Abstract
OBJECTIVES: Care coordination is a core component of pediatric complex care programs (CCPs) supporting children with medical complexity (CMC) and their families. In this study, we aim to describe the purpose and characteristics of clinical care notes used within a pediatric CCP.
METHODS: We conducted observations of provider-family interactions during CCP clinic visits and 5 focus groups with members of the CCP. Focus groups were recorded and transcribed. Field observation notes and focus group transcripts were subjected to qualitative content analyses.
RESULTS: Four major themes help characterize clinical care notes: (1) Diversity of note types and functions: program staff author and use a number of unique note types shared across multiple stakeholders, including clinicians, families, and payers. (2) motivations for care note generation are different and explain how, why, and where they are created. (3) Program staff roles and configuration vary in relation to care note creation and use. (4) Sources of information for creating and updating notes are also diverse. Given the disparate information sources, integrating and maintaining up-to-date information for the child is challenging. To minimize information gaps, program staff devised unique but resource-intensive strategies, such as accompanying families during specialty clinic visits or visiting them inpatient.
CONCLUSIONS: CMC have complex documentation needs demonstrated by a variety of professional roles, care settings, and stakeholders involved in the generation and use of notes. Multiple opportunities exist to redesign and streamline the existing notes to support the cognitive work of clinicians providing care for CMC.
Children with medical complexity (CMC) represent the most medically fragile groups of pediatric patients with intense health care service needs.1 Their care often involves frequent encounters with the health care system and substantial health care expenditures.2 Although a universal definition does not yet exist, CMC have been characterized as those who have1 (1) severe function limitation, (2) dependence on medical technology, (3) chronic conditions, and (4) high use of health care resources.
Several studies have documented unmet health care needs for CMC due to care fragmentation and inadequate support for coordinated and family-centered care.3–7 Recognizing these gaps, several US children’s hospitals have established programs dedicated to coordinating care for CMC and their families.8 A unifying theme across these programs has been the requirement for coordinating tasks and developing shared awareness of families’ needs across the myriad of professionals and care settings within CMC’s care universe, a need that has also been recognized by a recent federal legislation, the Advancing Care for Exceptional Kids Act.9,10
A multitude of tools and strategies have been described to support care coordination.11–14 Many of these care coordination approaches are enabled by electronic health records (EHRs); however, research has identified several gaps in EHR design and functions, which contribute to poor information sharing across multiple stakeholders.15,16 The inadequacies of EHRs are critical because a key aspect of care coordination involves developing shared awareness of patient-specific information across diverse groups of clinicians. Indeed, with the increased adoption of EHRs, the use and accessibility of clinical care notes has improved over the manual system of the paper-based medical records era, leading to improved quality of care in many care specialties.17–20 However, given the demanding and complex care coordination needs of CMC, little is known about how clinical notes are created, used, and shared across a distributed team of health care professionals caring for CMC. Developing a deep understanding of such gaps is a first and important step toward the design and improvement of clinical information systems that meaningfully support the work of clinicians and improve the health care experiences of CMC and their families. Central to this need is also the requirement for clinical care notes to support shared awareness of patient information among health care professionals while minimizing cognitive under- or overload caused by information fragmentation. Informed by a qualitative study design, our goal for this article is to describe characteristics of clinical care notes and highlight current gaps in the context of a pediatric complex care program (CCP).
Methods
Study Setting and Participants
The study was conducted within a pediatric CCP of a 296-bed tertiary care children’s hospital in the Midwest region of the United States. The CCP was established with the primary goal of providing care coordination and medical comanagement services for CMC and their families. As such, the CCP offers a supportive service, essentially becoming a medical home for families of CMC without being a primary or specialty care provider. Families are enrolled into the CCP on the basis of established criteria for support when referrals are made by providers in specialty clinics or inpatient services. Once families are enrolled into the program, the CCP staff establish routine contact with families, including monthly phone calls, scheduled care coordination visits that are done every 6 months (or more frequently as needed), inpatient visits when the child is hospitalized, and home visits as necessary.
Participants for this study were core staff of the CCP, representing physicians, nurse practitioners (NPs), nurse care coordinators (registered nurses [RNs]), and care coordination assistants (CCAs). All members of the CCP worked at least for 6 months in the program and were eligible for participation. Participants were invited for the focus groups as their time allowed. The focus group sessions were led by a senior researcher, who is also a physician member of the study site hospital (M.C.S), with 3 other members of the research team taking notes and asking follow-up questions as needed. All 4 researchers are not part of the CCP. The ethics board of the study site hospital determined that study met the requirements for exempt status.
