About

Julie C. Lima is an Associate Professor of the Practice of Health Services, Policy and Practice at Brown University. She holds an MPH from Boston University with concentrations in social and behavior sciences and epidemiology/biostatistics, as well as a PhD in sociology with a concentration in population studies from Brown University. Since 2002, she has been affiliated with Brown's Center for Gerontology and Health Care Research, where she serves as the expert on data compliance and human subjects research regulatory matters. Dr. Lima leads the Regulatory & IRB team and the Data Standards & Sharing Team, and she is an executive member of the Ethics & Regulation Core of the NIA IMPACT Collaboratory, focusing on the ethical and regulatory issues related to embedded pragmatic clinical trials, especially those involving patients living with dementia and their care partners.

Research topics

• Computer Science
• Medicine
• Gerontology
• Nursing
• World Wide Web

Selected publications

• A Million Person Study Innovation: Evaluating Cognitive Impairment and other Morbidity Outcomes from Chronic Radiation Exposure Through Linkages with the Centers for Medicaid and Medicare Services Assessment and Claims Data

  Radiation Research · 2024-10-28 · 9 citations

  articleOpen access

  The study of One Million U.S. Radiation Workers and Veterans, the Million Person Study (MPS), examines the health consequences, both cancer and non-cancer, of exposure to ionizing radiation received gradually over time. Recently the MPS has focused on mortality patterns from neurological and behavioral conditions, e.g., Parkinson's disease, Alzheimer's disease, dementia, and motor neuron disease such as amyotrophic lateral sclerosis. A fuller picture of radiation-related late effects comes from studying both mortality and the occurrence (incidence) of conditions not leading to death. Accordingly, the MPS is identifying neurocognitive diagnoses from fee-for-service insurance claims from the Centers for Medicare and Medicaid Services (CMS), among Medicare beneficiaries beginning in 1999 (the earliest date claims data are available). Linkages to date have identified ∼540,000 workers with available health information. Such linkages provide individual information on important co-factor and confounding variables such as smoking, alcohol consumption, blood pressure, obesity, diabetes and many other health and demographic characteristics. The total person-level set of time-dependent variables, outcomes, organ-specific dose measures, co-factors, and demographics will be massive and much too large to be evaluated with standard software. Thus, development of specialized open-source software designed for large datasets (Colossus) is nearly complete. The wealth of information available from CMS claims data, coupled with individual dose reconstructions, will thus greatly enhance the quality and precision of health evaluations for this new field of low-dose radiation and neurocognitive effects.

  PublisherOA PDFDOI

• Protecting seriously ill populations during pragmatic clinical trials

  Journal of the American Geriatrics Society · 2023-03-22 · 3 citations

  articleOpen access

  Pragmatic clinical trials (PCTs) emphasize real-world effectiveness methodology to address the limitations of results from explanatory randomized clinical trials (RCTs), which often fail to translate to real-world medical practice. An inherent tension in the conduct of PCTs is that the research must impose a minimal burden on patients and health care institutions. PCTs prioritize outcome measures from existing data sources to minimize data collection burden; however, a lack of patient-reported outcomes may result in gaps in safety for vulnerable populations, such as those with serious illnesses. One proposed standard for judging the readiness of a study for a pragmatic trial is a ranking system that assigns PCTs a lower rank if they impose additional data collection burdens. However, this results in the wide use of measures of health care utilization and costs while patient experience measures, which could capture adverse unintended consequences, are omitted. In this article, we make the case for a risk-based approach to imposing additional data collection in PCTs to capture potential safety and patient experience outcomes, using examples from "real life" implemented interventions to improve end-of-life care through the Liverpool Pathway and through the implementation of Physician Orders for Life Sustaining Treatment (POLST) in Oregon.

  PublisherOA PDFDOI

• An Interdisciplinary Videoconference to Improve Transitions of Care and Reduce Readmission, Cost, and Post-Acute Length of Stay in a Teaching and Community Hospital

  Journal of the American Medical Directors Association · 2023-10-10 · 4 citations

  articleOpen access
  PublisherOA PDFDOI

• Feeding tube dependence among older stroke patients with feeding tubes (P18-10.001)

  Neurology · 2022-05-03

  article

  To describe the clinical course of older stroke patients discharged with feeding tubes, and among patients admitted to a skilled nursing facility (SNF), identify patient and SNF factors associated with feeding tube removal.

