Caregiver and Health Care Provider Perspectiveson Cloud-Based Shared Care Plans for ChildrenWith Medical ComplexityArti D. Desai, MD, MSPH,a,b Elizabeth A. Jacob-Files, MA, MPH,b Julia Wignall, MA,b Grace Wang,c Wanda Pratt, PhD,d Rita Mangione-Smith, MD, MPH,a,b
Maria T. Britto, MD, MPHe
A B S T R A C TOBJECTIVES: Shared care plans play an essential role in coordinating care across health careproviders and settings for children with medical complexity (CMC). However, existing care plansoften lack shared ownership, are out-of-date, and lack universal accessibility. In this study, we aimedto establish requirements for shared care plans to meet the information needs of caregivers andproviders and to mitigate current information barriers when caring for CMC.
METHODS: We followed a user-centered design methodology and conducted in-depthsemistructured interviews with caregivers and providers of CMC who receive care at a tertiary carechildren’s hospital. We applied inductive, thematic analysis to identify salient themes. Analysisoccurred concurrently with data collection; therefore, the interview guide was iteratively revised asnew questions and themes emerged.
RESULTS: Interviews were conducted with 17 caregivers and 22 providers. On the basis ofparticipant perspectives, we identified 4 requirements for shared care plans that would help meetinformation needs and mitigate current information barriers when caring for CMC. Theserequirements included the following: (1) supporting the accessibility of care plans from multiplelocations (eg, cloud-based) and from multiple devices, with alert and search features; (2) ensuringthe organization is tailored to the specific user; (3) including collaborative functionality such as real-time, multiuser content management and secure messaging; and (4) storing care plans on a secureplatform with caregiver-controlled permission settings.
CONCLUSIONS: Although further studies are needed to understand the optimal design andimplementation strategies, shared care plans that meet these specified requirements could mitigateperceived information barriers and improve care for CMC.
aDepartment ofPediatrics, University of
Washington, Seattle,Washington; bSeattleChildren’s Research
Institute, Seattle,Washington; dDepartmentof Biomedical and Health
Address correspondence to Arti D. Desai, MD, MSPH, Department of Pediatrics, University of Washington, 2001 Eighth Ave, Suite 400, M/SCW8-5, PO Box 5371, Seattle, WA 98145-5005. E-mail: [email protected]
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Supported by a Patient-Centered Outcomes Research Mentored Clinical Investigator Award from the Agency of HealthcareResearch and Quality under award K08HS024299 (Dr Desai).
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
Dr Desai conceptualized and designed the study, collected data, participated in data analysis, and drafted the initial manuscript;Ms Jacob-Files and Ms Wignall collected data and participated in data analysis; Ms Wang participated in data analysis; Drs Pratt,Mangione-Smith, and Britto participated in the design of the study; and all authors reviewed and revised the manuscript, approvedthe final manuscript as submitted, and agree to be accountable for all aspects of the work.
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Care coordination is a critical function ofhigh-quality health systems to meet thehealth service and information needs ofpatients and families.1–3 This function isparticularly important for children withmedical complexity (CMC), who on averagereceive care from 13 outpatient healthcare providers representing 6 distinctsubspecialties.4 A central component of carecoordination is a multidisciplinary sharedcare plan.5–7 A care plan is a single,comprehensive tool containing the child’spertinent medical history, medication list,appointments, goals of care, and actionitems that is developed in partnership withfamilies and providers.8 These care planshave the potential to strengthen family-provider relationships, enhancecommunication, and improve child healthoutcomes.8 Furthermore, as components ofmultifaceted interventions, care plans havebeen associated with high-quality careexperiences and improved patient-reportedoutcomes in pediatric and adultpopulations.9
Care plans are typically in paper formatand are created by using standardizedtemplates, taking the form of loose sheetsof paper, notebooks, binders, or documentsscanned into the electronic medicalrecord.8,10–12 Researchers in qualitativestudies explored the use of care plansby CMC families, and providers highlightedseveral limitations in their design andimplementation that impede routineuse.10,11,13 These limitations include a lackof shared ownership, difficulty modifyingthem in real time, and a lack of universalaccessibility from various devices.Cloud-based care plans (ie, care plans thatare stored online and are available tousers on demand via the Internet) mayprovide an efficient platform to supporttheir adaptability and accessibility in realtime.14–18 However, little is known in termsof how families and providers perceiveinformation sharing in the cloud andhow they would define a cloud-basedplatform. Furthermore, there is a paucityof evidence that demonstrates howfamilies and providers would initiate,review, update, and share these care plansacross settings to facilitate carecoordination.17–21
To provide such evidence, we used user-centered design as an innovative approach,both to understand the optimal design andimplementation strategies for shared careplans and to ensure that they are consistentwith the needs, constraints, and previousexperiences of relevant stakeholders.19,22–26
Through a user-centered design process,stakeholders are actively engaged initerative cycles of developing newtechnologies by doing the following:(1) identifying their needs and establishingrequirements for the technology,(2) developing designs, (3) building interactiveversions of the designs, and (4) evaluatingdesigns.27 In this study, we aimed to conductthe first step of the user-centered designprocess by understanding the needs ofcaregivers (parents or legal guardians) andhealth care providers who care for CMC andto establish requirements for shared careplans that would mitigate current barriers tomeeting these information needs.
