Parent Perceptions of Real-time Access to Their Hospitalized Child’s Medical Records Using an Inpatient Portal: A Qualitative Study

In this qualitative study, semistructured in-person interviews were conducted with parents of children hospitalized on a general medical surgical unit in a tertiary care children’s hospital in the Midwest starting in September 2016. On this 24-bed unit, children with acute or chronic conditions are admitted to 1 of multiple pediatric services, including hospitalist, subspecialty, surgery, or rehabilitation. As standard practice on admission, nurses give parents of hospitalized children <12 years old a tablet computer (Apple iPad 32 GB; Apple Inc, Cupertino, CA) to use throughout the hospitalization. This tablet includes an online inpatient portal application linked to real-time clinical information from their child’s EHR. On discharge, tablets are collected, cleared of data, and reissued to subsequent parents.

In this study, available English-speaking parents were eligible and approached if their child had been admitted to any bed on the unit for >24 hours. Parents who did not speak English were excluded because of limitations of the inpatient portal technology to provide only English-language content. Parents of children 12 years and older were excluded because of legal limitations on the ability of parents to access certain adolescent health information.

At this organization, an EHR (Epic Systems) has been used since 2008, an outpatient portal (MyChart) since 2009, and an inpatient portal (MyChart Bedside; Fig 1) since 2015. Linked to hospital EHR data, this inpatient portal application is given to parents on a hospital-owned tablet. It provides parents with real-time access to clinical information about their child’s hospital stay. The inpatient portal’s features and hospital staff expectations are outlined in Fig 1, including an orientation to features, expected staff response times, release frequency of laboratory test results, and educational content. Drug testing, pregnancy, tumor markers, culture, and radiology and pathology test results are not released to the inpatient portal. During this study, tablets did not include access to the Internet more broadly or other applications.

We constructed and piloted a semistructured interview guide, which can be accessed in the free online toolkit.²⁴  Interview domains and example probes are included in Table 1. Interview questions were included to capture parent and child characteristics, including parent sex, number of previous child hospitalizations (excluding birth), number of days currently hospitalized, previous outpatient portal use, whether they were shown how to use the inpatient portal, and average daily use.

A convenience sample of parents was recruited on weekdays from 9 am to 12 pm, when research staff was available. Eligible parents were identified by the unit secretary through the EHR, approached by the nurse, and offered a study information sheet. A researcher (M.M.K. and P.L.T.H.) approached parents willing to learn more about the study and obtained informed consent. Consenting parents were interviewed in a location of their choice (at the bedside or in a private conference room). Researchers (M.M.K. and P.L.T.H.) met regularly to review emerging themes, and recruitment continued until thematic saturation (the point at which no new themes emerged despite additional interviews²⁵ ) regarding why parents used the inpatient portal was reached. Interviews were audio recorded and transcribed verbatim. Audio recordings and any identifying information unintentionally collected were deleted after transcription was complete. The University of Wisconsin-Madison Institutional Review Board of the study site approved this study.

Interview transcript data were uploaded to DeDoose (www.dedoose.com), which is software that is used to assist with qualitative data management and analysis. Parent-reported characteristics were analyzed by using descriptive statistics. Interview text was systematically categorized into themes by using a standard inductive, qualitative content analysis approach.^26,27  Three researchers trained in qualitative methods (M.M.K., P.L.T.H., and A.S.T.) independently reviewed data and then generated the thematic coding scheme through consensus. Interview data were then independently coded, and discrepancies were again resolved through consensus.

Of 16 approached, 14 parents consented and completed an interview. Interviews each lasted from 24 to 65 minutes. Parent and child characteristics are shown in Table 2. Parents were predominantly mothers (86%), had access to the inpatient portal for 2 to 20 days (mean: 6 days; median: 3 days), and reported using it an average of 2 times per day (range: 1–5 times per day).

Five themes emerged regarding parent motivations for accessing information within the portal: (1) monitoring their child’s progress, (2) feeling empowered and/or relying less on staff, (3) facilitating communication and/or decision-making on rounds, (4) ensuring information accuracy and/or providing reassurance, and (5) aiding memory. Themes and representative quotes are shown in Table 3.

Parent quotes representing their perceptions of the usefulness and suggestions for improvement of each portal feature are show in Table 4. Parents made multiple suggestions, including modifications to the portal interface (eg, highlighting medication changes), content (eg, releasing more information and simplifying educational materials), and explanation of features (eg, clarifying expectations for where messages go and response expectations). Parents recognized that it was possible that they could see laboratory test results before providers but didn’t think that the release frequency of results should be changed: “I don’t mind that. I think that’s kind of the nature of [it]. I’m focusing on one thing, and they’re focusing on my child and other children” (Parent A).

