Confidentiality and Documentation of IPV and Exploitation: Balancing Safety with Data Collection
November 3, 2022
At a clinic embedded within a drop-in center in downtown Pittsburgh for adolescents and young adults who are unstably housed, clients can receive routine care and preventive services. A 19-year-old young person (who uses they/them pronouns) came in for a pregnancy test. The test was positive. They started to cry saying, “I knew it.” After assessing their desires regarding the pregnancy and reviewing options, the clinician offered information about healthy relationships, exploitation, and intimate partner violence (IPV) including reproductive coercion that include (contraceptive interference, condom manipulation, and threats to get someone pregnant). The clinician asked, “Could any of this be part of your story?” Although pushing for disclosure is not the goal when offering universal education about IPV, in this instance, they shared that the coercive partner they were having sex with told them not to use birth control and refused to use a condom. The clinician offered to connect them to an advocate to discuss safety, helped them put relevant hotline numbers discretely into their phone, and set up a follow-up visit to further discuss pregnancy options. The clinician then called her supervisor to ask about how to document this encounter.
This encounter and the clinician’s query highlighted the need for guidance on confidentiality and documentation when caring for patients who have experienced IPV and exploitation. Health professionals and health centers often request specific direction as they work to create clinical environments that address IPV and exploitation in ways that promote safety and healing.
IPV has major impacts on the health of people living in the United States. The Centers for Disease Control and Prevention estimates that about 1 in 4 women and 1 in 9 men experience significant impacts from IPV during their lifetime1 and for men, women, and non-binary people of trans experience, rates increase to 1 in 3.2 Health consequences are far ranging, including substance use disorders, sexually transmitted infections, chronic pain, and depression.3,4 Human trafficking (HT), which has dynamics similar to IPV, is also associated with significant health consequences.5 Thus, the Institute of Medicine, the United States Preventive Services Task Force (USPSTF), and multiple U.S. and global healthcare organizations underscore the need for healthcare providers to assess patients for IPV and to offer connections to support and services.6Although IPV and HT impact individuals across all walks of life and diverse backgrounds, prevalence is higher among those who identify as sexual or gender minority,7 who are American Indian/Alaska Native and non-Hispanic Black women,8 and who have disabilities,9 underscoring intersections with other forms of structural violence.10
Given the myriad of health consequences of IPV and HT, health centers are critical sites for supporting survivors. Indeed, health providers may serve as ‘first responders’ for patients experiencing IPV, the only person a survivor may be allowed to talk to, and the only source for information on supports and safety. Yet survivors of IPV and HT share significant concerns about consequences of disclosing information about violence in their relationships.11 Fear of retaliation, shame, fear of judgment, mistrust of the health system, concerns about child welfare and law enforcement involvement, and limited relevance of existing supports are among the many reasons that few survivors will disclose histories of and current exposure to violence and trauma.12,13 Concerns about breaches of confidentiality and fear of the consequences of disclosure (including increased harm and risk for lethality) may be especially heightened for individuals experiencing multiple forms of structural oppression and marginalization.
Thus, protecting survivor confidentiality is a cornerstone of clinical care along with providing support for survivors that shifts away from disclosure-driven approaches to offering universal education and access to services to all patients, not contingent on disclosures. With the rapid increase in telemedicine since the COVID-19 pandemic as well as expanded access to medical records and electronic health information (EHI) by patients and their proxies (via ‘Open Notes’ and as a result of the 21st Century Cures Act rules), additional systems and practice level changes are needed to ensure that survivors continue to have access to confidential clinical care.14 In addition to directly interfering with a patient’s access to health care and ability to adhere to treatment regimens, people who use violence may monitor phone calls and video visits, force a patient to disclose their password to access their health center ‘patient portal,’ and track information about medical appointments. Thus, many survivors describe having no access to digital privacy, which was amplified during the COVID-19 pandemic and social isolation.14 This need is heightened in practices that serve children and adolescents. Ensuring that adolescents can seek health care confidentially is critical for promoting adolescent health and connecting youth exposed to violence to relevant services and supports.15,16 Similarly, in settings serving children where parents or adult caregivers may be exposed to violence, additional considerations around safety and confidentiality are needed.17,18
With increased attention to the need to respond to IPV and HT in health care settings, since 2020, Uniform Data System (UDS) Clinical Quality Measures now require health centers to report data on the number of visits and number of patients affected by IPV and HT. Over time, health centers may have the option to include universal education as a measure of the quality of IPV and HT care provided in health centers. Ongoing tracking through UDS measures may help to capture prevalence of these two critical challenges among health center patients and offer an opportunity to elevate the importance of addressing IPV and HT to optimize the health and well-being of patients. Health centers must balance tracking and documenting the care provided to survivors that are reflected in the UDS measures while protecting confidentiality of survivors. The advent of Open Notes and wider deployment of telehealth strategies further accelerate the urgent need to implement appropriate practice- and systems-based policies and approaches to safeguard survivor confidentiality and safety.
Key considerations include:
Ensuring safety is the first priority
Standardizing confidentiality as a health center policy
Disclosing with patients the limits of confidentiality
Documenting sensitive topics using “confidential” function (also called ‘sensitive notes’) in the electronic health record
Programing electronic health records (EHR) to remind providers to review privacy, discuss the limits of confidentiality, offer universal education and document
Tracking UDS measures on IPV and exploitation/HT
Incorporating client-centered approaches to documentation
Additional considerations relate to balancing safety and confidentiality with mandated reporting requirements in health centers and are paramount when providing care for children whose parents/caregivers may be experiencing IPV or HT20 and for adolescents for whom privacy and confidentiality are critical.15,16 Health centers caring for parents or adult caregivers experiencing IPV or HT should be aware of the myriad of ways in which a partner who uses violence may attempt to seek health-related information, further underscoring the need to save any documentation about IPV and HT in secure locations within the health record.17
By centering the safety and well-being of patients (and their caregivers) in the development of policies and protocols related to IPV and HT documentation, health centers are positioned to offer survivor-centered, trauma-sensitive care to the many patients impacted by IPV and HT. Before implementation of UDS measures and data collection, policies, protocols, and refinement of the electronic health record are needed to ensure that health systems do not contribute to harm.
This resource was developed with support from the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award to Health Partners on IPV + Exploitation (Futures Without Violence) totaling $650,000 with 0 percent financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more info visit HRSA.gov.
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