METHODSStudy Design and Population
Consistent with user-centered designmethodology, we used pragmatic inquiry tomeet the study objectives. Pragmatic inquiryinvolves eliciting perspectives of diversestakeholders on the basis of real-worldexperiences to guide future interventionsand action.28 Such an approach is commonlyused as the first step in the user-centereddesign process to identify the needs andrequirements of relevant stakeholders.
We recruited English-speaking caregiversand providers of CMC 0 to 18 years of agewho were hospitalized at a tertiary carechildren’s hospital between March 2016 andNovember 2016. We identified CMC using aflag in the child’s medical record that isbased on predefined criteria developed bythe institution. Trained research staffapproached eligible caregivers during thechild’s hospitalization using a standardizedrecruitment protocol. We recruitedproviders (eg, emergency department [ED]providers, primary care providers [PCPs])caring for CMC enrolled in the study using astandard e-mail template. We intentionallydid not interview individuals with expertisein clinical informatics or informationsecurity at this stage because our aim in
this study was to foster an open palate ofideas to meet caregiver and provider needs,rather than understand the feasibility ofthese ideas within current healthinformation systems.
We used purposive sampling, a qualitativestrategy to recruit eligible participantson the basis of their demographiccharacteristics to maximize participantdiversity and the range of perspectives.As data analysis progressed, we also usedtheoretical sampling to recruit differenttypes of providers (eg, subspecialists,nursing staff) as new questions or areas ofexploration emerged from the studyfindings.29 We recruited and enrolledcaregivers and providers until the researchteam deemed that a diverse array ofperspectives was obtained, and well-definedthemes emerged from the analysis.
Data Collection
In-depth, semistructured interviews led by 1of 3 research team members (A.D.D., E.A.J-F.,and J.W.) were conducted either in thechild’s hospital room, child’s home, a privatehospital meeting room, provider’s office, orby telephone for participants who were notlocal at the time of the interview. Interviewslasted ∼1 hour, were audio recorded, andtranscribed. We used open-ended questionsand probes to elicit caregiver and providerexperiences with current health informationprocesses and their perspectives onexisting care plans and cloud-based careplans (Supplemental Information).Participants were also asked to drawdesigns of their recommendations for thesecare plans. We revised interview guidesweekly as new themes and areas of inquiryemerged from the data analysis.Participants completed a demographicsurvey after the interview and wereprovided a $100 gift card.
All study procedures were approved by theSeattle Children’s Hospital InstitutionalReview Board.
Data Analysis
We used applied thematic analysis, aprocess that is used to identify the mainideas from participant responses, combinesimilar ideas into themes, and organizethese themes into actionable strategies that
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may be useful for solving practicalproblems.30 To identify main ideas frominterview transcripts, 3 authors (A.D.D.,E.A.J-F., and J.W.) first read each transcriptin its entirety to gain insights into broadconcepts. Next, at least 1 of these authorsreread each transcript, highlightedexcerpts, and applied codes to each idea inthe excerpt. Each transcript was thenreviewed by at least 1 of the other authors,and additional codes were applied to eachexcerpt if needed. During weekly meetingsthroughout the data collection period, these3 authors initially reviewed codes, resolvedcoding questions, and developed acodebook. As interviews, analysis, andcodebook development progressed, weeklymeetings were focused on combining codesinto themes and organizing themes intocategories. Data analysis was facilitated byusing Dedoose version 7.0.23 qualitativesoftware.31
RESULTSDemographics
The study sample consisted of 17 caregiversand 22 providers. In Table 1, we outlinedemographic characteristics of theparticipants. Demographic characteristicsof children are presented in SupplementalTable 5.