Thirteen parents recommended that the hospital continue to offer parents access to the portal. Although they emphasized that parents might use the portal differently, interviewees thought providing parents with the option was important: “Some people will probably use it more, and maybe people will use it less, but I think access is what is most important—just getting it to them and saying, ‘This is for you, use it as you will.’ I think it’s a great tool” (Parent H). The remaining parent was positive about its potential but had multiple suggestions: “Right now, it has a nice foundation to be really useful. This is clearly just kind of pulling a little bit from his current record, and [staff] are not being interactive with it. I think it would be nice to have the nursing staff really be on board and talk about it and…be the ones to sit there and kind of advocate for it” (Parent A). Other parents wanted the hospital to continue to use the portal but requested increased access to information: “It would be nice to have access to all of his chart, not just selective pieces” (Parent B).

Parents were open to additional portal features being considered by the hospital.

Parent participants were willing to use the portal to answer questions currently asked by nursing staff on admission (eg, child’s vaccination status and chicken pox exposure) and about their experience in the hospital. Some parents preferred to use the tablet to answer these questions: “If we can just read it ourselves, we can get it done a lot quicker” (Parent D) and “[w]ould more likely respond [to a tablet discharge survey] than getting a piece of mail” (Parent G). Other parents had reservations about completing nonemergent tasks on the tablet: “It might not be the best idea because when you are being admitted, that’s usually not the thing on your mind” (Parent K) and “[answering discharge questions] might be hard because [we are] also trying to make sure we’ve got everything” (Parent D).

Of 14 parents, 13 were interested in having access to their child’s inpatient doctor’s notes in the portal: “I don’t know that doctors necessarily keep it a secret, but in my son’s entire medical history, I’ve only had one doctor really turn the screen to me and sit there and say like ‘Here’s what we’re seeing, here’s what’s happening.’ So, if I could see things like [notes] in here, that would be amazing” (Parent A). Parents suggested that notes would improve their ability to remember their child’s plan and improve understanding: “Sometimes talking is different than writing. Sometimes I will forget the point. [With notes], we’ll know where’s the problem and what’s the next step” (Parent F) and “When you read, you can understand it much better” (Parent C). Others suggested that they would like to refer to notes when they were unavailable during rounds: “I wasn’t here [during rounds]. So, if they say the doctor’s notes are on there, I could be able to read them and see what [the doctor’s] suggesting” (Parent J). Other parents had reservations: “It could be too much information in the wrong hands” (Parent L) and “I don’t know how comfortable [doctors] would feel. It may feel like an invasion of [doctors’] privacy” (Parent H).

Parents would consider using the portal’s messaging feature to report a concern, mistake, or error: “I think that would be a nice way to [report concerns]…it’s still linked to you, but you can think through what you’re saying, and maybe present [it] a little bit clearer” (Parent L). Others would prefer to report mistakes/errors in person because of concerns about communication timeliness and/or the potential of being misunderstood through online communication: “I do prefer a face-to-face [communication]…everybody knows if you really want to get misunderstood, then you send a message” (Parent B).

This study is the first to reveal why parents used an inpatient portal during their child’s hospitalization. Parents used it to access information, which facilitated their ability to monitor their child’s progress, remember the care plan, ensure information accuracy, and communicate during rounds. The portal also provided a sense of empowerment and the ability for some parents to feel less reliant on staff. Participants recommended that the hospital continue to offer parents the portal and had multiple suggestions for improvement, such as increasing the amount of their child’s EHR information that is released. These findings could help vendors, health care organizations, researchers, and policy makers optimize inpatient portals and their implementation and inform next steps toward rigorous evaluation of the effects of their use.

Our findings complement those of studies conducted with adults who were hospitalized and their caregivers.^11,12,14  In 1 qualitative study, adult inpatients similarly used an inpatient portal to obtain information to monitor, understand, remember, engage in, and ensure the safety of their care.¹⁴  In fact, authors highlighted the potential for adult patients to find errors in their medication list using their inpatient portal¹⁴  (a finding reinforced through our study). Children who are hospitalized are particularly vulnerable to medical errors,²⁸  and parents play an important role in identifying and reporting errors.²⁹  By providing parents with access to information through inpatient portals, they may be able to better identify potential errors and alert providers, who can take action and prevent harm. It is important to note, however, that parents were less comfortable with using the portal as a mechanism to report their safety concerns.

