| Submitted By: Rachel Eager / New York eHealth Collaborative | |
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| Data Element Information | |
| Use Case Description(s) | |
| Use Case Description | An advance directive is only used when a person is in danger of dying and needs certain emergency or special measures to keep a person alive but the person is unable to make these decisions themselves. (2). Currently this may be sent as a PDF or faxed to a hospital or palliative care center from a designated caregiver or other personnel. However this may be burdensome and cause more costly steps to the care process rather than having the directive located within a data field in the EMR. 2. https://www.nia.nih.gov/health/advance-care-planning-health-care-directives#:~:text=Always%20remember%3A%20an%20advance%20directive,wishes%20about%20medical%20treatment%20known. |
| Estimated number of stakeholders capturing, accessing using or exchanging | This is a level 1 element since most people may have an advance directive but it may not be used in a healthcare setting unless the patent is in danger of dying and unable to make this decision for themselves. |
| Use Case Description | A second use case is sending advanced directives to the health information exchange and allowing this data to be exchangeable for better care coordination amongst the person’s care team. In emergency cases where a patient may not expect to need an advanced directive this allows the hospital or other care providers to easily access this through a portal or through bi-directional exchange into their EMR. This would allow for the patient’s wishes to be met in an emergency. |
| Estimated number of stakeholders capturing, accessing using or exchanging | This use case could pertain to any patient that experiences an emergency situation and their advanced directive is needed to be accessed. The exchange of this data elements would mainly be needed between a primary care and a hospital in cases such as this one. |
| Healthcare Aims |
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| Maturity of Use and Technical Specifications for Data Element | |
| Applicable Standard(s) | LOINC https://loinc.org/42348-3/ |
| Additional Specifications | https://build.fhir.org/ig/HL7/cda-ccda-2.2/StructureDefinition-2.16.840.1.113883.10.20.22.2.21.html |
| Current Use | In limited use in production environments |
| Supporting Artifacts |
Advanced directives are in limited production use across the Statewide Health Information Network for New York. In one Qualified Entity, Hixny, there is a dedicated field that allows providers to note the existence and content of directives. HEALTHeLINK also has a dedicated tab to show whether the document exists and when it was created but currently does not display the content of the advanced directive. HEALTHeLINK is looking for innovative ways to receive these documents and make them available on demand in applicable settings and situations for better, real time care. Other health information exchanges are also integrating advance directives into their networks. Arizona provides this information to end-of-life care teams across the state and Quality Health Network Health Information Exchange is providing this information to hospice teams participating in the network. Therefore this element is currently being used in a limited capacity to better exchange a patient’s wishes. https://hixny.org/pulling-the-pieces-together/ https://ehrintelligence.com/news/az-hie-integrates-advance-directives-to-inform-clinical-decision-making https://qualityhealthnetwork.org/hie-improves-access-to-hospice-care-advance-directives/ |
| Number of organizations/individuals with which this data element has been electronically exchanged | 4 |
| Supporting Artifacts |
Although the exact number of outside entities receiving this data is unknown. Advanced directives are important to be exchanged throughout the healthcare system for those experiencing emergencies or a serious illness. Potential outside entities include hospitals, skilled nursing facilities, primary care offices, palliative care and hospice. Currently health information exchange networks are sending this data to providers involved in a person’s end-of-life care and hospice providers. https://ehrintelligence.com/news/az-hie-integrates-advance-directives-to-inform-clinical-decision-making https://qualityhealthnetwork.org/hie-improves-access-to-hospice-care-advance-directives/ |
| Potential Challenges | |
| Restrictions on Standardization (e.g. proprietary code) | None |
| Restrictions on Use (e.g. licensing, user fees) | None |
| Privacy and Security Concerns | An advanced directive is very sensitive patient information that should be treated as such. It is important patient information that should be protected and has important legal implications in a person’s end of life care. |
| Estimate of Overall Burden | Since advanced directives tend to be a paper document and only occasionally coded in LOINC, this may be difficult for some of this data to be transferred to an EMR. In addition it would be important for a primary care provider or other care team member to properly record this data for others to be able to access it. This may be an extra process for these providers but the overall impact and having this data on hand in emergency situations can not only help to adhere to the patient’s wishes but also save providers from doing costly tests and unnecessary procedures. |
| ONC Evaluation Details Each submitted Data Element has been evaluated based on the following 4 criteria. The overall Level classification is a composite of the maturity based on these individual criteria. This information can be used to identify areas that require additional work to raise the overall classification level and consideration for inclusion in future versions of USCDI |
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| Maturity – Standards/Technical Specifications | Level 1/2 - Must be represented by a vocabulary standard or an element of a published technical specification |
| Maturity - Current Use | Level 1 - Used in limited production environments, 1 or 2 different systems |
| Maturity - Current Exchange | Level 1 - Demonstrates exchange between 2 or 3 organizations with different EHR/HIT systems |
| Breadth of Applicability - # Stakeholders Impacted | Level 2 - Used by a majority of patients, providers or events requiring its use |
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