Overview of Study Findings
We organized the themes we identified into3 main categories: (1) information needswhen caring for CMC, (2) barriers tomeeting these information needs in thecurrent system, and (3) requirements forcare plans to meet the information needsof all stakeholders and to mitigatebarriers. Regarding information needs,caregivers and providers noted thatinformation should be centralized, timely,consistent, and helpful when caring forCMC (Table 2). Participants also highlightedseveral barriers that currently exist tomeeting these needs (Table 2). On the basisof these perceived needs and barriers, weidentified 4 requirements for care plansthat could help to meet needs and mitigatebarriers: accessible, user-centered,collaborative, and secure. Eachrequirement is presented in more detailbelow, with illustrative quotes used tohighlight similarities and differences in
TABLE 1 Caregiver and Provider Demographics
Caregivers Providers
Age, y, No. (%)a
#35 7 (41) 7 (32)
36–45 6 (35) 7 (32)
.45 4 (24) 8 (36)
Female sex, No. (%)a 16 (94) 17 (77)
Race and/or ethnicity, No. (%)a
White 14 (82) —
Hispanic 2 (12) —
Caregiver education, No. (%)a
High school graduate or GED 3 (18) —
Some college or 2-y degree 6 (35) —
4-y college degree 4 (24) —
.4 y college 4 (24) —
Type of provider, No. (%)a
Complex care provider — 2 (9)
PCP — 6 (27)
ED physician — 4 (18)
Inpatient pediatric resident — 1 (5)
Subspecialty physician — 3 (14)
ED nurse — 1 (5)
Inpatient floor nurse — 1 (5)
School nurse — 1 (5)
Home health nurse — 1 (5)
Care coordinator — 1 (5)
Case manager — 1 (5)
Clinic location of provider, No. (%)a
Main hospital — 13 (59)
Regional — 8 (36)
Out of state — 1 (5)
Provider y of practice, No. (%)a
0–5 — 7 (32)
6–10 — 5 (23)
11–20 — 4 (18)
.20 — 6 (27)
Mean provider comfort level caring for CMC(range)b
— 8.0 (3–10)
Provider uses EHR at main practice location,No. (%)a
— 19 (86)
Provider has access to main hospital EHR, No. (%)a — 18 (82)
Provider comfort level using EHR, mean (range)b — 8.9 (6–10)
Participant owns a smartphone, No. (%)a 16 (94) 22 (100)
Participant comfort level with smartphone appusage, mean (range)b
8.5 (2–10) 8.3 (2–10)
Caregiver endorsed having a care plan for thechild, No. (%)a
8 (47) —
GED, general equivalency diploma. —, not applicable.a Sum may not equal 100% due to rounding or participant preferred not to answer survey item.b Response options were on a scale from 1 to 10, with higher ranking indicating a higher comfort level.
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perceptions between caregivers andproviders in Table 3.
Requirement 1: Accessible
Caregiver number 6 said: “If there’s a way totie it all in with the computer system, wherea parent could say, ‘He’s got a care plan. He’sgot a special pre-op protocol that needs tobe followed.’ They could go, ‘Look. You’ve gota red flag here.’ Quick. Boom. It pops up.”
