Exploring Perceptions and Use of the Electronic Health Record by Parents of Children with Autism Spectrum Disorder: A Qualitative Study

Abstract

This qualitative project used structured interviews with nine parents to examine perceptions of the electronic health record (EHR) and associated patient portal in the treatment of their child’s autism spectrum disorder. Thematic analysis identified six complementary themes including: Familiarity and exposure to the EHR, changing experience of care (streamlining appointments, providing more rapid medical record access, increasing clinician awareness of the complexity of their child’s medical treatment, and facilitating prescriptions), portal use, patient/EHR/portal interaction, interoperability, and mother as care coordinator. While aware of the patient portal, only one-third had registered to use it and these parents reported only limited use. In general, perceptions of the electronic health record are positive, but the patient portal has yet to have needed consumer adoption. Further research and functionality are needed to increase portal registration and greater portal integration in patient care.

Introduction

The Electronic health record (EHR) contains individual health-related data and is designed to retain the information in a secure environment while also accessible by clinicians and other related staff.(1) The related patient portal provides a protected online website from which patients can use a secure login to view their health information using an Internet connection, as well as communicate with their health care providers via a secure electronic system, and to schedule appointments.(2) The EHR and patient portals provide potential avenues for patients to become more involved in their health care and could facilitate coordinated multidisciplinary care and shared decision making. (3,4) Currently, little is known about how the increased use of the EHR in the pediatric clinical environment is affecting the treatment of pediatric patients with autism spectrum disorder (ASD).

ASD is characterized by impairments in social interaction and communication along with restricted, repetitive, and stereotyped patterns of behavior (5), affecting as many as 14.7 per 1,000 (one in 68) children.(6) ASD is a complex health problem with significant co-morbidities including intellectual disability, hyperactivity, and anxiety.(7) The presentation of ASD can vary widely among affected individuals and within an individual over the lifespan.(8,9)

Children with ASD require early and ongoing intensive intervention across multiple treatment areas, including behavioral, educational, rehabilitative (speech, occupational therapy), mental health, and medical treatments. Behavioral treatments comprise the most common interventions for children with ASD.(10) Interventions range from highly structured programs conducted in one-on-one treatment settings to behaviorally based inclusion programs that include typically developing children as models. In addition to behavioral treatment, speech and language therapy, and occupational therapy for their condition, children with ASD are at increased risk for a number of other conditions that are associated with increased health service utilization such as seizure disorders, sleep disorders, and gastrointestinal disorders. (11–14) While some of the therapies are delivered in an educational or behavioral treatment environment, services such as speech and occupational therapy and more recently behavioral services are often delivered in the outpatient hospital or clinical setting and documented in medical records along with physician and specialty medical services.

The prevalence of EHRs is increasing in the United States(15) and it is estimated that by the end of 2014 most Americans will have computerized health information.(16) Studies have demonstrated the use of EHRs can reduce medical errors, enhance communication between doctors and patients, and promote continuity of care.(16) The EHR can be used to incorporate emergency department, inpatient, outpatient (including satellite clinics), laboratory, and radiology input in a tightly integrated record management system. Computerized physician order entry allows providers to manage and communicate orders and results, which are recorded electronically. The electronic system also captures data resulting from patient registration, appointment scheduling, billing and other business related functions, providing a wealth of data.

Providing access to individual healthcare information for example laboratory results and current medications, as well as being able to securely communicate with their health care providers has the potential to improve overall care experience through increased health care understanding and knowledge. In practice, there are acknowledged issues of privacy and security concerns, as well as the potential impact of changing the interaction between the health care professional and the patient when bringing a computer into the relationship. (17) Additionally, the issue of interoperability and sharing of health data across multiple organizations or within different settings of care is a reported frustration and barrier to use of the EHR. (17) Pediatric use of the EHR introduces additional complexities including providing needed access to parents and other designated caregivers, which can result in multiple individuals needing access to a record, as well as tracking immunizations, growth patterns, and frequent medical encounters. Studies looking specifically in children with cystic fibrosis, diabetes mellitus, and juvenile idiopathic arthritis(18–20), as well as the use of the EHR for children under the age of 5 with multiple chronic conditions (21), note generally positive interaction. Parents reported increased understanding of their children’s chronic conditions, as well as better communication with their child’s health care provider.(18) To date, there has not been a study specifically examining the EHR and its incorporation in pediatric ASD treatment. Further patient and caregiver input is needed in order to design a consumer friendly interface so that EHR, including the patient portal, becomes a patient care tool and can be used to manage approaches to treatment that recognize individual pediatric patient needs.

