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The healthcare and social services communities both recognize the importance of Social Determinants of Health (SDOH) factors in affecting the well-being of the person as well as the significant impact on healthcare outcomes and costs. The Human Social Services (HSS) Working Group is proposing to enhance the current FHIR Standard to be enable a Person-Centric View into FHIR Resources.

The scope of the Person-Centric View Project has two objectives. The first objective is to provide the ability of the subject of FHIR resources be a person and ensuring relationships of the person can be captured and used. The second objective is to ensure that any recommendations are backwards compatible with the existing FHIR R5 published standard.

There are many studies showing the significance of Social Determinants of Health (SDOH) on the well-being of outcomes of the individual. A HL7 published report …. 40%. Extending FHIR to allow a Person-Centric View for public organizations, non-profit organizations, private organizations,  vendors, and the professionals seeking, providing, and managing social, cultural, and non-clinical services will expand the collective knowledge of the HL7 Community.  This new foundation of a Patient-Centric and a Person-Centric View should enable both communities to work together to produce better outcomes for the individual.

The second scoping objective of the Project is also focused on the concept of extending FHIR from a more technical perspective. The objective is to that any recommendations for enhancements to FHIR will be backwards compatible with FHIR R5 and any applications written to that version of the standard. The Patient-Centric View will be retained and not modified. The Person Centric View Project will focus on the subject data element in FHIR Resources. From that perspective, additional recommendations may be made for expanding valuesets as well as any necessary Resource rules.

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There are multiple reasons and benefits for enhancing FHIR to provide both a Person-Centric View and a Patient-Centric View.

1. Human Communication - Ability to communicate between healthcare professionals, care givers, providers of social and non-clinical providers, and between these non-technical professionals and the technical teams supporting their efforts is limited without the ability to express conditions, goals, observations, findings, and other facts and concerns without a Person-Centric View is limiting.

• Semantics matter. Communication between two different groups in different domains is difficult enough. If one group only can have the subject of the focus of a conversation be the concept of a patient and the other group only can have or understand the focus of a conversation be the concept of a person then communication between the two can cause issues.
• Privacy concerns. There are some situations where the subject may not want to be or should be identified as a Patient. FHIR requires to the subject to be a Patient. It is also true that when a person has been referred to as a patient, privacy concerns may limit communications.

2. System Communication / Interoperability – Ability for one computer system to exchange electronic information with another computer system.

• As a rule, many social service provider organizations such as schools, food banks, housing organizations, and child welfare organizations are not FHIR enabled and they may never be FHIR enabled. This is also true for governmental organizations supporting these organizations. The need to exchange precise and accurate information between FHIR-based systems and non-FHIR systems is required. Not having a Person-Centric View as the basis for this exchange will increase the difficulty, work effort, and perhaps even the accuracy of the content of this exchange.
• As FHIR becomes the de-facto standard for modern applications involving management and coordination of a vast variety of services, the ability to incorporate SDOH concepts will be fundamental. Requiring these applications to only provide a Patient-Centric View compounds the difficulty of capturing, discovering, presenting, and analyzing data about a person and their social relationships and SDOH factors. The need of a Person-Centric View for these situations will enhance FHIR to address these situations.

3. Artificial Intelligence and Machine Learning Applications

• There will be AI and ML applications that will use SDOH data developed by professionals , not with a clinical background, but from an environmental and social view. These professionals will not think of the subject of their work to be a patient or a patient population. Their work may focus on the person and factors affecting the person’s well-being.

The sources of data may not be FHIR-enabled,. If HL7 is to incorporate these communities and their data, it is important that the Person-Centric View into FHIR Resources be made available.