A key requirement for care plans isensuring quick accessibility wherever andwhenever users (ie, caregivers orproviders) need it. For where they need it,participants were open to accessing a careplan in the cloud because this wouldprovide a single version of the care planthat was available in a centralized locationregardless of where the child was receivingcare (ie, a “universal portal”). Theysuggested that a cloud-based care planshould be affiliated with a hospital system(as opposed to a personal cloud-basedhealth record) to enhance trustworthinessof information within the care plan. Hospitalproviders (inpatient or ED) stronglyrecommended that any care plan should belinked through the hospital electronic health
record (EHR) to find information in a timelymanner; however, the document does notneed to “live” within the EHR. Participantsalso request that care plans beelectronically accessible on multiple devices(eg, computer, smartphone). This wouldmitigate barriers of paper copies “gettinglost in the shuffle.” For example, caregiverscould share the care plan through an appon their smartphone to avoid the frustrationof repetitively sharing their child’s healthhistory. In addition, caregivers noted thatcare plans must have download and printcapabilities in case an Internet connectionwas unavailable or for users withoutsmartphones.
For when they need it, providersrecommended that care plans be availablebefore any health care encounter, so theywould have time to familiarize themselveswith the child’s unique care needs toefficiently guide the encounter. This featurewould alleviate the burden on caregivers tobe the “on-call historian.” Participantssuggested that electronic alert featurescould help meet this goal. For example,outpatient follow-up providers could receive analert when a discharge summary is available
to prepare for the follow-up visit. Participantsalso noted users should have customizablealert settings to avoid “alert fatigue.”
Participants emphasized that informationthey would like to share or find “in themoment” must be easily retrievable withinthe care plan. This requirement wouldalleviate the burden on caregivers toremember all of their child’s healthinformation and prevent providers fromhaving to “dig through” multiple folders ordocuments. Participants requested a robustsearch function to help meet this goal.This would give users the “10 000 ft view”(eg, problem list) and allow them to quickly finddetails regarding a particular event, action plan,or medication change without having to openmultiple programs, tabs, screens, or notes.
Requirement 2: User-centered
In the very front, executive summary,boom. That’s right here, and all thisother stuff is behind the scenes. Ifsomebody needs that, which they do, it’sjust not me, they can have all that stuff.But what I need, when its emergent, isright here in front of me. . .the three
TABLE 2 Caregiver and Provider Information Needs and Barriers When Caring for CMC
Information Needs Description of Need Perceived Barriers to Meeting Information Needs
Centralized Information should be stored in a single, centralizedlocation
Information stored in EHRs that are not accessible in all care settingsPaper copies are not always available or “get lost in the shuffle”Information needs to be retrieved from multiple sources or locationsInformation that lives “outside the system” is difficult to retrieve and makes
it difficult to know what events are occurring between health encounters“in the system”
Time-consuming for 1 provider to generate and maintain a single, comprehensive,up-to-date care plan
Burden of keeping information often falls on caregivers (“on-call historian”),which results in them having to share information repeatedly or worry aboutforgetting important information
Limited tools to help families organize vast quantities of health information
Timely Information should be available before health careencounters and easily retrievable
Information may not be available before the patient’s arrivalSlow transfer of information between care settings (eg, fax)Time-consuming to “dig through charts” to find relevant informationCritical information for emergency situations is difficult to find
Consistent Information should be consistent across care teammembers and care settings to “get everyone onthe same page”
Information is documented in multiple places leading to discrepanciesMultiple existing versions of the care plan leading to inaccuraciesInadequate documentation of rationale for provider recommendations or changes
to the plan of care
Helpful Information should help familiarize care teammembers with the child and provide managementguidance because CMC “do not follow thetextbook”
Current care plans use “1-size-fits-all” and may have too much information orhave missing information, depending on the care team member
Content may not be organized in a manner that is helpful for guiding specifichealth care encounters (ED visit versus follow-up visit)
Information is often not accessible by unfamiliar providers (lives in child’sprimary EHR only)
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TABLE 3 Illustrative Quotes From Caregivers and Providers Regarding Requirements for a Shared Care Plan
Requirement Caregivers Providers
Accessible
Accessible wherethey need it
“I’ve got my laptop, my tablet, [and] my phone, depending on where I’mat. Especially if I’m at the doctor or if they can’t access [the careplan] for some reason, which they should be able to, then I can fromthe phone. Then I wouldn’t have to have everything memorized.”(Caregiver 13)
“While it needs to connect to our EHR, it also needs to beaccessible for other caregivers. Outside hospitals also need tobe able to access it because they will see a lot of our kids fromAlaska or Montana. They’ll present to an outside emergencyroom and then get transferred to our hospital. We don’t wantto delay their care and things that they could start working onjust because they don’t have access to the care plan.” (Complexcare provider, provider 11)
Accessible whenthey need it