The aim of this study was to use qualitative methodology to obtain the perspective of parents whose children have ASD on the utility of the EHR as an instrument in their children’s treatment. A secondary objective was to estimate the potential loss of medical encounter information due to EHR interoperability issues.

Methods

Data were collected from parents who had a child less than 19 years old, with a previous diagnosis of autism spectrum disorder (ASD) recorded in their medical file, and had been a patient at a tertiary academic children’s hospital in southern California during 2013 to explore the utility of the EHR as an instrument in their children’s treatment. Potential participants were identified using a list of patients at the Autism Discovery Institute (ADI) at the children’s hospital who had completed a form indicating that they were interested in participating in autism studies. Some of the first participants referred a parent they knew whose child was seen at ADI whom they thought might want to be interviewed. All study procedures, including protocols for recruiting participants and obtaining informed consent, were reviewed and approved by the appropriate administrative and university Institutional Review Boards for the protection of human subjects prior to study initiation. All parents gave informed consent, including willingness to participate in a telephone interview and to be recorded. The parent sample consisted of 9 mothers of 10 children (one family with two children with ASD) who children ranged in age from 3 to 18 years. Nine of the 10 children were male. Of the 9 mothers, 3 (33%) were Hispanic/white and 4 (44%) were non-Hispanic/white and 2 (22%) were African American. The mothers ranged in age from 35–54.

Qualitative methods via a structured telephone interview were used to investigate the use, attitudes, and suggestions from parents with children who have an ASD diagnosis. A telephone interview approach was chosen, based on parent feedback, as the most convenient approach to fitting it in their schedule. The interview was designed by the author in consultation with experts in areas of autism treatment, the EHR, and qualitative methodology. Initial development of the topic areas included a review of the literature of use of the EHR in pediatric practices and among children with chronic conditions. Previously reported strengths and weaknesses of the EHR and Patient Portal for children with chronic conditions were reviewed (19,21,22) and provided the foundation for interview questions.

Additionally, the interviews were constructed to determine how complete the medical encounter data were. Parents were asked to review a summary of appointments captured during the study time period by the EHR. Their feedback was designed to identify particular types of encounters/specialty types that are not captured completely and missed encounters across all divisions. Parents were asked to identify the frequency and scope of services they received outside of the hospital system and its integrated delivery providers. The interviews began with broad, introductory questions to create a relaxed atmosphere and to facilitate answering questions without face-to-face contact. A complete list of the EHR interview questions can be found in Table 1. The interview continued with open-ended questions about familiarity and experience with the EHR. The interview then covered capture of appointments, as well as the use of the patient portal. To conclude, the interviewer asked for suggestions from the parents for possible improvements in the EHR and patient portal to enhance their interaction and improve their children’s clinical experience. The interview took 50–60 minutes to administer, depending on the participant’s knowledge of the EHR and frequency of medical encounters. All interviews were completed in one telephone call. Parents were thanked for their time, and sent a gift card for their participation.

Table 1.

Parent Interview Questions

Interview Questions
How familiar are you with the electronic health record (EHR)?
How did you learn about the EHR?
How has the EHR changed your experience of care?
Is most of your child’s care being captured in the EHR? Do you receive care in another health system?
How familiar are you with the patient portal? (At this medical center we call it MyChart.)
How do you use MyChart?
Is there anything you would do to change MyChart?
How concerned are you about confidentiality and the EHR?
Can you think of any way the EHR and portal could improve you and your child’s medical experience?
Is there anything else about the EHR and you child that you think I should know?

Data analysis

Each interview was transcribed verbatim and then independently analyzed by two of the investigators (R.B and A.S) to identify themes that emerged from the transcripts. Segments of transcripts ranging from a phrase to several paragraphs were assigned codes based on a priori (i.e., based on questions in the interview guide) or emergent themes. Inter-rater reliability was assessed for a subset of one-third of the participants; there was 100% congruence in thematic identification. The same two study team members then met to review their findings. Identified themes showed high concurrence between the investigators. Themes were compared to look for trends. Thematic saturation was reached at 9 participants. Parents’ reports of benefits and barriers to the use of EHR were captured and quantifiable results in the form of tallies were available for some variables.

Results

Six complementary themes emerged from the parent’s responses: Familiarity and exposure to the EHR, changing experience of care, MyChart use, patient/EHR/portal interaction, Interoperability, and Mother as Care Coordinator.

Thematic issues

Familiarity and exposure to the EHR

The participants’ familiarity with the EHR was split. While four of the participants responded that they were very familiar with the EHR, three were not familiar at all. The six respondents who had familiarity with the EHR reported its introduction through multiple venues including seeing it used at a medical appointment (3), using it to request medical records (2), have a physician mention it (1), or working with it as part of her job (1).