Data Collection and Analysis
We employed a qualitative design involving field observations and 2 rounds of focus group discussions with CCP staff, with field observations between the 2 rounds of focus groups. The first focus group round was focused on identifying the clinical notes relevant to the CCP, the goals of these notes, staff roles associated with the notes, and the process with which these notes were created, updated, and used. Three separate focus groups were performed in round 1, in which the study team led the participants through discussions to explore the content, goals, work processes, and perceptions toward each note type. During these focus groups, participants were purposely grouped by role to provide comprehensive discussion on the note types they use, generate, or update as well as the specific tasks they perform and potential barriers. A list of prompt questions is provided in the Supplemental Information. A total of 3 CCAs, 4 nurses, and 3 providers (physicians and NPs) participated.
After preliminary analyses of round 1 focus groups, field observations were performed to document CCP interactions with families of CMC. The goal of these observations was to compare focus group results with observations and capture information or tasks related to CCP notes that were not discussed in the focus groups. Specifically, a study team member shadowed CCP providers during preparations before the patient encounter, dialogue and actions during the encounter, and actions taken after the encounter, all done for routine follow-up clinic visits. The observer noted tasks performed, questions asked, note types used, and, when feasible, provider responses to observer queries (outside of clinician-patient interaction). A total of 4 patients and 3 CCP providers were observed over 2 days, with each observation period lasting ∼1 hour across the 4 different patients.
A second round of focus groups was performed after completing analyses of the field observations to validate findings distilled from the previous focus groups and observations. A PowerPoint presentation was used to guide discussion on the purpose of the research and summarize content of each note type and how each note was integrated within the overall care process (eg, authors, end users, information sources, and time line for creating each note). Two separate focus groups were conducted in round 2, each lasting ∼45 minutes. In the first focus group, 3 NPs, 1 physician, and 3 RN care coordinators participated. Participants in the second focus group included 5 NPs, 4 CCAs, and 2 RN care coordinators. A final debrief was conducted with a physician member of the CCP to review findings from previous 2 focus groups and discuss programmatic implications of findings. All focus group sessions were audio recorded, with study team members taking notes to provide clarifications and additional details, as necessary.
Audio recordings were professionally transcribed and analyzed by using NVivo 11 Pro (QSR International, Australia). Among the most commonly used qualitative data analysis software tools, NVivo allows the analyst to import and organize qualitative data (eg, textual information, images, audio). The software’s coding features allow the analyst to attach specific labels (codes) to a piece of textual information in the qualitative data (eg, interview transcript). For this study, we followed a content analysis approach to generate a preliminary list of codes. Our team of 3 senior researchers and a research assistant regularly met to review and refine the coding list and created a coding framework for use in the subsequent analytic stages. Using the coding framework, 2 members of the team (D.Y. and H.C.) coded all transcripts. Coding was reviewed by a third member of the team (E.A.) trained in and experienced with qualitative research. Codes were then aggregated by E.A. to generate the overarching themes. All 4 members of the team meet regularly and refined and finalized the themes.
Results
Many types of clinical notes were used in the CCP, and identified note types varied by author, intended end users, and purpose (Table 1). Analyses of data yielded 4 themes related to characteristics of clinical care notes and the contexts within which they are created, shared, used, and updated: (1) diversity of note types and functions; (2) sources of information and note update patterns; (3) program staff roles, team configuration, and relationship to note creation and use; and (4) motivations for note creation. Example quotes are provided for each of these themes in Table 2.
Summary of Note Types Used by CCP Staff
Example Quotes From Focus Group Participants
Diversity of Note Types and Functions
The diversity of care notes reflected the complexity of patient care needs and how their care is organized and delivered in the context of the CCP. The core types of care notes authored and primarily used by members of the complex care team, and existing as stand-alone documents, include the following: (1) summary note, (2) telephone documentation note, (3) clinical support document note, and (4) documentation-only note. In addition to these note types, program staff also use other notes authored by staff in other care settings, including inpatient progress notes, care coordination notes, specialty clinic notes, consultation notes, discharge notes, and notes originating from outside of the hospital.
The highest impact note, the summary note, is an amalgamation of individual notes authored by each of the 3 core staff roles in the CCP: providers (physicians and NPs), RN care coordinators, and CCAs. Providers then assume the role of collating and synthesizing information to generate a final version of the note. An important finding is the multitude of the summary note’s purposes and the end users who depend on it to meet their respective goals. As an illustrative example, the summary note (mostly in the same format) is used by different stakeholders in the manner described below:
The summary note is shared with families of the children to serves as family documentation and facilitate access to community resources and Medicaid-funded programs. Families also use the summary note to share information with other clinicians who may not be able to access the health system’s EHR, use it as a reference material when going on vacation, and share with their children’s schools.
