Elizabeth A Bayliss1, Denise E Bonds, Cynthia M Boyd, Melinda M Davis, Bruce Finke, Michael H Fox, Russell E Glasgow, Richard A Goodman, Suzanne Heurtin-Roberts, Sue Lachenmayr, Cristin Lind, Elizabeth A Madigan, David S Meyers, Suzanne Mintz, Wendy J Nilsen, Sally Okun, Sarah Ruiz, Marcel E Salive, Kurt C Stange. 1. Kaiser Permanente, Denver, CO (Bayliss); National Heart, Lung and Blood Institute, Bethesda, MD (Bonds); Johns Hopkins University School of Medicine and Bloomberg School of Public Health, Baltimore, MD (Boyd); Oregon Health & Sciences University, Portland, OR (Davis); Indian Health Services, Nashville, TN, and Baltimore, MD (Finke); Center for Disease Control and Prevention, Atlanta, GA (Fox); National Cancer Institute, National Institutes of Health, Bethesda, MD (Glasgow, Heurtin-Roberts); University of Colorado School of Medicine, Denver, CO (Glasgow); Office of the Assistant Secretary for Health, Department of Health and Human Services and Center for Disease Control and Prevention, Atlanta, GA (Goodman); National Council on Aging, Washington, DC (Lachenmayr, Ruiz); Patient/Caregiver Advocate, Boston, MA (Lind); Karolinska Institute, Stockholm, Sweden (Lind); Case Western Reserve, Cleveland, OH (Madigan, Stange); Agency for Healthcare Research and Quality, Rockville, MD (Meyers); Family Caregiver Advocacy, Kensington, MD (Mintz); Office of Behavioral and Social Sciences Research, National Institutes of Health, Bethesda, MD (Nilsen); PatientsLikeMe, Cambridge, MA (Okun); University of Chicago, Chicago, IL (Ruiz); National Institute on Aging, Bethesda, MD (Salive).
Abstract
PURPOSE: An isolated focus on 1 disease at a time is insufficient to generate the scientific evidence needed to improve the health of persons living with more than 1 chronic condition. This article explores how to bring context into research efforts to improve the health of persons living with multiple chronic conditions (MCC). METHODS: Forty-five experts, including persons with MCC, family and friend caregivers, researchers, policy makers, funders, and clinicians met to critically consider 4 aspects of incorporating context into research on MCC: key contextual factors, needed research, essential research methods for understanding important contextual factors, and necessary partnerships for catalyzing collaborative action in conducting and applying research. RESULTS: Key contextual factors involve complementary perspectives across multiple levels: public policy, community, health care systems, family, and person, as well as the cellular and molecular levels where most research currently is focused. Needed research involves moving from a disease focus toward a person-driven, goal-directed research agenda. Relevant research methods are participatory, flexible, multilevel, quantitative and qualitative, conducive to longitudinal dynamic measurement from diverse data sources, sufficiently detailed to consider what works for whom in which situation, and generative of ongoing communities of learning, living and practice. Important partnerships for collaborative action include cooperation among members of the research enterprise, health care providers, community-based support, persons with MCC and their family and friend caregivers, policy makers, and payers, including government, public health, philanthropic organizations, and the business community. CONCLUSION: Consistent attention to contextual factors is needed to enhance health research for persons with MCC. Rigorous, integrated, participatory, multimethod approaches to generate new knowledge and diverse partnerships can be used to increase the relevance of research to make health care more sustainable, safe, equitable and effective, to reduce suffering, and to improve quality of life.
PURPOSE: An isolated focus on 1 disease at a time is insufficient to generate the scientific evidence needed to improve the health of persons living with more than 1 chronic condition. This article explores how to bring context into research efforts to improve the health of persons living with multiple chronic conditions (MCC). METHODS: Forty-five experts, including persons with MCC, family and friend caregivers, researchers, policy makers, funders, and clinicians met to critically consider 4 aspects of incorporating context into research on MCC: key contextual factors, needed research, essential research methods for understanding important contextual factors, and necessary partnerships for catalyzing collaborative action in conducting and applying research. RESULTS: Key contextual factors involve complementary perspectives across multiple levels: public policy, community, health care systems, family, and person, as well as the cellular and molecular levels where most research currently is focused. Needed research involves moving from a disease focus toward a person-driven, goal-directed research agenda. Relevant research methods are participatory, flexible, multilevel, quantitative and qualitative, conducive to longitudinal dynamic measurement from diverse data sources, sufficiently detailed to consider what works for whom in which situation, and generative of ongoing communities of learning, living and practice. Important partnerships for collaborative action include cooperation among members of the research enterprise, health care providers, community-based support, persons with MCC and their family and friend caregivers, policy makers, and payers, including government, public health, philanthropic organizations, and the business community. CONCLUSION: Consistent attention to contextual factors is needed to enhance health research for persons with MCC. Rigorous, integrated, participatory, multimethod approaches to generate new knowledge and diverse partnerships can be used to increase the relevance of research to make health care more sustainable, safe, equitable and effective, to reduce suffering, and to improve quality of life.
Entities:
Keywords:
chronic illness; health services research; multiple chronic conditions
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