The EHR changing experience of care

The descriptions of changes in care included a more streamlined approach with fewer complications when making an appointment, easier and faster medical record access, increased sharing of medical information across providers in the children’s hospital system with more clinician awareness of the type, complexity, and frequency of treatment sought without the parent having to verbally introduce her child’s medical history. Three mothers specifically noted the ease of electronic prescriptions and the ease of arriving at the pharmacy to find a completed prescription that had also met insurance formulary guidelines. Five of the respondents particularly noted improved awareness of their children’s care, as long as the care was within the specific hospital system, but that the sharing of information did not occur with either providers outside the system, particularly among behavioral specialists, or with insurance companies. Two (22%) felt the introduction of the EHR had not changed care at all. Specifically, one parent responded that most providers were not taking a broad view of her child, which she thought would occur given the provider’s ability to immediately access a more complete patient history. The parent emphasized she wished the providers would take a broader view of child’s condition and the treatment he was receiving. Four of the participants said that they were not concerned about issues of confidentiality, four were non-committal, and one was concerned records were susceptible to breach.

MyChart use

The participants were less familiar with MyChart, which is the Epic EHR’s linked patient portal providing secure messaging, appointment scheduling, result reporting, and health information. Only one respondent was currently signed up and using the portal; two other mothers were registered but reported only limited interaction with the portal. The one user made and tracked appointments in MyChart, reviewed her child’s record, and sent messages to the doctor within the portal. Of the six nonusers, an additional two were familiar with the idea of a portal, but from their own experience as a patient rather than using it for their children. In fact, both were very enthusiastic about using it for their own care and used it to check lab results and make appointments but were not interested in MyChart for their children. Parents explained they did not use the portal because it was difficult to register, requiring a two-step, in person process to gain access. Once they did have access, they reported losing their password, which also had to be reset using a two-step system. Once on the portal, they found it was not easily viewed on a smart phone and it was not consumer-friendly. Rather, steps such as deleting secure messages were difficult to do and they found the screens to be cluttered and difficult to read.

Suggestions for improved patient/EHR/portal interaction

There was no shortage of parental suggestions for improvements, especially to MyChart, that would increase their use of the tool. The first was to have a smart phone application for MyChart. Many of the mothers expressed frustration that at this point, they had to log into the portal using a computer rather than by smart phone. Having smart phone access would allow them access to manage the calendar or send a message to a caregiver when they might have a few minutes at school pickup or during a sports practice. They also noted they would like the option to have a real-time conversation with their child’s multiple providers – similar to something like Skype or Facetime – within the secure portal, to discuss interdisciplinary treatment. Other additional improvements would be more rapid access to lab results (3 respondents), a family calendar, and a single push button to request medical records. Current limitations barring or reducing portal use include many emails on one issue which the users find hard to delete, the fact that it is hard to log in, and the lack of a robust patient education center, links to appropriate medical literature, or vetted websites. The number of weekly contacts with the medical system makes it difficult for the parents to use the portal. Five of the parents reported an average of more than three medical appointments a week. The mother with two children with ASD said a typical week can involve 15 appointments among her children, who have an additional chronic condition. Thus the number and variety of type of medical appointments challenges the scheduling system.

Interoperability

Five of the participants drew upon their child’s treatment in another medical system to illustrate adaptations that might be made in the current system’s logistics, as well as to point out limitations within the Epic EHR. Those parents who also subscribe to a behavioral electronic data collection system such as Autism Tracker Pro and ABC Data Pro, [which are not necessarily required to meet Health Insurance Portability and Accountability Act (HIPPA) requirements as those associated with an EHR], reported getting more provider emails, finding the interface to be more easily accessible, receiving frequent emailed progress notes (4 respondents), and welcomed the ability to share information with providers across multiple clinical systems. They particularly liked being able to share information more easily with their children’s schools, as well as with other behavioral providers. When the participants were asked to match their children’s medical appointments versus what was captured in the hospital EHR, it became apparent that because of logistics, insurance restrictions, and personal choice, nine of 10 were receiving treatment outside of the hospital system. Thus, the information currently captured in the hospital and integrated delivery system EHR results in a partial data capture of the true type and volume of medical utilization associated with pediatric patients with ASD.