The summary note is used as a cognitive aid for CCP staff to facilitate quick access and retrieval of a child’s medical information. Here, the summary note is also used to facilitate a chart review in preparation for a clinic visit and as a reminder for follow-up plans.
The summary note is used to share information with primary care providers and subspecialists involved in the care of a child.
The summary note is used for Medicaid audits to reveal achievement of contractually agreed goals and deliverables.
Unlike the summary note, the other types of notes generated by program staff appeared less extensive and complex in terms of their content and variety of end users. However, close examination of their actual purpose and how they are used by program staff revealed the tensions between multiple goals, as described below with the note type indicated in parentheses:
the need to properly document and communicate information to advance patient care (telephone documentation note, clinical care support documentation, summary note);
the need to capture and document clinical and administrative work to support financial goals through appropriate billing (telephone documentation note, documentation-only note, summary note); and
the need to document care across distributed care settings, including in the CCP clinic, specialty clinics, inpatient care areas, and patient homes (clinical care support documentation during specialty clinic visit with families, inpatient progress summary when a child under care of the CCP is admitted and treated as inpatient).
Sources of Information for Creating and Updating Notes
The findings also reveal the complex work of CCP staff in gathering patient information, updating their care notes, and communicating with clinicians within and outside of the CCP. These tasks are distributed across care settings and time (Fig 1), some of which involve long latency periods.
Framework summarizing care note types frequently used by CCP staff and their relationships to each other.
CCP staff described their program’s function as maintaining constancy of contact with families while aiding them in navigating a complex maze of health care actors and care settings. This function is highly dependent on CCP staff maintaining accurate and constantly updated information regarding the health care and social circumstances of the child and family caregivers. This is achieved through a combination of sources and strategies, including the following:
Family visits to the CCP clinic occur once every 6 months, at which time the summary note gets updated. During these visits, families become the main source of information and help triangulate information obtained from other sources (eg, during specialty clinic visits, other facilities). Events that occur between regular visits cannot reliably be captured in the CCP summary care notes.
Program staff also interact with other clinicians to source updated information for children enrolled in their program. This often involves a physical presence in patient care locations (outside of their own clinic), such as inpatient settings (when a child is admitted) and covisits with families during specialty clinic encounters.
After hospital discharge, program staff also make contact with families and gather information to help update their care notes.
RN care coordinators conduct home visits with families most in need for care coordination support, during which time information will be gathered and used to update notes.
CCAs constantly look for and update information on families’ social circumstances, community resources, and family dynamics to help inform strategies that are tailored to the needs of individual families.
Despite their best efforts to source and maintain accurate patient information, CCP staff enumerated a number of challenges associated with the accuracy, completeness, and timeliness of clinical information. For example, inpatient or specialty clinic providers may document changes to medication regimens in their notes without an actual change to the child’s medication list in the EHR. In this case, critical medication information may be buried in care notes and missed by program staff and other providers. Participants also discussed uncertainty related to whether information in their care notes (eg, summary note) can be accessed by inpatient providers to help inform their care decisions. Relatedly, CCP staff also mentioned the challenges of communicating patient information with non-CCP clinicians because the EHR does not intuitively make new information obvious to recipients, thus forcing them to engage in additional work in the form of follow-up communication via e-mail or using the EHR messaging feature.
Program Staff Roles, Configuration, and Relation to Care Note Creation and Use
The 3 core staff roles (providers, RN care coordinators, and CCAs) are integral to the functions of the CCP. As necessary, this group also works with other hospital staff depending on the needs of each family (eg, social workers and medical interpreters).
We identified unique roles and team configurations in the program with important implications for work coordination, information sharing, and decision-making. CCAs work with RN care coordinators to form a dyad that, in turn, pairs with a provider who is available for the day, often dictated by program scheduling. Membership of the dyad remains the same to ensure continuity of familial relationship. As a result of this arrangement, RNs and CCAs share some aspects of note generation that will be integrated differentially into the final version of the summary note. During the discussions, the CCAs described their main tasks as including collecting and tracking information on community resources, supporting the coordination of care appointments, and liaising with external stakeholders to support families. These tasks involve gathering and tracking a range of information sourced from families, other providers, and community organizations as well as manual extraction from the EHR. Importantly, the CCAs described their uncertainty on whether the information they compile into their notes would be accessible by clinicians from other settings.