Overall, parents’ experiences with the inpatient portal were positive, and their suggestions were focused on expanding (as opposed to fixing) portal functionalities. Parents desired more information, specifically the ability to view their child’s physician’s notes. This sentiment has been echoed by adult inpatients in other studies.^6,12–14  OpenNotes is an international movement in which providers are encouraged to give patients online access to their notes,³⁰  which routinely detail the patients’ diagnoses, progress, and treatment plan. Results from studies of adult patients in the ambulatory setting reveal that providing access to notes may help patients remember their care plan, ensure information accuracy, and feel more in control of their care.^31–33  However, many physicians fear that sharing their inpatient notes will result in unintended negative consequences,³⁴  such as disclosure of information that could lead to patient anxiety, confusion, anger, and loss of trust and privacy and/or increase litigation. These concerns are heightened in pediatrics with the complexities of protection of children and of access for adolescents.^35,36  Future research is needed to evaluate how to optimally share physician notes through inpatient portals to support parents as true partners in hospital care while mitigating negative consequences.

It was notable that parents did not have concerns about the possibility of seeing test results before their provider. To the contrary, parents used the portal to access test results and other information so that they did not have to rely as much on staff. Although directly releasing test results in patient portals appears to be valued by patients in the ambulatory setting³⁷  and may enhance their engagement, it has the potential to increase patient anxiety and health care use.³⁸  Our organization chose not to release certain laboratory test results, such as drug testing, pregnancy, tumor markers, and pathology results. Organizations may need to make such decisions, accounting for local context, to offset the potential negative effects of releasing this information directly to patients and families. The optimal types and timing of release of results through inpatient portals in the acute hospital setting is unknown and is an important area for investigation.

More than simply tools for displaying information, inpatient portals could be used to capture parent-reported data (eg, admission and discharge questionnaires) and facilitate more meaningful parent-provider communication, thus having the potential to help parents become more effective partners in their child’s care. Although the expansion of portal functions could further foster parent engagement, it should be approached carefully and after consideration of privacy protections, usability testing,³⁹  and integration within complex hospital workflows and processes (eg, rounds). The impact of inpatient portal use on provider workload and health services use (eg, length of stay, readmissions, outpatient engagement, and visits) and costs associated with technology implementation and maintenance also need to be quantified.

Whether the use of inpatient portals ultimately translates to demonstrable improvements in meaningful health constructs is largely unknown. Among adult patients, interventional studies used to evaluate the effect of inpatient portal use on process and outcome measures are emerging with mixed results. In the only published controlled trial used to evaluate the effect of inpatient portal use,⁹  adult inpatients with access to the portal had improved knowledge of provider names and roles compared with those receiving usual care. However, there was no significant difference in patient engagement or knowledge about planned medications, tests, and procedures. In another study, portal implementation in an adult ICU was associated with a significant increase in patient satisfaction and reduction in adverse events but no change in care plan concordance.⁴⁰  Future comparative-effectiveness research in the pediatric setting should be used to clarify the effect of inpatient portal use on parent knowledge, engagement, and experience; parent-provider communication; shared decision-making; and patient safety (eg, safety perceptions, diagnostic errors, and adverse drug events).

This study had several limitations. We evaluated the use of 1 inpatient portal by English-speaking parents of children hospitalized on a single pediatric medical surgical unit, which limit the generalizability of findings. However, these findings may be useful for those organizations that are considering implementing this commercially available portal or for the 140 organizations that are already committed to using it (J. Campbell, personal communication, 2018). The design and use of inpatient portals by non–English-speaking patients and caregivers and hospitalized adolescents are important areas for future study. Interviews were completed with a convenience sample of parents available on weekdays, which may reflect a more engaged population of parents. Although we collected participant information on previous outpatient portal use, we did not capture their age or experience with technology in general, nor did we link their reported use to actual use using tablet data. Identifying parent portal use timing and trends and parent and child characteristics associated with use is an important area for future research. Interviews were conducted until thematic saturation regarding why parents used the portal was reached. Thus, this qualitative study was not designed to detect differences in parent use or perceptions across characteristics (eg, previous ambulatory patient portal use).

Although engaging parents in the care of their child improves health outcomes,⁴¹  limited evidence-based interventions exist to truly engage parents as partners in the inpatient setting.⁴²  Providing parents with real-time clinical information during their child’s hospitalization by using an inpatient portal may enhance their ability to engage in the caregiving tasks endorsed as essential to improving pediatric patient safety and the quality of hospital-based care.

We thank parent portal users, unit staff, and the portal implementation and steering committees for their valuable feedback and support.