Mother as Care Coordinator

An unanticipated theme was that of the mother functioning in the role of care coordinator and what that means for the EHR and related patient portal. Many of the respondents (6) described years of laboriously requesting paper copies of medical records for other care providers, schools, insurance, and even entry into developmental programs sponsored by social agencies. Most referred to the hard-copy binder that they carried (and sometimes still carry) to their children’s appointments and would welcome a comprehensive, secure alternative to this approach. In order to replace hard copies, the parents would need “on demand” evidence of appointments attended for school absences, as well as for insurance requirements. They would need a document and record management that would allow the capture of information (including reports and treatment notes) from all of the members of their child’s care team. One mother described the idea of an electronic version of notebook divider tabs on which she would click to get the needed information according to provider.

The number of participants whose responses matched each theme is captured in Figure 1.

Figure 1.

Number of Parents of Children with ASD Endorsing Themes about the Electronic Health Record

Discussion

This paper provides one of the first examinations of use of and attitude toward the EHR and patient portal from the perspective of parents of children with ASD. These interviews provide insight into the parental caregivers’ perceptions of the experience and modifications to clinical care that have resulted from inclusion of the EHR in clinical practice. In general, parents were enthusiastic about the introduction of the EHR and felt it has made medical record access easier, facilitated prescriptions, was streamlining appointments – especially providing patient history, and sharing medical conditions and treatment information among providers. While generally positive about the EHR, the parents indicate several adjustments need to be made before they would be able to abandon their hard-copy binders as their primary instrument for managing their children’s care. As other studies have noted, one of the major issues remains that of interoperability. Not being able to share treatment approaches and outcomes with the multitude of providers that are part of their children’s care team is a significant limitation. When compared to the interoperability of behavioral trackers and portals such as Autism Tracker Pro and ABC Data Pro, the EHR, particularly the patient portal is seen as less flexible and less useful in serving as an easily accessed repository for information and an instrument for sharing treatment information.

The minimal use of the patient portal and the reported obstacles to use are important findings of this study. The rate of patient portal adoption, with 33% of participants registered to use MyChart, is similar or somewhat lower than the rates reported elsewhere. (21,23) The higher rates of adoption seen in studies by Byczkowski et. al, Ketterer et al, and Tom et al. may reflect that the portals they studied were developed in- house specifically for pediatric patients rather than using an off-the-shelf application for an EHR designed primarily for adult use. However, the use of a structured interview in our case indicated even registered participants are unlikely to use the portal which illustrates that registration is not utilization. These data suggest the patient portal may need additional modifications for ease of use in the pediatric environment, especially in cases of chronic conditions that require multidisciplinary care. Interestingly, although some parents did not report thinking of, let alone using, the patient portal for their children, they do use the tool for their own care. Thus, two groups emerged. There were parents who were willing to use the portal, but did not find it enhanced or streamlined the care for their child and the majority who do not use a portal under any circumstance. While the word training was never used, the parents did describe the portal as being difficult to use and having limited capabilities. Of note, is that one user who reported using the portal frequently and for several different types of tasks also worked for the hospital system. As part of her employment, she had received extensive EHR training and through the nature of her daily tasks understood how the portal connected to various segments of medical care. Other parents described the use of the portal as “taking too much time.” It either took too much time to register, to obtain a new password, or to try to scroll through messages. The services it offered in return such as scheduling for appointments were seen as easier by making a telephone call. The screen was too complicated to see on a smartphone. Thus, the patient portal is not regarded as being consumer friendly. Unlike many online shopping applications or airline portals where the customer would rather interact by computer, or increasingly tablet and smartphone, rather than speaking to a human, the patient portal is still regarded as making the interaction more complicated rather than simpler.

This study has several important limitations. Because of the small sample size, caution should be used before generalizing the findings to other groups. In addition, the study sample was restricted to individuals who had already self-identified as being interested in participating in research, indicating their enthusiasm for potential solutions. While it may be a limitation that only mothers participated rather than the full complement of potential care givers, it is established that mothers are usually the coordinators of children’s health, especially of chronically ill children.(24)(25) The study also illustrated that not all patients with ASD who live in San Diego County receive their treatment either solely or primarily from the tertiary academic pediatric health system and the medical utilization would be underreported if the EHR from this institution were the only source of information. Despite these limitations, this qualitative research has been useful for generating hypotheses, but analysis of the impact of the EHR and patient portal on enhancement of care and patient-centered outcomes will need to be tested using comparative effectiveness research with measurement of the use of the portal and health outcomes.

Conclusions

This study found participating parents have mainly positive feelings about the EHR but have yet to use the patient portal consistently or to think it might make their clinical experience or care coordination easier. Overcoming logistical issues currently dampening the potential of a portal to increase access to care and improve healthcare outcomes for children with chronic conditions, such as ASD, will be an important direction for future research.