Article Figures & Data
Figures
- Figure 1
Logic model guiding the multiple chronic conditions in context initiative.
AHRQ = Agency for Healthcare Research and Quality; DHHS = Department of Health and Human Services; NIH = National Institutes of Health.
- Figure 2
Partnerships for Collaborative Action
Tables
Contextual Category Subcategory Examples Biological Organ system
Cellular mechanismsGenetic and physiological mechanisms that create interaction effects between diseases and treatments
Basic understanding of multimorbidityGenomics Person Personal goals and preferences Goals and preferences for process and outcomes of care
Personal hopes and expectations and life goals (short and long term)
Concerns about careMedical characteristics Functional status
Degree of symptom distress—especially pain
Mental health, cognition, mood
Complexity of conditions and care regimen
Specific dominant conditions
Capacity for self-careCultural factors Language
Race, ethnicity, cultural background
Personal preferences (eg, religiosity, privacy)
Ability to advocate for selfResources Financial resources
Insurance benefits
Housing, living situation
Transportation and access to care
Educational attainment, literacy
Health literacy and numeracy
Social isolation, connectedness to others, communication
Presence of family, unpaid caregiver
Peer supportFamily Capacity of family to provide care Ability to provide care and personal services
Emotional support
Proximity and availability
Financial resources
Ability to advocate for patient within health care system
Legal considerationsSocial and cultural context of family Family dynamics (including potential for abuse, neglect)
Cohesion and ability to make decisions as a unit
Family’s connection to the community and health care system
Preferences for care and caregiving, including location for caregivingCommunity Physical characteristics of the community Climate
Urban, rural, suburban
Connectivity of community—eg, broadband, telephone, other resources
Transportation system (including accessibility)
Safety of community
Potential for recreation
Physical infrastructure and built environment
Healthy food, air, and water qualityHealth care infrastructure Link between community resources and the health care system
Health care marketplace
Available clinicians
Implementation of health care policy
Availability and skills of community health workersDemographics Socioeconomic status of community
Diversity (race, ethnicity, sex, age, culture)
EmploymentSocial culture Civic culture (eg, organized volunteer groups)
Employment for individuals with multiple chronic conditions
Acceptance of diversity, openness to interventions etc
Social networking, social normsHealth care system Delivery Continuity of care
Access to mental health care
What is measured and incentivized
Accessibility of system: responsiveness, ease of communication, patient centeredness
Integration, fragmentation, structure of health care systemResources Financing, sources of revenue, reimbursement structure
Physical infrastructure
Extent of and allocation of resourcesCommunications and information technology Information systems
Patient and caregiver access to information systems and information
Information flow—between whom?Workforce Supply—professional and nonprofessional
Abilities and skills
How systems use care teams and who is on themEducation and training Scope of practice
Match between training and needs
Ongoing workforce education and trainingPolicy Financial What is paid for, and what is not paid for?
By whom? To whom? For what? Who is eligible?
Benefit designQuality What is measured? What are the outcomes that matter?
Which measures are imposed in which settings?Legal, regulatory Scope of practice, licensing laws
Privacy protection
Health care workforce protections, labor lawsPolitical environment Local and policy effects Economic environment Effects on community, health care system Media environment What is communicated? To whom? Developing contextualized knowledge to support health and person-driven, goal-directed care for persons with MCC How can the interacting effects of MCC on health be understood? What are the mechanisms of interaction among relevant contextual factors and how do they affect health and health care? What are the additive or multiplicative effects or burdens of living with or caring for multiple chronic illnesses? What combinations of treatments, services, technologies, and resources help individuals reach their goals efficiently, effectively, and safely? How can patients be supported in their self-management? What are the diverse factors affecting personal goal setting and goal attainment? What are practical and effective models for integrating mental and physical health? How can effective models of rapid cycle knowledge generation be developed and implemented? What can be learned from international comparisons? What outcomes and measures are most relevant for persons with MCC and their caregivers? What generalizable interventions are effective across different combinations of MCC? What are the causes, duration, and severity of MCC in the population, what are the resulting disabilities, and which interacting aspects of context are most important for treatment effectiveness? Achieving a culture, system, technology, and communities that facilitate person-driven, goal-directed care and self-management that improves health What approaches create a culture that supports the person-driven, goal-directed management of MCC? What supportive systems and technologies are needed to improve the health and health care of persons with MCC? How can the needed workforce, patient, family capacity, and peer-support be enhanced? How do multidirectional linkages that include community resources affect the health and health care of persons with MCC? How can we provide the needed training, organizational change, and team building? What are effect of incentives through policy and reimbursement systems? -
MCC = multiple chronic conditions.