  PublisherDOI

• Home-delivered meals for people with dementia: Which model delays nursing home placement? - Protocol for a feasibility pilot

  Contemporary Clinical Trials · 2022-08-30 · 4 citations

  articleOpen access
  PublisherOA PDFDOI

• The Benefits of Culture Change in Nursing Homes—Obtaining Nationally Representative Evidence

  Journal of the American Medical Directors Association · 2021-08-20 · 5 citations

  articleOpen access1st authorCorresponding
  PublisherOA PDFDOI

• Medical Staff Organization in Nursing Homes: Scale Development and Validation

  UNC Libraries · 2021-07-01

  articleOpen access

  PURPOSE: To construct a multidimensional self-report scale to measure nursing home (NH) medical staff organization (NHMSO) dimensions and then pilot the scale using a national survey of medical directors to provide data on its psychometric properties. DESIGN AND METHODS: Instrument development process consisting of the proceedings from the Nursing Home Physician Workforce Conference and focus groups followed by cognitive interviews, which culminated in a survey of a random sample of American Medical Directors Association (AMDA) affiliated medical directors. Analyses were conducted on surveys matched to Online Survey Certification and Reporting (OSCAR) data from freestanding nonpediatric nursing homes. A total of 202 surveys were available for analysis and comprised the final sample. RESULTS: Dimensions were identified that measured the extent of medical staff organization in nursing homes and included staff composition, appointment process, commitment (physiciancohesion; leadership turnover/capability), departmentalization (physician supervision, autonomy and interdisciplinary involvement), documentation, and informal dynamics. The items developed to measure each dimension were reliable (Cronbach's alpha ranged from 0.81 to 0.65).Intercorrelations among the scale dimensions provided preliminary evidence of the construct validity of the scale. IMPLICATIONS: This report, for the first time ever, defines and validates NH medical staff organization dimensions, a critical first step in determining the relationship between physician practice and the quality of care delivered in the NH.

  PublisherDOI

• Barriers to identifying residents with dementia for embedded pragmatic trials: A call to action

  Journal of the American Geriatrics Society · 2021-11-02 · 3 citations

  articleOpen access

  Peer Reviewed

  PublisherOA PDFDOI

• Corrigendum to: Nursing Home Culture Change Practices and Survey Deficiencies: A National Longitudinal Panel Study

  The Gerontologist · 2021-04-22

  erratumOpen access
  PublisherOA PDFDOI

• Ethical and Regulatory Issues for Embedded Pragmatic Trials Involving People Living with Dementia

  eYLS (Yale Law School) · 2020-01-01 · 1 citations

  articleOpen access

  Embedded pragmatic clinical trials (ePCTs) present an opportunity to improve care for people living with dementia (PLWD) and their care partners, but they also generate a complex constellation of ethical and regulatory challenges. These challenges begin with participant identification. Interventions may be delivered in ways that make it difficult to identify who is a human subject and therefore who needs ethical and regulatory protections. The need for informed consent, a core human subjects protection, must be considered but can be in tension with the goals of pragmatic research design. Thus it is essential to consider whether a waiver or alteration of informed consent is justifiable. If informed consent is needed, the question arises of how it should be obtained because researchers must acknowledge the vulnerability of PLWD due in part to diminished capacity and also to increased dependence on others. Further, researchers should recognize that many sites where ePCTs are conducted will be unfamiliar with human subjects research regulations and ethics. In this report, the Regulation and Ethics Core of the National Institute on Aging Imbedded Pragmatic Alzheimer’s disease (AD) and AD-related dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory discusses key ethical and regulatory challenges for ePCTs in PLWD. A central thesis is that researchers should strive to anticipate and address these challenges early in the design of their ePCTs as a means of both ensuring compliance and advancing science.

  PublisherOA PDF

Frequent coauthors

• Susan C. Miller

  Brown University

  108 shared

• Vincent Mor

  Providence College

  55 shared

• Pedro Gozalo

  Providence College

  52 shared

• Orna Intrator

  Veterans Health Administration

  39 shared

• Margot L. Schwartz

  Abt Global (United States)

  38 shared

• Susan L. Mitchell

  Harvard University

  33 shared

• Melissa A. Clark

  Providence College

  29 shared

• Joan M. Teno

  Providence College

  26 shared

Labs

• Lima, Julie Researchers@BrownPI

Education

• Ph.D., sociology with a concentration in population studies

  Brown University

• Other, social and behavior sciences and epidemiology/biostatistics

  Boston University