for Populations Health Research, Cleveland Clinic, United States
  • Lisa Lines, PhD MPH, Senior Health Services Researcher, RTI International, United States

Contributors

  • Co-Chair: Brittany Lapin, PhD, Associate Professor of Biostatistics, Lerner Research Institute, Cleveland Clinic, United States

    Brittany Lapin, PhD, MPH is Associate Staff in Cleveland Clinic’s Lerner Research Institute’s Department of Quantitative Health Sciences and Associate Professor of Medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University. Dr. Lapin leads the biostatistical team of the Neurological Institute’s Center for Outcomes Research and Evaluation which utilizes patient-reported outcomes and other electronic health record data to produce new medical knowledge and optimize management strategies. She is also heavily involved in ISOQOL, as co-chair of the Proxy Task Force, member of multiple SIGs, and Co-Editor in Chief of Quality of Life Research.

  • Co-Chair: Deborah M. Miller, PhD LISW-S, Professor of Neurology, Mellen Center, Cleveland Clinic, United States

    Deborah M. Miller, PhD, LISW, is a Professor of Neurology in the Cleveland Clinic Lerner College of Medicine and a member of the Professional Staff at the Mellen Center for Multiple Sclerosis Treatment and Research of Cleveland Clinic. She has been a member of the Mellen Center's interdisciplinary-care team since the Center’s opening. She earned her PhD at the Case Western Reserve University School of Applied Social Sciences and is a master’s prepared social worker. Her research interests focus on health services research, studying how social determinants of health effect outcomes for people with chronic illness, and interpreting patient reported measures in assessing outcomes of care. She is a collaborator on protocols to facilitate inclusion of patients and other constituents as partners in the research process. As Principal Investigator, Dr. Miller completed an NIH Funded study “Using the Internet to Improve Self-Management of Chronic Illness”. She led the Council for MS Practice Guidelines in developing care paths for several aspects of MS care. A clinical social worker, her practice interests focus on marital and family adjustment to the consequences of MS and how these individuals can effectively access community resources available to them. She has written and lectured nationally on these subjects.

  • Shari Bolen, MD MPH, Professor of Medicine, The MetroHealth System and Case Western Reserve University, United States

    Dr. Bolen is the Alfred F. Connor Sr. Health Services and Population Health Research Professor, Professor of Medicine and Population and Quantitative Health Sciences at Case Western Reserve University (CWRU), Founding Director of the Population Health and Equity Research Institute at The MetroHealth System, and a general internal medicine physician. Dr. Bolen serves as the Director of Cardiovascular Disease Programs for Better Health Partnership – a regional health improvement collaborative and co-leads the Ohio Cardiovascular and Diabetes Health Collaborative (Cardi-OH) funded by the Ohio Department of Medicaid and Heart Healthy Ohio Initiative funded by the Agency for Health Care Research and Quality. Nationally, she recently served on the Department of Health and Human Services National Clinical Care Commission charged with developing recommendations to congress on addressing gaps in federal programs and policies for persons living with diabetes and serves on the Centers of Disease Control and Prevention National Hypertension Control Roundtable. Her career has focused on implementation of evidence-based strategies and innovative programs within primary care clinics to improve cardiovascular health outcomes and advance health equity in these outcomes with a specific interest in diabetes, obesity, and hypertension. Her primary goal is to improve the care of the patients and communities she serves.

  • David Cella, PhD, Professor and Founding Chair, Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, United States

    David Cella, PhD is Professor and the Ralph Seal Paffenbarger Chair Emeritus in the Department of Medical Social Sciences at the Northwestern University Feinberg School of Medicine. He is an elected member of the National Academy of Medicine and the Academy of Behavioral Medicine Research, and a fellow of the American Society of Clinical Oncology. Dr. Cella developed and is continually refining the Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System for outcome evaluation in patients with chronic medical conditions. He also led the development of the NIH Roadmap Initiative to build a Patient Reported Outcome Measurement Information System (PROMIS), the Neurology Quality of Life (Neuro-QoL) Measurement System, and the Emotional Health domain of the NIH Toolbox. He studies questions regarding quality-of-life measurement in clinical trials, cross-cultural equivalence of quality of life measurement, efficacy of psychosocial interventions in chronic illness, and medical outcomes research. He has published more than 1,000 peer-reviewed articles, most of which focus on the unique contribution that the patient perspective has upon the evaluation of health and health care. Dr. Cella has studied quality of life as a scientific enterprise, bringing the voice of the patient into consideration of value and opportunities for improvement on the healthcare system. For this, he was awarded the NAM Gustav O. Lienhard Award for Advancement of Health Care in 2016.

