Barriers to Family-Centered Care in the Electronic Health Record
Event Type
Oral Presentations
TimeThursday, April 151:10pm - 1:30pm EDT
LocationDigital Health
DescriptionThe concept of family-centered care has existed for over fifty years and includes as one of its champions, U.S. Surgeon General, Dr. C. Everett Koop. Early forms of family-centered care focused on pediatrics in supporting the family in caring for children with disabilities or chronic illness (Johnson, 2000). Family-centered care continues to evolve to address a broader range of care scenarios to include all family members while simultaneously adapting to the continually changing definition of the family itself (Clay and Parsh, 2016).

The electronic health record (EHR) evolved from computerized provider order entry, billing, and scheduling systems designed to support the care of a single patient in a single healthcare organization. This underlying architecture can present barriers in applying the EHR to new and broader healthcare use cases. For example, it is well known that adoption of the EHR has revealed significant challenges in interoperability; the ability to share patient records across healthcare organizations. The underlying architecture of the EHR was not designed to represent the existence of multiple organizations. Even if data standards were resolved, sharing records would still impose barriers and inelegant workarounds, such as managing the reconciliation of contradictions between versions of the record (allergy list, medication lists, problem lists, family history, surgical history…).

Pediatric medicine, and primary care in particular, reveal similar limitations in how the EHR architecture fails to represent families. Until recently, the most widely used EHRs were incapable of identifying any two or more patients as siblings, children, parents, spouses, or any other family relationship, even twins. Recently some vendors have added functionality to link patients, but this appears to be limited to essentially copy-pasting family history information and requires the organization to properly configure the functionality, and family connections made by clinician users for all patients. Even with this functionality the EHR architecture remains fixed at the level of the individual patient and is incapable of adequately representing the family in developing new family-centered care interventions.

An example of a new form of family-centered care is household smoking. Pediatricians are uniquely positioned to protect children from tobacco and secondhand smoke exposure by educating, motivating, and initiating tobacco dependence treatment for parents who smoke (Pbert et al, 2015). Approximately 17% of US adults smoke cigarettes, but secondhand smoke exposure affects approximately 40% of the US pediatric population and increases the risk for acute respiratory infections, sudden infant death syndrome, and premature death, and exacerbates chronic respiratory diseases such as asthma (Homa et al, 2017). Parents who smoke are often underserved medically, without regular contact with an adult healthcare clinician, yet they see their child’s pediatrician an average of three to four times each year. Of course, smoking cessation is also beneficial to the parent, other household family members that may include other relatives such as grandparents (who may or may not be smokers), as well as the family as a whole in improved health, quality of life, and finances.

In developing a family-centered care clinical decision support system to support pediatricians and families to address household smoking, we encountered multiple implementation barriers based on the EHR’s inability to represent family relationships. Addressing each barrier required inelegant workarounds and insufficient solutions from a technical, workflow, and usability perspective. For example, the EHR is designed to deliver health questionnaires at the individual patient level, but there is no capability to deliver questionnaires addressing the family or household overall. By default, the questionnaire must be assigned to all children and the EHR is incapable of identifying the questionnaire as complete for the other sibling(s). This presented complex barriers in the seemingly simple task of delivering a single family-focused questionnaire to the parent of more than one child. Another barrier involves adolescents where the EHR is configured to deliver questionnaires to the patient and not the parent. In addition, more than one member of the household may be a smoker, and a household may include grandparents and other relatives who smoke. Using the EHR to deliver the same questionnaire to multiple family members, electronically and within a primary care workflow, was too complex to be addressed in the first phase of this work. Additional barriers were encountered in other family-centered tasks such as generating family member electronic prescriptions for nicotine replacement therapy, managing follow up, and outcomes measures.

At a more practical level there are barriers to efficiently managing family-centered documentation tasks such as single entry and maintenance of a shared family history, social history, or even entry of a mother’s cell phone number. Beyond the scope of smoking cessation, our research team has encountered cumbersome and limiting EHR imposed family-centered barriers in developing interventions for genetic medicine and the treatment of children with attention-deficit hyperactivity disorder. By its very nature, it is almost certain similar barriers exist in family medicine.

It seems safe to assume family-centered care will continue to progress. Ideally the EHR should evolve to support new and innovative forms of family-centered care, but the difficulty and feasibility of addressing the underlying EHR architecture is unknown, and developing effective family-centered care interventions may require custom or proprietary approaches. In addition to the technical challenges there are a range of sociotechnical factors that require consideration such as privacy, security, patient preferences, and the 3rd party insurance model in the United States.

Human factors researchers have a well-established history of working with other researchers, informaticians, clinicians, patients, and families in producing research and methods for effective user-centered design and, more recently, patient-centered design. Human factors researchers can contribute meaningfully to disseminating similar methods for family-centered design by building on existing frameworks and methods. The Systems Engineering Initiative for Patient Safety (SEIPS) sociotechnical framework has been used for integrating human factors methods in healthcare since 2006. In 2020, SEIPS 3.0, expanded the sociotechnical process component “…using the concept of the patient journey” representing patient interactions with multiple healthcare system elements (Carayon 2020). The SEIPS framework has proven to be adaptive and can serve as the foundation for future work in representing “the family journey” toward defining the architecture required to support effective and innovative family centered care interventions.

Carayon P, Wooldridge A, Hoonakker P, Hundt AS, Kelly MM. SEIPS 3.0: Human-centered design of the patient journey for patient safety. Applied Ergonomics. 2020 Apr;84:103033.

Clay, AM, Parsh, B. Patient- and Family-Centered Care: It’s Not Just for Pediatrics Anymore. AMA Journal of Ethics. 2016 Jan 1;18(1):40–4.

Homa DM, Neff LJ, King BA, et al; Centers for Disease Control and Prevention (CDC). Vital signs: disparities in nonsmokers’ exposure to secondhand smoke—United States, 1999-2012. MMWR Morb Mortal Wkly Rep. 2015;64(4):103–108

Johnson BH. Family-Centered Care: Four Decades of Progress. Families, Systems & Health. 2000 Jun 22;18(2):137–137.

Pbert L, Farber H, Horn K, Lando HA, Muramoto M, O’Loughlin J, Tanski S, Wellman RJ, Winickoff JP, Klein JD. State-of-the-art office-based interventions to eliminate youth tobacco use: the past decade. Pediatrics. 2015 Apr 1;135(4):734-47.
Principal Human Computer Interaction Specialist
Research Integration Analyst Programmer
Director of the Center for Pediatric Clinical Effectiveness