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Precision in Symptom Self-Management (PriSSM) Center

PriSSM Center

Precision in Symptom Self-Management (PriSSM) Center

 

Overview

The Precision in Symptom Self-Management (PriSSM) Center is an interdisciplinary collaboration at Columbia University School of Nursing that is supported by a 5-year National Institute of Nursing Research (NINR) grant (P30 NR016587). This Center of Excellence in Self-Management of Symptoms core grant is led by Suzanne Bakken, PhD, RN, FAAN and Kathleen T. Hickey, EdD, FNP, ANP, RN, FAAN (Multiple Principal Investigators) and is being conducted in partnership with the Center for Home Care Policy and Research of the Visiting Nurse Service of New York. The goal of the PriSSM Center is to advance the science of symptom self-management for Latinos through a social ecological lens that takes into account variability in individual, interpersonal, organizational, and environmental factors across the life course.  The aims of the PriSSM Center are to:

 

  1. Develop sustainable interdisciplinary, biobehavioral research capacity for symptom self-management research by establishing a sociotechnical infrastructure including centralized research resources
  2. Enable symptom self-management feasibility research that will develop into new programs of research and independent investigator research applications by supporting six pilot project
  3. Advance symptom self-management for Latinos through synergistic research activities informed by a social ecological lens and precision medicine approaches, and
  4. Assess the PriSSM Center activities, impact, and sustainability through formative and summative evaluation.

To achieve the aims of the PriSSM Center, the Administrative and Pilot Projects Cores are complemented by a Precision Medicine Core. Through its cores, the PriSSM Center will use its outstanding institutional resources and proposed research activities to better understand how genetic ancestry, culture, and other factors influence Latino symptom self-management to reduce this scientific knowledge gap for Latinos of diverse heritage.

PriSSM Center Cores 

Administrative Core

Leader: Suzanne Bakken, PhD, RN, FAAN, FACMI, School of Nursing and Department of Biomedical Informatics

Description: the aims of the Administrative Core are to:

  1.  Establish an innovative sociotechnical infrastructure comprising three Cores (Administrative, Pilot Projects, Precision Medicine) that supports the planning, implementation, and dissemination of six pilot projects and other Center activities,
  2. Maintain an organizational structure that ensures the scientific, ethical, regulatory, and financial integrity of the Center and supports the Center’s day-to-day management,
  3. Provide expertise and guidance to pilot project investigators and other Center investigators on multi-faceted engagement and dissemination strategies,
  4. Apply community-engaged approaches to develop and/or refine genomic educational resources and human subjects research documents that meet standards for ethical considerations, Latino cultural appropriateness, and health literacy, and
  5. Implement a formative and summative evaluation plan that includes measurable goals and ongoing assessment of the Center’s progress, impact, and efforts to facilitate sustainability.

The Administrative Core’s approach for achieving these aims is informed by the National Institute of Nursing Research Logic Model for Center Sustainability and takes advantage of the exceptional resources of Columbia University including its Clinical and Translational Science Award-funded services. The Administrative Core leaders, investigators, and staff have substantial expertise in the Center topic and in administrative processes. The Center engagement and dissemination strategies are multi-faceted, incorporate use of social media, and take advantage of our knowledge and experience in translation, implementation, and dissemination in a variety of fields including symptom science, self-management, precision medicine, data science and informatics, community-engaged research, health disparities, and Latino health. The Center evaluation plan is innovative in its use of big data from social media and other big data streams and a variety of data science analytic methods including topic modeling, organizational network analysis, and social media data mining. Together these activities form the foundation for sustainability of the PriSSM Center.

 

Pilot Projects Core

Leaders: Mary W. Bryne, PhD, RN, FAAN, School of Nursing and Department of Anesthesiology, and Walter Bockting, PhD, Department of Psychiatry and School of Nursing

Description: The aims of the Pilot Projects Core are to:

  1. Establish, refine, and maintain the Pilot Projects Core sociotechnical infrastructure for the development, selection, and implementation of six symptom self-management pilot projects,
  2. Enhance the competence of pilot project investigators and other Center investigators in biobehavioral research for symptom self-management,
  3. Provide expertise and guidance to pilot project investigators and other Center investigators on symptom self-management, interdisciplinary collaboration, biobehavioral approaches, study design and implementation, and selection of measures and data sources, and
  4. Support the implementation of the pilot project components of the formative and summative evaluation plan.