“Having a Web-based option where it’s not only readily available but itdoesn’t require the family to mention it to the provider so that theyknow it’s there. It would be great if there were some sort of alert orflag that could come up on a child’s record when he’s admitted to anemergency room. Whether it’s our local one or here. It says, ‘Alert,child has care plan. Click here.’ They don’t have to wait until theparent goes, ‘Oh yeah, by the way, we have a care plan.’ Or stumbleacross it on encounter 63 of 2000.” (Caregiver 7)
“If I could have [access] when she was coming in, gone on thecloud and had a password, and read that discharge summary,I think I would have been more prepared when I saw her, toknow what was going on with her.” (PCP, provider 2)
Find informationquickly withinthe care plan
“It would be nice to have things searchable. That’s another reason Istarted the blog [with his information], because I thought it wouldbe easier to search for things if I need to try to remembersomething.” (Caregiver 2)
“Do I need to wade through to page 37 to find the seizure actionplan? If I can type in something, enter, bam, it comes up rightaway, that would be useful. It would be very easy to come upwith, ‘How do I take care of this thing right now?’”(Subspecialist, provider 12)
User-centered
“I don’t feel like anyone is going to take the time to read a 6-pagedocument, so to serve both purposes [for ED providers versusinpatient providers], there would be a way to have a triage versionup front for acute crisis or first meetings. Basically, if you have 5 minor if you have an hour.” (Caregiver 4)
“It really depends [on] who it is for. It would be important to havecare plans for specific purposes. . .for the family, for theemergency room. The needs of the care plan really vary basedon the audience.” (Care coordinator, provider 20)
Collaborative
Team leader “I would have to say 1 of his rehab doctors [should be the team leader]because that’s where he spent the most time. That was the mostrecent experience. They had their hands on him. I wouldn’t say hisPCP because of my remote situation. In this instance, I would ratherhis rehab doctors to manage this piece of things. It would have to bea collaboration, of course.” (Caregiver 9)
“I like the idea of the [complex care team] because they’re a nicesynthesizer of all these different problems and specialties. Theyhave the 10 000-ft view of everything, whereas maybe thegastrointestinal specialists and the sleep doctor, maybe theydon’t see the whole picture as well. The [complex care team]knows everything that’s going on with him, so I feel confidentthat they have the most up-to-date information, because theyare in contact with this family so much.” (Inpatient pediatricresident, provider 1)
Contributors “[My role is] to check and make sure that everything’s correct. [And]when I need to add something, to make sure that’s correct as welland up-to-date. I think it needs to be checked, I would say at leastonce a month or depending on your child’s health. If you’re havingsome problems, then check it as often as you can and make surethat it’s okay.” (Caregiver 16)
“Maybe with cloud based, if the pulmonologist is changing theplan and we made it easy enough to change within the cloud-based system, they could go in and update it, and they wouldn’thave to update every section. They could just update theirparticular problem, which would mainly allow [the care plans]to be more up-to-date.” (Complex care provider, provider 11)
HIT system “The [doctor] updates what medication he’s on, what dosage he’s on,and they change something so that goes into the system, and it goesto part of the hospital that updates the care plan. They get an alert,and then updates have to be made within a certain time frame.”(Caregiver 5)
“I’d like to not have to have a whole lot of awareness of [the careplans] because what I’m doing as part of my clinical routinecare and my discussion with parents is automaticallypopulating into it. That is the most ideal basis. On a morerealistic basis, I would say I’d like to be able to enter in theinformation I need to and have it alert the people who it potentiallytouches every time I’ve made an update. Likewise, if somebody elsemakes an update that touches something to do with seizures, itpings me to let me know.” (Subspecialist, provider 12)
Messaging system “It would be good for the [home dietician] and [hospital dietician] to beable to communicate that back and forth about the best feedingplan. That would probably be easier, too, because I know thatdifferent providers don’t talk with certain in-home people. There’s acommunication barrier there. It would be easy to see the changesthat a doctor made and why, so that everybody can see what’s beenchanged, why, [and] what the plan is, so that they have anunderstanding, too.” (Caregiver 11)
“The way I envision it is that the communication is all in 1 place soother team members could see the communications that theywanted to, or you could include other team members in thecommunications. That way you’re not reinventing the wheel bytrying to communicate different ways with different people orcc’ing people in e-mails.” (PCP, provider 5)
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things I got to worry about. . .this kid isdifferent from a normal kid because ofthis, this, and this. –ED provider 3
Participants noted that care plans shouldcontain content relevant to their particularrole, and the content should be organizedin a manner that addresses the user’sspecific needs. This requirement wouldenable users to quickly retrieve theinformation they need to efficiently care forthe child. The formatting adaptability of anelectronic care plan would meet thisrequirement, in which the interface woulddiffer on the basis of the user’s role,although the back-end data infrastructurewould remain the same. In Fig 1, wepresent 2 examples of content a caregiverand provider would prefer to have in acare plan and how they would organize it.The content in Fig 1 was representative ofthe main areas discussed by the majorityof participants. Participants also discussedhow they would prioritize different types ofcontent given time constraints and howthey would use layers via hyperlinks ortabs to access lower priority content.
