PACIO Personal Functioning and Engagement Implementation Guide, published by HL7 International / Patient Care. This guide is not an authorized publication; it is the continuous build for version 1.9.0 built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/HL7/fhir-pacio-pfe/ and changes regularly. See the Directory of published versions

Structured Data Capture

In many cases, clinicians use formal, structured instruments to capture details on a patient’s functioning and engagement. These include:

• long forms required by payers that cover a broad range of domains, (e.g., the Centers for Medicare & Medicaid Services (CMS) Minimum Data Set (MDS) 3.0 Resident Assessment Instrument (RAI).)
• shorter assessments that target specific areas such as the Montreal Cognitive Assessment (MoCA) or the swallowing panel that is part of the American Speech-Language-Hearing Association (ASHA) National Outcomes Measurement System (NOMS) program.

The Structured Data Capture FHIR IG provides a methodology for capturing this information within FHIR both in its raw and in its discrete structured form. This page provides guidance on how tools like the SDC Questionnaire and US Core QuestionnaireResponse resources may be used with this IG.

Codified Representation

Standardized instruments fall into two broad categories based on use of standardized code systems.

1. Fully Codified – These instruments have standardized terminology associated with them, meaning the entire instrument can be modelled.
2. Partially Codified – These instruments generally have standardized question and answer pairs and a code to describe the instrument and total score. However, critical meta data or other information may only be found on the assessment itself. For example, the MoCA has codes for only the summary score and not the component questions.

Representative examples of each of these categories are provided in the following sections to guide implementers.

Fully Codified Assessments

The following are examples of fully codified assessments. QuestionnaireResponse representations of these assessments can be fully mapped to structured observation resources defined in this IG.

Tool	LOINC Codes
ASHA NOMS Functional Communication Measure - Swallowing panel	99852-6 NOMS Functional Communication Measure (FCM): Swallowing    99853-4 What modified diet is recommended for the individual to swallow solids safely?    99854-2 What modified liquid is recommended for the individual to swallow safely?    99855-9 What percentage of the individual's daily diet is delivered through non-oral means in order to maintain adequate nutrition and hydration?    99856-7 How often does the individual exhibit difficulties with oral containment or secretion management?    99857-5 How often does the individual require supervision/assistance at meal time due to swallowing safety?    99858-3 Functional Communication Measure - Swallowing score [ASHA NOMS]
Brief Interview for Mental Status (BIMS) (QuestionnaireResponse)	52491-8 Brief Interview for Mental Status (example)    52731-7 Repetition of Three Words. Number of words repeated after first attempt (example)    54510-3 Temporal Orientation (orientation to year, month, and day) (example)      52732-5 Able to report correct year (example)      52733-3 Able to report correct month (example)      54609-3 Able to report correct day of the week (example)    52493-4 Recall (example)      52735-8 Able to recall "sock" (example)      52736-6 Able to recall "blue" (example)      52737-4 Able to recall "bed" (example)    54614-3 BIMS Summary Score (example)
Self-care subset of MDS v3.0 - RAI v1.17.1, 1.17.2 - Interim Payment Assessment (IPA) item set [CMS Assessment]	90540-6 Self-Care - Interim Performance    95019-6 Eating    95018-8 Oral hygiene    95017-0 Toileting hygiene

Partially Codified Assessments

Not all assessment tools have standardized codes for all of their questions. For example. the MoCA has a coded representation for the summary score, not the individual questions. In cases like this, QuestionnaireResponses may not be fully mapped to structured observations, meaning that some information remains only in the QuestionnaireResponse instance, or on the paper form.

Montreal Cognitive Assessment (MoCA) (QuestionnaireResponse)

72133-2 Montreal Cognitive Assessment [MoCA] (example)    72172-0 Total score [MoCA] (example)

Observation Structure

When representing formal assessments with complex structures as FHIR Observations, each panel and question SHALL be mapped to an individual Observation instance, with panels represented using the collection profile and questions represented using the single observation profile. Two kinds of links between the observation instances capture important relationships:

• Parent-child links: parent observations SHALL contain references to each child observation instance, including nested panels and specific questions using the hasMember element.
• Derivation links: observations derived from other questions, such as summary scores, SHOULD point to the observations that the result is derived from using the derivedFrom element. Note that these derivation links appear in this element alongside references to any QuestionnaireResponse that the set of Observations is generated from. The two uses of the derivedFrom element can be distinguised by the resource type: score derivations links point to Observation instances, while the reference to the complete instrument response will point to a QuestionnaireResponse.

Example: BIMS

This diagram illustrates the required and suggested structure and linkages using the Brief Interview for Mental Status (BIMS) as an example. Note that this structure may be embedded within a larger formal assessment, such as an MDS Assessment described above.

Following the structure of the LOINC codes representing the BIMS, the following structures and links are involved:

• Panel codes, both the top-level code (52491-8), and inner nodes (e.g., 54510-3), are represented using the collection profile with links to sub panels (e.g., panel 54510-3 from top level-code 52491-8) and individual questions (e.g., question 52732-5 from inner node 54510-3) in the hasMember element.
• Individual questions (e.g., 52732-5) represented using the single observation profile. The summary score question (54614-3) contains links in the derivedFrom element to the individual questions used to calculate the score (e.g., 52732-5).
• Each observation instance links back to the QuestionnaireResponse representing the whole BIMS Assessment in the derivedFrom element.