Ethically Managing Social Needs Data in an Era of Enhanced Electronic Health Information Sharing

Responsibly managing social needs data requires developing clear standards for how these data are collected and stored, which is often challenging given the myriad ways in which organizations may design screening programs. For instance, social needs information may be collected verbally, via written questionnaire, or electronically, through an organization-provided tablet, a patient or caregiver’s mobile device, or a patient portal. Once collected, these results may be stored on paper, transcribed and stored on a secure server outside the electronic health record (EHR), or pulled directly into the EHR. The lack of standardization across organizations, and sometimes even within a single organization, both limits the ability to collate information to identify areas of greatest need and increases the likelihood that families are screened for social needs repeatedly, which can cause trauma and harm patient–provider trust.

To avoid repeated screening, organizations should develop a health system-wide approach to track whether families have been screened. For example, in our institution, we are implementing an EHR data field that tracks timing and completion of screenings across primary care, subspecialty care, and inpatient settings, with the goal of screening families no more than once every 6 months. Organizations should use input from patients and caregivers to determine the ideal frequency of screening and ensure families feel supported, rather than burdened or stigmatized.

Ethical social needs data management also requires robust technological support, but current EHR platforms often have limitations and loopholes that can compromise privacy.⁶  For example, in our institution, we found that we were unable to prevent the results of an EHR-integrated social needs questionnaire from being visible to all individuals with access to a patient’s portal. As a result, if one caregiver disclosed a social need (eg, housing instability or intimate partner violence), this information would be visible to all other caregivers with access to the child’s chart, potentially resulting in unwanted and unsafe disclosures.

To avoid inappropriate disclosures, organizations should work closely with clinical informaticists to understand potential EHR loopholes, particularly as changes are being made in EHI data sharing to comply with 21st Century Cures. Although we continue to advocate for EHR modifications to close the loophole discovered in our own institution, we have adopted an interim workflow in which screening results are stored on a secure server outside of the EHR, referrals to social work are made via secure e-mail, and social needs are later documented in the EHR in the form of social work notes (which can be protected when necessary under Cures Act exception criteria). Although this approach ensures privacy, it may hinder our ability to efficiently communicate relevant social needs with all members of a patient’s care team. Thus, updates to the EHR are urgently needed for social care interventions to have maximal reach and impact.

Achieving consensus around how, when, and with whom social needs should be shared is critical, yet can be difficult. For example, some caregivers may feel comfortable disclosing social needs to a trusted primary care provider but prefer that information not be shared with providers with whom they have a less-established relationship. In addition, given that some social needs may be transient, families may appropriately prefer that their needs not be documented on their child’s problem list. Finally, at least 7 state Medicaid programs require or encourage social needs documentation using International Classification of Diseases, 10th Revision, Clinical Modification Z codes.⁷  Families may feel uncomfortable with the use of these diagnosis codes, which are viewable by all providers.

To avoid compromising families’ trust, organizations should be transparent with patients and caregivers about their policies for social needs data sharing and allow families to opt out of having social needs stored and shared through the EHR. If organizations use International Classification of Diseases, 10th Revision, Z codes to document social needs, families should be aware that these diagnosis codes may appear on after-visit summaries or on their child’s problem list in future clinical encounters. Organizations should also train providers in sensitively communicating with families regarding social needs documented in a child’s problem list during a previous encounter.

A final and critically important challenge for organizations is anticipating how they will track and respond to patterns of racism and bias in clinical practice that may result from documentation and sharing of social needs. For example, documented social needs (eg, housing insecurity or intimate partner violence) may impact how a provider communicates with a family, how they frame questions about caregiver parenting or discipline, or even their likelihood of making a referral to child protective services.

To address this challenge, organizations should implement training to ensure providers are aware of the potential for bias related to the documentation of social needs. Throughout program implementation, institutions should also identify and track balancing measures (eg, increases or disparities in referrals to child protective services) to detect and proactively address any emerging patterns of bias.

Understanding and addressing families’ social needs is vital to advancing child health, addressing health disparities, and building a health care system that more effectively integrates social care with health care. As all health care organizations expand EHI transparency, those engaged in social needs screening must critically evaluate existing programs and intentionally design emerging programs to ensure responsible and forward-thinking stewardship of patients’ and families’ data.

EHI

electronic health information

EHR

electronic health record