Motivations for Care Note Creation
Identified notes and their functions highlight the multiple goals that need to be supported within the organization as well as the trade-offs that need to be made. Participants revealed the challenges faced by CCP staff in using the enterprise-wide EHR system. For example, RN care coordinators discussed their previous use of the telephone documentation note as a tool to document their telephone interactions with families and administrative tasks (eg, faxing patient information). Later on, they started using a new type of note (the documentation-only note) as a way to declutter the telephone note and document administrative tasks that may not be captured in other note types.
Ensuring appropriate billing, thus generating relevant documentation, was also an important driver of note creation in the CCP. For example, program staff described the clinical support document as serving dual functions. This note type is generated when CCP staff covisit with families in other services (eg, specialty clinics). This practice provides contextually rich information to the CCP staff compared with what can be gleaned from simply reading an EHR note. We identified similar strategies used by CCP staff in other settings as well, such as writing their own progress notes when visiting their patients admitted to the hospital. Under such contexts, the CCP staff are not considered the primary care team and document their patient care tasks in a different note type, although the tasks can be exactly like ones performed when families visit the regular CCP clinic.
Other factors motivating note creation and specific contents were also discussed by CCP staff. For example, contractual agreements between the CCP and the state’s Medicaid program set expectations for provision of services for families enrolled in the program. CCP staff routinely document tasks and are subjected to audits from Medicaid. Staff also described using some of the notes (eg, documentation-only note) to ensure a record of activities and tasks as a way of protection against professional and legal liability.
Discussion
In increasingly digitized health care, care notes play an invaluable role for coordinating care for patients managed by diverse groups of clinicians. In this study, we sought to characterize clinical care notes as part of a widely used EHR system in the context of a hospital-based pediatric CCP. Analyses of qualitative data from observations and focus group discussions with the program staff yielded 4 themes related to generation, features, and use of care notes: (1) diversity of note types and functions; (2) sources of information and note update patterns; (3) program staff roles, team configuration, and relationship to note creation and use; and (4) motivations for note creation.
The complex care demands of CMC create unique challenges to meet the information needs of multiple users and varied contexts. Indeed, as our findings revealed, care notes were being used to serve multiple users and goals, including clinicians involved in the child’s health care, families, and program funders. On the 1 hand, information consolidated in 1 note can be beneficial because it provides a single point of reference for accessing summarized information representing a child’s longitudinal health care experience. This is observed in the case of the summary note in the CCP. However, searching and retrieving specific clinical information can be a cognitively demanding task, creating opportunities for information lapses21–23; this may be especially critical for CMC, for whom significantly more information, providers, and notes are required for quality care. Without thoughtful design approaches, clinicians are likely to experience usability challenges as they navigate the EHR and work with its documentation components, including the care notes. A recent study, for instance, revealed that 36% of 9000 analyzed patient safety reports had a usability issue that contributed to a medication-related incident.24 Patient safety hazards from what some have referred to as information chaos in the EHR have previously been described and occur when clinicians are confronted with information overload, underload, scatter, conflict, or content that may be erroneous.25 An illustrative example mentioned by CCP staff was clinicians documenting medication information (eg, dose changes) in locations within the EHR that others may not expect to find such data. This practice violates information expectancy,26 a key principle in information and display design, potentially contributing to erroneous decisions.
In addition, using the same visual representation of information for multiple users can be challenging because of differences in mental models and limited skills for navigating information.27,28 This is particularly relevant for family caregivers using a clinic-provided summary note both for their own documentation and when sharing it with external stakeholders.
Our findings also offered key insights into the various motivations driving note creation as well as the work-arounds implemented by the CCP staff to surmount documentation challenges emanating from the need to achieve multiple goals, such as capturing complete and accurate patient information and billing for clinical services. This may also point to challenges of the prevailing methods of reimbursements for health care services, in which clinicians are required to provide documentation as evidence of services. For example, despite serving similar functions, the clinical support document and summary notes exist as stand-alone documents within the EHR. Subsequently, information from the clinical support document may be integrated into the summary note. Regardless, this may contribute to double documentation, data overload, and increased potential for information fragmentation and loss.29 Studies from other settings have documented similar challenges with poorly implemented EHR design and workflow failing to accommodate the practical realities of clinicians working in diverse and distributed care settings.30
Current-generation EHR systems deployed in hospitals are complex tools and have important limitations that may threaten patient safety.31,32 In our study, we identified key gaps in the EHR information design that impact the use of care notes by the CCP staff. Clinicians must often navigate multiple pages of care notes and look for information scattered across multiple locations, impeding their ability to efficiently retrieve patient data and develop a good situational awareness. Furthermore, the retrieved information may be outdated, erroneous, and not trustworthy, often forcing duplicate or additional work. Challenges related to information uncertainty, overload, fragmentation, and lack of individual- and team-level situational awareness33 will thus need to be important targets for system redesign initiatives. Such initiatives must also be informed by a deep understanding of human limitations, capabilities, and the sociotechnical contexts34 within which such tools and their components are used.