The Pilot Projects Core is designed to function in synchrony with the Administrative and Precision Medicine Cores. Together they provide the guidance and resources required by eligible nurse scientists to develop and lead the six proposed pilot projects, to conduct these studies efficiently, and to use the results to yield a foundation for an evolving body of knowledge and programs of biobehavioral research in symptom self-management for Latinos. To address the learning needs of Pilot Project Principal Investigators, the Pilot Projects Core will support the creation of tailored learning plans and identification of relevant training resources for symptom science, precision approaches, cultural awareness of Latino health needs, and translating and disseminating findings to the range of stakeholders represented by investigators, study participants, funders, and the Latino community. These efforts will be enabled by use of infrastructure, including the management and regulatory processes in the Administrative Core, and scientific expertise of PriSSM Center investigators, as well as the Precision Medicine Resources of Columbia’s Clinical and Translational Science Award, the Irving Institute for Clinical and Translational Research. The expertise and coordinated efforts of the Pilot Projects Core will ensure the building of increased biobehavioral research capacity in symptom self-management in a manner consistent with the National Institutes of Health Symptom Science Model. This increase in research capacity will advance the science of symptom self-management for Latinos.

 

Pilot Projects

Adapting a Fatigue Self-Management Intervention for Latinos Living with HIV/AIDS, Michelle Odlum, BSN, EdD, Assistant Professor of Nursing, Pilot Project Principal Investigator

Half of the 1.1 million people living with HIV/AIDS (PLWH) in the U.S. are projected to be 50 years of age and over (≥ 50) mainly due to long-term survivorship. Symptoms associated with HIV long-term survivorship can decrease functional capacity contributing to poor health outcomes.   Fatigue remains troubling, as it is estimated that 33-88 percent of PLWH report its symptoms.  Physiologically, fatigue is evidenced to interfere with antiretroviral therapy (ART) efficacy, leading to ART failure to suppress and sustain viral loads >200 copies/mL. Among the sociodemographic predictors of fatigue are unemployment and low income, indicating its impact in populations of vulnerable PLWH, including Latinos. Although fatigue is known to be a challenge to HIV self-management, few interventions have been developed to improve fatigue-related outcomes.  Adapting the existing Energy Conservation Course (ECC) for Latino PLWH is one promising mechanism to support HIV-related fatigue self-management. To address this critical need, we propose a pilot project informed by the Assessment-Decision-Administration-Production-Topical experts-Integration-Training-Testing (ADAPT-ITT) model that guides systematic adaptation of interventions. The aims of the pilot project are to:

  1. Adapt a fatigue self-management intervention for Latino PLWH ≥ 50. Focus group discussions (N=15 PLWH) will be used to identify cultural and population-specific symptom experiences and fatigue self-management strategies for intervention adaptation.  Feedback from a mock intervention demonstration (N=10 PLWH) and insight from three topic experts will be used to refine the adaptation for intervention implementation.
  2. Pilot test the adapted fatigue self-management intervention, determine fidelity, and examine changes in primary and secondary outcomes. Grounded in symptom science,1 the adapted intervention will be pilot tested with a group of Latino PLWH ≥ 50 (N=30). To assess the short-term intervention feasibility, variables including CDEs (actigraphy sleep patterns, fatigue biomarkers, self-management survey) will be collected (baseline and 3 month follow-up) and analyzed to: 1) determine short-term intervention outcomes and 2) examine changes in fatigue intensity and fatigue-related impairment of functioning over time. 

Fatigue in Elderly Latino Home Health Care Patients with Chronic Disease, JingJing Shang, PhD, RN, Assistant Professor of Nursing, Pilot Project Principal Investigator

 Informed by the National Institutes of Health Symptom Science Model, the objective of this pilot project is to explore the nature of fatigue in elderly Latinos admitted to home health care with a chronic condition. The pilot project will test the feasibility of measuring fatigue in this population and identify potential variability in expression of symptoms of fatigue, behavioral mechanisms, and self-management strategies used by elderly Latinos in a home health care setting. Study findings will be used to further develop our understanding of fatigue and its relationship to genetic, biological, and behavioral characteristics in an underserved population. This will provide a critical foundation for intervention development including those related to symptom self-management. The aims of the pilot project are to:

  1. Develop methods for quantifying the experience of fatigue among elderly Latino patients with a chronic condition in a home healthcare setting to identify potential phenotypes of fatigue in this population,
  2. Examine the association between phenotypic data and ‘omic’ data to identify potential pathways to predict or prevent fatigue and its manifestations, and
  3. Apply visualization strategies to explore an integrated data set that includes biomarkers and ‘omic’ data to discover potential intervention target for future research into self-management of fatigue in elderly Latino home healthcare patients with chronic illness.