Requirement 3: Collaborative
If there was truly a shared, live, activecare plan, and all of the docs involved inhis care could contribute to a runningcare plan, that would be amazing. But itneeds to be easy for everyone to usebecause it takes time to do this kindof updating, time to document whatconversations happened and have itbe accurate so that it’s useful.–Primary care provider 6
We identified collaboration among careteam members as a key requirement togenerate and maintain information within acare plan. Collaboration was perceived topromote trustworthiness of the care planbecause multiple care team members couldprovide content related to their area ofexpertise and review the content foraccuracy. Participants emphasized thatcare plans stored in the cloud would makea collaborative model feasible becausemultiple care team members could sharethe responsibility of routinely updatingthe care plan in real time. Role clarityamong care team members and effectivecommunication were identified as 2 keyfeatures of a collaborative model for careplans.
To meet the need of having consistentinformation across care team members andsettings, we identified 3 key roles: a teamleader, contributors, and the healthinformation technology (HIT) system(Table 4). For “team leader,” respondentsexpressed different opinions about whichcare team member(s) should fulfill this role.However, there was a general consensusthat the team leader(s) should haveexpertise in complex care, understand the10 000 ft view, and have frequent interactionswith the child. The team leader(s) shouldbe clearly identified at all times, andselecting the team leader should be ashared decision between caregivers andproviders based on the individual orteam that best meets these characteristics.For the role of contributors, caregiversand providers were unified in theirperspective of which care team members
should fulfill this role because these wouldbe individuals who “own” specific aspectsof the child’s care (eg, subspecialists,care coordinators, caregivers, etc).Participants also highlighted that the HITsystem serves an important role inmaintaining an updated and accuratecare plan through seamless data transferfunctionality (eg, auto-population) anduser reminders to review or updateinformation.
A collaborative model for care plans alsorequires seamless communication betweencare team members. Therefore, participantsrecommended that any care plan shouldcontain a secure messaging system toenable care team members to askquestions, clarify the rationale behinddecisions, or resolve conflicting informationwithin the care plan. This could serve as a“mini virtual care conference” in real time,which caregivers highlighted would helpteam members “get on the same page”about their child’s evolving care plan. Thiswould also decrease the burden oncaregivers to constantly relay informationbetween providers and allow interproviderconversations to occur at convenient times.For example, PCPs could receive a messagefrom the inpatient team about a dischargedpatient, rather than a receiving a call inbetween scheduled patient visits. However,some participants noted that a messagingsystem should not replace discussions forurgent matters or for complex issues thatneed to occur by telephone. Finally, aconversation log would provide a historicalrecord if similar questions or clarificationssurfaced in the future.
