Background
Activity and disability
What is function?
Why are activity and participation important health indicators?
How have activity and participation been measured?
Definitions and examples of terms
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Function – “a dynamic interaction between a person’s health condition, environmental factors, and personal factors” [3]. This is an umbrella term including cellular and tissue function, organ and body structure function, and whole person function.
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Activity and participation – the outcome of the interaction between an individual (with some health condition) and their environment, including specific activities and participation, as well as personal contextual factors; also referred to as whole person function. This encompasses basic willful actions, specific tasks, organized activities, and role participation [26, 29]. Examples include walking (including the environment being walked on, anything used to assist in performing the activity, etc), taking public transportation (which combines walking with other activities such as identifying a destination, sitting, etc), or participating in work.
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Activity report – a recorded observation of activity and/or participation, which identifies relevant components of a specific activity or participation outcome and records them in structured or unstructured data. Examples include, “Patient walked one lap in the hallway,” or “Sue reports to work every day at 9 and works with no limitations until 5pm.” Prior work has referred to information samples of this type variously as “functioning information” [30], “functional status terms” [31], “functional status information” [32], “functional health status” [33], and other terms. However, prior studies have not specifically distinguished information about activity and participation from information about other elements of function; thus, we adopt the term “activity report” to clearly distinguish activity and participation information from other types of health information.
The information gap: What’s missing?
How can information on activity and participation be captured?
How can information on activity and participation be analyzed?
How has NLP been used in clinical care and research?
How has unstructured activity and participation information been analyzed?
What is needed to improve analysis of activity and participation information?
Approach: | Common datasets for research | Shared understanding of analytic tasks | Expert knowledge of activity and participation | Records of activity and participation |
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Analytic Needs: | • Volume: sufficient data to support modern methods of analysis. • Representation: data must be widely representative. • Annotation: gold standard descriptions of activity reports for benchmarking and comparison. | • Problem definitions: common definitions of analytic tasks and evaluation. • Problem sharing: information exchange in the community. • Interdisciplinary collaboration: input from clinical and analytic stakeholders. | • Standardized information structure: clear standards of information components and their relationships. • Robust sources of information: capture variation and common usage of language and data. | • Recorded observations: activity reports explicitly recorded during patient encounters. |
Challenges for Activity and Participation: | • Records from general encounters often have few activity reports. • Activity reports are expressed in diverse language and in varying levels of detail. • No common datasets with activity and participation information available for community research. | • Prior NLP work on activity and participation information has been highly specific and does not generalize easily. • Requires both data science and clinical expertise to effectively adapt existing methods to data that contain activity reports. | • Existing resources lack sufficient structure to accurately represent activity and participation information in practice. • Current vocabularies have poor coverage of activity and participation concepts and terms. | • Multiple competing standards exist for documenting information in rehabilitation medicine. • Standards are not widely adopted outside of rehab for standard clinical care. |
Action: | • Develop and publish standards for annotating activity reports. • Develop resources for research that can be shared through regulatory frameworks. | • Identify and define common research problems and applications for processing activity reports. | • Develop a clinically-informed ontology for activity and participation information, along with representative terminologies from multiple sources. | • Establish common standards for observing and documenting activity reports in patient encounters. |
Short-term Goals: | • Develop and publish annotation schema for 1–2 specific aspects of activity and participation. Make small sets of annotated data available through existing data sharing mechanisms. | • Establish shared tasks for extracting particular activity reports from an annotated dataset. | • Develop mappings across existing conceptual frameworks, such as ICF and SNOMED. | • Identify minimal interventions that can capture high-impact activity and participation status. |