Precision Medicine Core

Leaders: Kathleen T. Hickey, EdD, FNP/ANP, RN, FAAN, School of Nursing and Department of Cardiology and Lena Mamykina, PhD, Department of Biomedical Informatics

Description: The aims of the Precision Medicine Core are to:

  1. Establish, refine, and maintain the Precision Medicine Core sociotechnical infrastructure for the collection and/or retrieval, storage, analysis, interpretation, and integration of multiple data sources to support the Center to (a) design and implement six symptom self-management pilot projects and (b) to create and maintain a common data element registry suitable for sharing with the National Institutes of Health and others,
  2. Expand and leverage existing institutional “omics” data resources including the Columbia GENomic Integration with Ehr (GENIE) virtual biobank,
  3. Provide expertise and guidance to Pilot Project investigators and other Center investigators on selection of data sources (genomic and other biomarkers, clinical, symptom self-reports, quantified-self, environmental) and analytic approaches (biostatistics, statistical genetics, data science) for symptom self-management, and
  4. Support the implementation of the data science components (e.g., network analysis, topic modeling) of the formative and summative evaluation plan.

To achieve these aims, the Precision Medicine Core integrates expertise and resources related to variety of data sources (genomic and other biomarkers, clinical, symptom self-reports, quantified-self, environmental) and analytic approaches (biostatistics, statistical genetics, data science). A federated information architecture supports instantiation of the Social Ecological Model with multiple data sources and tools to enable precision in characterization of genotype and phenotype, precision in identification of intervention targets, and precision in intervention. The Precision Medicine Core is innovative in its focus on Latinos who vary significantly in genetic ancestry as well as cultural background and in the use of the Columbia GENIE Virtual Biobank to locate existing “omics” data resources for pilot projects. The proposed precision approaches will advance the science of symptom self-management for Latinos in a manner consistent with the National Institutes of Health Symptom Management Model.

PriSSM Center Faculty

Adriana Arcia, PhD, RN, Assist Professor of Nursing

Suzanne Bakken, PhD, RN, FAAN, FACMI, Alumni Professor of Nursing and Professor of Biomedical Informatics

Walter Bockting, PhD, Professor of Medical Psychology (in Psychiatry and Nursing)

Jean-Marie Bruzzese, PhD, Associate Professor of Developmental Psychology (in Nursing)

Mary W. Bryne, PhD, RN, FAAN, Stone Foundation and Elise D. Fish Professor of Health Care for the Underserved (in Nursing) and Professor of Anesthesiological Sciences (in Anesthesiology) at CUMC

Dawn Dowding, PhD, RN, FAAN, VNSNY Professor of Nursing at Columbia University School of Nursing and the Center for Home Care Policy & Research, Visiting Nursing Service of New York

Maureen George, PhD, RN, AE-C, FAAN, Associate Professor of Nursing at CUMC

Kathleen T. Hickey, EdD, FNP/ANP, RN, FAAN, Associate Professor of Nursing at CUMC

Mady Hornig, MA, MD, Associate Professor of Epidemiology at CUMC 

Haomiao Jia, PhD, Associate Professor of Biostatistics (in Nursing) at CUMC

Jeffrey Kwong, DNP, MPH, ANP-BC, ACRN, AAHIVS, Associate Professor of Nursing at CUMC

Elaine Larson, PhD, RN, FAAN, CIC, Associate Dean of Research and Anna C. Maxwell Professor of Nursing     Research

Lena Mamykina, PhD, Assistant Professor of Biomedical Informatics 

Ruth Masterson Creber, PhD, RN, Associate Research Scientist

Jacqueline Merrill, PhD, MPH, RN, FAAN, Professor of Nursing (in Biomedical Informatics) at CUMC

Michelle Odlum, BSN, EdD, Assistant Professor of Nursing

Nancy Reame, PhD, MSN, FAAN, Special Research Scientist, The Irving Institute for Clinical and Translational Research, and Mary Dickey Lindsay Professor of Nursing, Disease Prevention and Health Promotion (Emerita)

Rebecca Schnall, PhD, RN, Mary Dickey Lindsay Assistant Professor of Nursing, Disease Prevention and Health Promotion

JingJing Shang, PhD, Assistant Professor of Nursing

Arlene Smaldone, PhD, CPNP-PC, CDE, RN Associate Professor of Nursing at CUMC

Patricia W. Stone, PhD, RN, FAAN Centennial Professor in Health Policy

Michael T. Yin, MD, Associate Professor of Medicine 

Sunmoo Yoon, PhD, RN, Associate Research Scientist

 

 

Research Staff

Xiaoyu Che, PhD, Senior Staff Associate and Biostatistician, Center for Infection and Immunity