• There is a myriad of these AI and ML applications ranging from simple decision table logic to discovery applications for both practitioners and researchers, to machine learning and artificial applications accessing data sources from clinical settings to social networks and facts collected by government agencies who are also attempting to improve outcomes for their citizens. Having semantic clarity about an individual and their  social  relationships is a prerequisite for this class of applications to be developed and shared.

objective of this project is to determine the best path forward for implementing FHIR-based solutions that need to address Social Determinant needs and work with organizations that provide those services while retaining the current FHIR capability to address clinical and behavioral concerns and activities. Because of this objective, a constraint of this project is any outcome presented must be backward compatible with the FHIR R5.0.0-ballot release.

This project will be driven by Use Cases, where different Approaches will be developed for each Use Case, and Evaluation Criteria will be applied to each Approach for each Use Case.

The Use Cases will have documented Persona(s). There will be at least one Use Case that focuses on providing the individual only a social service in a social domain. There will also be at least one Use Case where the Persona has documented issues in clinical, behavioral, and social determinants domains. At the present time, it is anticipated there will be at 3-4 Use Cases.

During the socialization of this project within the HL7 community, several Approaches have been recommended. This project will test different Approaches. At a minimum, there will be two Approaches tested. One will be enhancements to the FHIR Standard to enable Person-Centric semantics and relationships. The second Approach will be to use the present FHIR R5 published specification to address the Use Cases. If there are additional resources available for the project, additional Approaches will be considered such as developing new FHIR profiles and exploring the development of FHIR extensions for the Person-Centric approach. Additionally, the project will develop a high-level, informative, conceptual Domain Analysis Model (DAM) for the Person-Centric approach.

Based on the US Department for the Administration of Children and Families (ACF) experience and socialization within the HL7 community, the following Evaluation Criteria will be considered for each Use Case for each Approach. An objective of the project is to create the necessary information to ballot.

1. Privacy, security, and legal considerations: Identify concerns when the semantics used to define the role of the individual in a FHIR-based system may raise issues because of legal and regulatory considerations.
2. Bi-directional exchange of digital information: Exchange in the Use Cases between FHIR-based systems such as the ACF’s care coordination system, ODH, and other systems non-FHIR systems that capture SD data and social relationships.
3. Human communications between participants provide services to the individual when the description of the role of the individual is important.
4. Development and re-use of software such as Artificial Intelligence, Machine Learning, and other analytical applications: Many of these classes of applications are developed by non-clinical Subject Matter Experts who do not have the concept of the role of a Patient in their vocabulary. Not being able to represent terms in the appropriate semantics may, at best, require additional data wrangling in order to leverage these capabilities and this expertise.

All use cases, technical artifacts, minutes from scheduled program meetings, and other information will be accessible for the project from the HSS Home Page.

It is becoming increasingly evident that Social Determinants (SD) are key factors in determining the well-being of an individual and can negatively impact clinical conditions when these social needs are not met. Numerous studies have shown the impact of SD factors.  For example, a National Academy of Medicine Report stated that “Medical care is estimated to account for only 10-20 percent of the modifiable contributors to healthy outcomes for a population. The other 80 to 90 percent are sometimes broadly called the SDoH”. Significant resources are expended by non-clinical organizations to deliver social and human services to address SD needs. For these non-clinical organizations, their work focuses on the person or individual, their social relationships, and providing social services that can improve the well-being of the individual.

Within HL7, it is evident that FHIR has become the standard for developing new applications. FHIR has proven its ability to deliver clinical applications using a Patient-Centric perspective. The US Department for the Administration of Children and Families (ACF) has developed FHIR-based systems based on this.

ACF  and other federal and state agencies are using FHIR-based systems to assist in delivering better outcomes for their populations by addressing SD factors with appropriate and qualified human and social services. These organizations have found that FHIR can be difficult to provide solutions when working with individuals who need social services as well as working with organizations who provide social services that can improve health outcomes but are not healthcare systems.

The project objective is to reduce the barriers faced in effectively and efficiently delivering FHIR-based systems that incorporate social services and social determinants to improve health outcomes. A secondary objective is to increase the scope and membership of the HL7 community in their use of the FHIR standard.