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1. Current challenges There is not a common lexicon among stakeholders Contextual factors are dynamic, fluid, interrelated, and vary according to perspective Because contextual factors interact in dynamic ways, it is important to measure them from conceptualization to completion of the research study, and to have analytic techniques that do not rely on assumptions of linearity To be relevant, methods may need to be combined, modified, or developed There is tension between gathering data and burden to participants 2. Suggestions for relevant knowledge generation Research studies involving MCC should always consider contextual factors Contextualized MCC research requires methods that are: Participatory (engage multiple perspectives and relevant partners) Flexible (data collection, intervention delivery, outcomes ascertainment) Both quantitative and qualitative (mixed methods) Multilevel (from person to place to policy) Sufficiently granular to address what works for whom in what situation Conducive to ongoing measurement from diverse data sources Generative of ongoing learning In all aspects of research from conceptualization to dissemination and implementation: Persons with MCC and their family and friend caregivers should participate Researchers should effectively engage communities Researchers should ensure that shared language is developed and used among stakeholders Research funders and publishers’ policies should require inclusion of contextual factors in all research, unless exclusion is justified Context should be measured and analyzed at multiple levels To reduce participant burden (eg, health care system, individuals, providers of health care), existing data (eg, EHR, marketing research, and public health data) should be mined when possible and commensurate compensation provided Methods that are most appropriate to the research question should be selected, rather than having the methods drive the question. Exploration of methods from multiple disciplines (eg, occupational therapy, engineering, systems science, modeling) is encouraged Development and adaptation of methods that are sensitive to the emergent properties of complex systems is warranted -
EHR = electronic health record; MCC = multiple chronic conditions.
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Key collaborative partners Research enterprise (public and private, researchers and funders) Health care providers, including those providing home care Community-based support Patients and their family and friend caregivers Policy makers and payers An array of other essential partners (eg, government public health, foundations) Domains of engagement for key partners Formulating research questions and methods that address context Reporting and interpreting research findings with greater attention to context Disseminating findings and strengthening the evidence base in prevention, management, and care for persons with MCC Translating findings into plain language in the patient’s context Sustaining funding, advocacy, and other support for context in research and practice Ongoing measurement and monitoring of progress and impact Steps for building and sustaining collaborative partnership Enumerate specific strategic partners Establish common and compelling lexicons and stories Engage partners Foster innovation on context-informed research (eg, encourage funding announcements, FDA, IRBs to emphasize context-informed research) Foster incorporation of context in practice (eg, cross-cutting clinical guidelines, performance measures, and patient-caregiver self-care management practice) Continue reinforcing actions by partners Measure and monitor effects and modulate actions -
FDA = Federal Drug Administration; IRB = institutional review board; MCC = multiple chronic conditions.
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Supplemental Appendix
Patient Handout
Files in this Data Supplement:
- Supplemental data: Appendix - PDF file
The Article in Brief
Understanding the Context of Health for Persons With Multiple Chronic Conditions: Moving From What is the Matter to What Matters
Kurt C. Stange , and colleagues
Background More than one in four Americans lives with more than one ongoing health condition. Despite the growing prevalence and cost of multiple chronic conditions, many current health care and research approaches are focused on single diseases. This report synthesizes insights from 45 experts, including people with multiple chronic conditions, family and friend caregivers, researchers, policy makers, and funders, on how to bring context into research efforts to improve the health of people with multiple chronic conditions.
What This Study Found To generate new knowledge to improve the health of people with multiple chronic conditions, consistent attention to contextual factors is needed. Efforts must consider complementary perspectives across multiple levels, including public policy, community, health care systems, family and person as well as the cellular and molecular levels where most research is currently focused. This shift will require new partnerships between researchers, clinicians, patients, caregivers, policy makers and other stakeholders, and dynamic research methods that are participatory, flexible, multilevel, longitudinal and mixed-method.
Implications
- Developing an evidence base that includes context will ultimately lead to more integrated, effective, high value health care that is responsive to individual needs, preferences, and desires.
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