  • Jarrod E. Dalton, PhD, Director, Center for Populations Health Research, Cleveland Clinic, United States

    Jarrod E. Dalton, PhD is Associate Staff in the Lerner Research Institute's Department of Quantitative Health Sciences and Director of the Center for Populations Health Research at Cleveland Clinic. He is also Associate Professor of Medicine in the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University. Dr. Dalton's expertise is in applying statistical, mathematical and simulation modeling approaches to problems in population health.

  • Deborah Duran, PhD, Senior Advisor Data Science, Analytics and Systems, the National Institute on Minority Health and Health Disparities (NIMHD) at the National Institutes of Health, United States

    Dr. Duran is the Senior Advisor on Data Science, Analytics and Systems to the Director of the National Institutes of Minority and Health Disparities at the National Institutes of Health. She focuses on implicit and explicit biases in data curation, AI and ethics, machine learning algorithms, predictive analytics, risk stratification, unjust implementations, and inclusive natural language processing. She advocates for the inclusion of social determinant of health (SDOH) in big data systems to enable comprehensive diagnostics, treatments, and interventions to reduce health disparities. Prior to this role, she has been the director of science policy, scientific planning, and data analytics for over 20 years, including Performance Director for NIH. She is an author and received two HHS secretarial awards and numerous NIH awards exemplifying her leadership skills and ability to advance science. She strives to ensure health disparity topics benefit from emerging data science innovations, and that researcher adopt the advantages of large data sets and technologies to reduce health disparities. To achieve this end, she is the co-founder of the ScHARe platform designed for population science, including social determinants of health, behavioral and environmental data sets, to provide the advantages of big data for health disparity research. The target audience are women and populations underrepresented in data science, as well as low resource minority serving institutions, community colleges, and those isolated who want to do cloud computing health disparity and health delivery research.

  • Joanne Greenhalgh, PhD, Professor of Applied Social Research Methodology, University of Leeds, United Kingdom

    Joanne Greenhalgh is a Professor of Applied Social Research Methodology at the School of Sociology and Social Policy and Past President of the International Society for Quality of Life Research. Her research has focused on exploring how clinicians use PROMs and other outcome measures in clinical practice. She has conducted a number of systematic reviews of literature in this field. Joanne also has expertise in realist methods and was part of the RAMESES team that developed quality and reporting standards and resources and training materials for realist evaluation.

  • Karen Hacker, MD MPH, Director, National Center for Chronic Disease Prevention and Health Promotion, CDC, United States

    Karen Hacker is the Director of CDC’s National Center for Chronic Disease Prevention and Health Promotion, where she oversees a portfolio that includes Maternal Mortality, School health, obesity prevention, smoking policies and the leading chronic diseases. Dr. Hacker has a long history of public health practice and has held a variety of leadership roles in public health, hospital administration, and academics. Dr. Hacker received her MD from Northwestern University School of Medicine and her MPH from Boston University School of Public Health and continues to see patients as a primary care physician in adolescent medicine.

  • Lisa Lines, PhD MPH, Senior Health Services Researcher, RTI International, United States

    Lisa M. Lines, PhD, MPH, has an extensive background in both managing and contributing to successful research projects for both public- and private-sector clients and has more than 20 years of experience in health care research and consulting. Since joining RTI in 2009, she has amassed experience with program evaluations, large-scale database analyses (including machine learning and other “big data” methods), and interactive decision-analytic models, as well as literature reviews and policy analyses. She has published in a wide variety of subject areas, including health policy and payment reform, health care quality and care experiences, risk adjustment, cost-effectiveness and affordability issues, illness burden, and disparities and inequities.

  • Alyson Mahar, PhD, Assistant Professor, Queen’s University, Canada

    Dr. Mahar is an epidemiologist and health services researcher focused on using routinely collected health and social data to address inequitable healthcare access and delivery. Her primary research is conducted in the areas of cancer and mental health, focusing on cancer care disparities, cancer staging, personalized prognostication, and intersections between cancer and mental health/addiction.

  • Ghazala Mir, PhD, Professor of Health Equity and Inclusion, University of Leeds, United Kingdom

    Ghazala Mir is Professor of Health Equity and Inclusion at the University of Leeds with research interests in health and social inequalities, including religious and ethnic minorities. Her research focuses on the experience of people underserved by health and other public services and she has led work to highlight key research priorities in this field. She leads the multidisciplinary Inequalities Research Network and the international Partnerships for Equity and Inclusion, which bring together academics, advocacy organisations, public services practitioners and policymakers to help reduce the inequalities that affect disadvantaged groups. Her research has been published by the UN Research Institute for Social Development and as case studies of good practice by the Chief Medical Officer and the Economic and Social Research Council.

July 16, 2024
Tue 8:00 AM CDT

Duration 5H 0M

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