Patricia Lanzano, Research Laboratory Coordinator 

Niurka Suero-Tejeda, MS, MA, CHES, Project Director

 

External Advisory Board Members

Lynn Doering, PhD, FAAN, Professor of Nursing at University of California, Los Angeles

William L. Holzemer, PhD, RN, FAAN, Professor and Dean of the Rutgers School of Nursing(link is external)

 

Miyong Kim, PhD, RN, FAAN, La Quinta Centennial Endowed Professor and the Associate Vice President for Community Health Engagement, University of Texas at Austin

 

Nilda (Nena) Peragallo Montano, DrPH, RN, FAAN, Dean and Professor at the University of Miami School of Nursing and Health Studies

 

Call for Pilot Project Proposals

The next call for Pilot Project Proposals will be posted in Autumn 2017

Research Projects

 

A Pilot Study to Improve Sleep Quality in Urban High School Students with Asthma

Jean-Marie Bruzzese, PhD

National Institute of Child Health and Human Development

 

A Pragmatic Clinical Trial of MyPEEPS Mobile to Improve HIV Prevention Behaviors in Diverse Adolescent MSM

Rebecca Schnall, PhD, RN

National Institute of Minority Health and Health Disparities

 

Advancing Heart Failure Symptom Science and Fostering Self-Management Using Novel mHealth Applications Ruth Masterson Creber, PhD, MPH, RN

National Institute of Nursing Research

 

Elder LGBT Interprofessional Collaborative Care (E-LINC) Program

Jeffrey Kwong, DNP, MPH, ANP-BC, ACRN, AAHIVS

Health Services and Resources Administration

 

HIT for Facilitating Problem Solving in Diabetes Management

Lena Mamykina, PhD, George Hripcsak, MD (MPIs)

National Institute of Diabetes and Digestive and Kidney Diseases

 

Identity Development, Risk and Resilience among Gender Diverse Populations

Walter Bockting, PhD

National Institute for Minority Health and Health Disparities

 

Improving Nutritional Literacy and Decision Making with Learner-Centered Crowdsourcing

Lena Mamykina, PhD

National Science Foundation

 

iPhone Helping Evaluate Atrial Fibrillation Rhythm through Technology (iHEART)

Kathleen T. Hickey, EdD, FNP/ANP, RN, FAAN

National Institute of Nursing Research

 

Making Sense of Information in Online Discussion Boards with Novel Social Computing Platforms

Lena Mamykina, PhD

National Science Foundation

 

My Clinic: Integrating mHealth Medication Reconciliation and Symptom Reporting for Patient-centered Care

Ruth Masterson Creber, PhD, MPH, RN

Heart Failure Society of America

 

New York City Hispanic Dementia Caregiver Research Program (NHiRP)

Suzanne Bakken, PhD, RN, FAAN, FACMI, Jose Luchsinger, MD, Mary Mittelman, DrPH (MPIs)

National Institute of Nursing Research

 

New York City Hispanic Dementia Caregiver Research Program (NHiRP) (Diversity Supplement)

Suzanne Bakken, PhD, RN, FAAN, FACMI, Jose Luchsinger, MD, Mary Mittelman, DrPH

National Institute of Nursing Research

 

Promoting Improved Diabetes Self-Management and Care with Continuous Self-Monitoring and Novel Data Science Methods

Lena Mamykina, PhD

Robert Wood Johnson Foundation

 

Reducing Health Disparities Through Informatics

Suzanne Bakken, PhD, RN, FAAN, FACMI

National Institute of Nursing Research

 

Self-care Decision-making: Feasibility of the BREATHE Asthma Intervention Trial

Maureen George, PhD, RN, AE-C, FAAN

National Institute of Nursing Research

 

The Wise App Trial for Improving Health Outcomes in PLWH

Rebecca Schnall, PhD, RN

Agency for Healthcare Research and Quality

 

Understanding the Interaction between HIV and Health Outcomes in a New York City Vulnerable Population of Women Living with HIV/AIDS

Michelle Odlum, BSN, EdD

Columbia University Provost Diversity Award

 

Use of mHealth Technology for Supporting Symptom Management in Underserved Persons Living with HIV Rebecca Schnall, PhD, RN

Agency for Healthcare Research and Quality

 

Video Information Provider for HIV-Associated Non-AIDS (VIP-HANA) Symptoms

Rebecca Schnall, PhD, RN

National Institute of Nursing Research

 

Video Information Provider for HIV-Associated Non-AIDS (VIP-HANA) Symptoms [Women's Supplement]

Rebecca Schnall, PhD, RN

National Institute of Nursing Research