TABLE 3 Continued
Requirement Caregivers Providers
Secure
Balance betweenaccess versussecurity
“Who’s going to be accessing it, when, and for what purpose? Is theresome piece that is public domain? And if I know that information,I can find this person quickly, and the rest of it is passwordprotected.” (Caregiver 1)
“Obviously it needs to be HIPAA compliant and passwordprotected, but it can’t be 10 clicks away. You can’t have to go toa new Web site that you have to update your login every2 months.” (ED provider, provider 10)
Control overpermissionsettings
“I would probably like it to be similar to how Facebook does theirprivacy, where you can say, ‘I want everybody at [hospital 1] to beable to access this.’ Or ‘I only want [child’s] direct care providers toaccess this.’ Or ‘I only want [child’s] immediate medical team for thisadmission to access this.’ Then give the families those options.”(Caregiver 7)
“The ideal piece of EHRs is that parents can go in and say schoolnurse A can look at my kid’s record, but school teacher Bcannot. . .it’s about [the patient]. They should control who hasaccess.” (School nurse, provider 17)
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FIGURE 1 Cloud-based shared care plan design examples. A, Caregiver 7. B, Complex care provider 19. CV, cardiovascular; DOB, date of birth; Feb,February; FEN, fluids, electrolytes, and nutrition; Jan, January; RESP, respiratory.
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They obviously want security, butultimately what they want is good carefor their child, and if one had to besacrificed, I think they would sacrificesecurity versus the care and carecoordination. –Subspecialist, provider 14
The last requirement we identified for careplans was storing them on a secureelectronic platform with strict permissioncontrols. Participants discussed the balancebetween maximizing security and ease ofaccess, with most respondents preferringeasier access to information rather than atime-intensive login process. Some trustedthat any platform developed by the healthcare system would have sufficient security(eg, Health Insurance Portability andAccountability Act [HIPAA] compliance),assuming the development of electronic careplans would follow similar security protocolsas current EHRs. Participants prioritizedemergency care information accessibilityover security because this informationshould be readily available to emergencyproviders (eg, first responders, schoolnurses, ED providers). Finally, participantsfelt having a tracking system of when andwhere users are accessing care plans wouldbe important to enhance accountability.
Participants felt that caregivers should controlpermission settings in terms of who can viewand modify the care plan. Access could begranted to teams or institutions in which allproviders within that team and/or institutionwould have access to the care plan. However,this should include an exception feature ifcaregivers want to exclude specific providers.Caregivers also noted that permissioncontrols should be specific to differentsections of the care plan based on the user’srelationship with the child. Additionally,different permission settings could be set forthe user’s ability to edit, comment, view,download, or share information.
DISCUSSION
In this study, we describe how electroniccare plans that are stored in the cloud maymeet the information needs of caregiversand providers who care for CMC andmitigate perceived information barriers that
exist in our current health informationsystems. Using a user-centered designapproach, we identified 4 care planrequirements (accessible, user-centered,collaborative, and secure) that can be metwith a cloud-based solution. We synthesizedcaregiver and provider recommendationsinto concrete actionable design featuresand implementation strategies that may betested in future phases of the user-centereddesign process.
With the findings in this study, we introducethe idea of a cloud-based solution tomitigate barriers relating to lack ofuniversal accessibility and informationinconsistency across multiple users andsettings. These barriers have been noted instudies in which researchers haveexamined the information needs of CMC,which suggest that a centralized, electroniccare plan may be beneficial.10,11,13,32 Giventhat most people are now connected to theInternet via mobile phones, cloud-basedcare plans would enable users to access,share, and update care plansinstantaneously as needed.33 In a fewstudies, researchers have explored the ideaof Web-based care plans for specificpediatric populations and within specificcare settings.18,19,21 We add to this existingbody of work by explicitly detailingrequirements for cloud-based care plans,such as having access via mobile devices,personal computers, and through links inthe EHR. Given functional limitations ofexisting EHRs, cloud-based care plans mayneed to live outside of the EHR. It issuggested in our findings that healthcare providers would be willing toaccess an external platform if the benefitsof accessing it (eg, content in a user-tailored format, efficient sharing ofinformation across care team members)outweigh the time required to access it (ie,simplified login process). We also add to theexisting body of work by identifying keyroles for maintenance of a collaborativecare plan.