A sociotechnical approach toward design of care notes and documentation practices supporting the care of CMC can offer multiple benefits. One such framework, called Systems Engineering Initiative for Patient Safety,14,35,36 posits that system and clinician performance (eg, improved documentation) is influenced by the interaction of multiple system components, including (1) people (eg, CCAs, RNs, NPs) (2) tools and technology (eg, care notes, EHR), work environment (CCP clinic, inpatient floors), (3) tasks (eg, information retrieval), and (4) organization (eg, team work, team design). A sociotechnical approach thus minimizes the unintended consequences of ad hoc approaches to care note creation (ie, tool) by considering the potential impact of other system components. Examples of clinical information displays designed by leveraging a sociotechnical approach exist and are grounded by a deep understanding of the work done by clinicians.37 Likewise, a similar approach can be applied to develop a deep understanding of family experience with health care and to redesign care notes to align with such needs, including enabling improved care experience through a patient journey approach.14
We highlight important limitations of our study. The study was conducted in a single hospital, and findings may have limited generalizability to other settings. Pediatric CCPs across North America vary in their design and loci of focus. In addition, because of state-specific policies and funding structures, some of the issues we identified may not be applicable to other settings. Nevertheless, we believe that many of the challenges we identified are likely shared by other CCPs and can be of benefit to clinical leaders interested in creating similar programs or planning to revamp existing ones. Our study was also limited to exploring the perspectives of the CCP staff and did not include clinicians from other settings (eg, inpatient providers, emergency department). Although the study’s scope was limited to the CCP setting, we recognize the critical need to understand care note use practices and the information needs of clinicians throughout the patient and family health care journey, including in the inpatient, emergency, and outpatient care settings. Our team is planning to expand the project and explicate needs from the perspectives of clinicians from other settings as well as family caregivers of CMC.
Conclusions
Our findings highlight that CMC have complex documentation needs, as demonstrated by the diversity of clinician roles, care settings, and information sources as well as by motivators for generation and use of care notes. Multiple opportunities exist to redesign and streamline the existing notes to improve shared awareness, support the cognitive work of clinicians and family caregivers, and improve care coordination. Central to these redesign efforts will be the need to develop better tools and processes that support clinician performance and well-being as well as enhance the experience of families as they journey through the health care system.
Round 1
Focus groups were asked selected questions from the following list. Questions may be repeated for different note types. Additional specific follow-up questions were asked in addition to the selected questions below:
How often does that get updated? [insert note type]
What do you think is the main goal for the [insert note type]?
Did we miss anything?
Who is the customer for that?
Who is the audience for that note?
Do your [insert audience] ever read your [insert note type]?
Are you satisfied with the tool you have for what you are doing?
What notes do you routinely touch?
What notes are you contributing to?
What is that for?
Round 2
Focus groups were asked selected questions from the following list. Note that additional specific follow-up questions were asked in addition to the selected questions below:
Are we accurately capturing your work and the work that goes on?
Are we on the right track?
Is there anything that is inaccurate?
Is there any content that we have missed? [insert note type]
Is that a fair description of the content of the care coordination note?
Which of the different providers in the CCP update this, and when does it typically get updated?
What other services tend to adjust things in that note?
What are the reasons for it to exist? [can be asked for each note type]
What is the value of it? [can be asked for each note type]
What audience is your colleagues in complex care as well as external customers?
Is there any content that we are missing?
How do you use it, or why do you use it?
Are there any other reasons for or uses of this [insert note type] that you can think of?
How often do you read [insert note type]?
Do you know where to find [insert note type]?
Is there a better tool we could help offer?
Is that a fair snapshot?
Is there anything major that is not reflected there?
Are there problems you have run into? [insert note type]
Is [insert note type] a useful note to you?
How much duplication is there in this note? [can be asked for all note types]
Acknowledgments
We acknowledge all members of the CCP at the study site hospital.
Footnotes
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
References
- Copyright © 2020 by the American Academy of Pediatrics
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