haau3 FHIR Implementation Guide (HFIG) - Local Development build (v1.0.0) built by the FHIR (HL7® FHIR® Standard) Build Tools. See the Directory of published versions

Use Cases

Background

One of the core use cases for Patient Facing Apps is Kill the Clipboard. It's aimed at eliminating manual check-in forms and fragmented data collection. In the April 2026 MVP, this requirement was defined using an initial KTC Patient-Shared Health Documents via SMART Health Links specification that largely conformed to sharing data that represented available USCDI data or a summary of elements specified by the International Patient Summary (IPS). As we're progressing towards the July 2026 milestone, discussions around additional requirements have surfaced that have been defined in the newer KTC Patient-Shared Health Documents via SMART Health Links Specification that includes the concept of a patient story (both PDF and discrete FHIR resources), but also some wording that describes an optional workflow for Ahead-of-Time Check-In. That optional workflow has led to discussions around strengthening the shared FHIR bundle to align more closely with the IPS specification and the usage of questionnaires to collect data.

Purpose

This page is intended to convey the following:

• How we could share completed questionnaires using the existing KTC Bundle
• Examples of standard questionnaires that we could leverage
• Demonstrate how we could incrementally move towards an ecosystem where Patient Facing Apps can facilitate the sharing of completed questionnaires

Out of scope

This page intentionally does not address the following:

• Difference between IPS and Questionnaires
• Using questionnaires in the optional workflow for ahead-of-time check in

Questionnaires and Structured Data Capture

Questionnaires are ubiquitous in healthcare and are often organization and use-case specific. Some flavors of questionnaires include, but are not limited to:

• Quuestionnaires that ask common questions about a patient (e.g. demographics, conditions, meds, labs, medical history)
• Questionnaires that ask are tailored towards a specific use case/appointment (e.g. pre-surgical questions, pre-examination questions)
• Questionnaires that are validated instruments (e.g. GAD-7, PROMIS-10)
• Questionnaires that are clinician-facing (e.g. CTCAE), but also patient-facing (PRO-CTCAE)
• Questionnaires that are collected electronically. A common example of these with a very specific definition are electronically patient reported outcomes (ePROs).
• Questionnaires that have restricted terms and usage (e.g. PHQ-9)

Examples of Candidate Questionnaires

To minimize restrictions, it'd be ideal to use questionnaires that have flexible terms and usage and avoiding any that do (e.g. PHQ-9, GAD-7, PROMIS-10)

Not necessarily a recommendation, but some examples of some that may be considered include two instruments that have been vetted by the Gravity Project that are described in the Social Risk Terminology Value Sets as many are readily accessible in LOINC and the NLM's LHC FHIR Tools. Two examples enumerated in this FHIR IG include:

• eHealth Literacy Scale
• 6-item Transportation Security Index

Questionnaire Copyright

A programmatic way that can be used to filter for candidates is to use the APIs from LOINC and NLM to determine if there are any copyright comments populated for a given standard questionnaire. Note This should NOT be considered a definitive answer, but rather a way to specifically filter on candidate questionnaires that could be considered.

LOINC FHIR Terminology Service

Query a LOINC term for copyright-related properties:

GET https://fhir.loinc.org/CodeSystem/$lookup?system=http://loinc.org&code={LOINC_CODE}&property=EXTERNAL_COPYRIGHT_NOTICE&property=EXTERNAL_COPYRIGHT_LINK

Example:

GET https://fhir.loinc.org/CodeSystem/$lookup?system=http://loinc.org&code=69737-5&property=EXTERNAL_COPYRIGHT_NOTICE&property=EXTERNAL_COPYRIGHT_LINK

Expected response excerpt:

{
  "name": "property",
  "part": [
    {
      "name": "code",
      "valueCode": "EXTERNAL_COPYRIGHT_NOTICE"
    },
    {
      "name": "value",
      "valueString": "Copyright © Pfizer Inc..."
    }
  ]
}

NLM Clinical Tables API

Query the same copyright metadata using the NLM Clinical Tables API:

GET https://clinicaltables.nlm.nih.gov/api/loinc_items/v3/search?terms={LOINC_CODE}&sf=LOINC_NUM&df=LOINC_NUM,LONG_COMMON_NAME,isCopyrighted,containsCopyrighted&ef=EXTERNAL_COPYRIGHT_NOTICE,EXTERNAL_COPYRIGHT_LINK

Example:

GET https://clinicaltables.nlm.nih.gov/api/loinc_items/v3/search?terms=69737-5&sf=LOINC_NUM&df=LOINC_NUM,LONG_COMMON_NAME,isCopyrighted,containsCopyrighted&ef=EXTERNAL_COPYRIGHT_NOTICE,EXTERNAL_COPYRIGHT_LINK

Expected response excerpt:

{
  "EXTERNAL_COPYRIGHT_NOTICE": [
    "Copyright © Pfizer Inc..."
  ],
  "EXTERNAL_COPYRIGHT_LINK": [
    "Pfizer"
  ]
}

Examples