With this study, we generated ideasregarding how cloud-based, electronic careplans would ideally be designed andimplemented on the basis of the informationneeds of caregivers and providers. However,
we recognize that many constraints andchallenges will need to be overcome whentranslating their ideas into practice, whichcan be explored through future phases ofthe user-centered design process. Forexample, usability testing will help toidentify whether team leaders are willing totake on the responsibility of overseeing thecare plan and which sections of the careplan contributors are realistically willingto update. Involvement of a clinicalinformaticist in the design process will helpto clarify which information can be auto-populated from other sources, and securityexperts can help to guide the optimalbalance between accessibility and privacy.User-centered design methods allow foriterative cycles of development and testing.Within these cycles, stakeholder needs,requirements, and constraints arecontinually revisited; designs are revisedon the basis of usability testing; andimplementation strategies are modifieduntil these care plans are proven to beeffective tools for coordinating care andimproving patient- and family-centeredoutcomes.
This study has some limitations. First, weinterviewed only 1 individual within many ofthe provider categories, thus limiting ourability to develop an in-depth understandingof particular needs and requirements ofdifferent provider groups. However, such astrategy satisfied our goal to explorecommon themes across a diverse set ofproviders. In future phases of the user-centered design process, it will be beneficialto gain in-depth insights from individualprovider groups and ensure allstakeholders involved in caring for CMCare well represented (eg, surgicalsubspecialists). Second, the caregivers weinterviewed were all English speaking,predominantly white, and reported highcomfort levels with technology. Futurestudies should explore the perspectives ofcaregivers with diverse racial and/or ethnicbackgrounds, limited English proficiency,and low self-reported technologycapabilities to understand their uniqueinformation needs and requirements forcare plans. Third, we did not explore theperspectives of patients with medicalcomplexity directly; therefore, researchers
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in future studies should explore thesepatients’ roles with respect to accessingand updating content in their care plans.Finally, we did not conduct observations ofhow information is currently shared orretrieved and how care plans are currentlyused. Observations will be essential infuture phases of the user-centered designprocess to discover additional needs andrequirements for shared care plans, givenexisting work-arounds that caregivers andproviders use.
CONCLUSIONS
Cloud-based, electronic care plans have thepotential to mitigate many of the barriersthat exist in our current health informationsystems. These care plans should beaccessible wherever and whenever theinformation is needed, user-centered interms of content and formatting,collaborative, and secure with strictpermission controls. Future research isneeded to test various design andimplementation strategies to meet thesestated requirements among diversegroups of stakeholders in real-worldsettings. Care plans that meet theserequirements have the potential to promoteefficiency, enhance communication,facilitate coordinated care, and improvehealth outcomes for CMC.
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TABLE 4 Key Roles and Responsibilities of a Collaborative Model for a Cloud-Based Shared Care Plan
Key Roles Characteristics of Individuals and/or System to Fulfill Role Responsibilities
Team leader A single individual or team Review all sections of the care plan and clarify conflicting, redundant,or confusing content with section “owner” on a routine basis
Medical expertise caring for CMC (knowledgeable about the range ofchild’s medical conditions)
Find contributors to fill gaps in the care plan
Has a 10 000-ft view of the child (understands how 1 change mayimpact child as a whole)
Maintain an active problem list
Sees the child most often
Contributors Has the most current information about a particular section of the careplan (eg, tracheostomy settings, care coordination, family history)
Review and update sections of the care plan that pertain to their areaof expertise after all encounters with child
Includes caregivers and other family members Caregivers should review the care plan to ensure it is feasible toimplement and reflects actual care
Caregivers should update child’s family, social, or developmentalhistory on a routine basis
HIT system Cloud-based platform to enable multiuser updates in real time Autopopulate relevant content from the EHR to various sections of thecare plan
Robust HIPAA-compliant data infrastructure Auto–sign off when changes are made with person, date and timestamp
Copy and paste functionality to transfer editable content from providernotes
Trigger users to update the care plan at specified intervals
Capability to set permissions at the user level (eg, edit content, viewonly, share, download)
Grant access to sections of the care plan depending on user’spermission level
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DOI: 10.1542/hpeds.2017-0242 originally published online June 5, 2018; 2018;8;394Hospital Pediatrics
Rita Mangione-Smith and Maria T. BrittoArti D. Desai, Elizabeth A. Jacob-Files, Julia Wignall, Grace Wang, Wanda Pratt,
Plans for Children With Medical ComplexityCaregiver and Health Care Provider Perspectives on Cloud-Based Shared Care
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