The document describes a three-phase stakeholder engagement process to develop an asthma discharge tool for children presenting to emergency departments with uncontrolled asthma. In Phase 1, interviews with 28 stakeholders including caregivers, physicians, nurses and administrators identified themes regarding in-home asthma management and experiences with current discharge tools. Phase 2 involved prototyping and refining the discharge tool based on feedback from 9 stakeholders. In Phase 3, 11 caregivers and clinicians evaluated the new tool compared to existing tools using a quantitative survey and card sorting activity, showing strong preference for the new tool developed through stakeholder engagement.

1. 17J. Comp. Eff. Res. (2016) 5(1), 17–30 ISSN 2042-6305
part of
Research Article
10.2217/cer.15.52 © 2016 Future Medicine Ltd
Aim: To present the methods and outcomes of stakeholder engagement in the
development of interventions for children presenting to the emergency department
(ED) for uncontrolled asthma. Methods: We engaged stakeholders (caregivers,
physicians, nurses, administrators) from six EDs in a three-phase process to: define
design requirements; prototype and refine; and evaluate. Results: Interviews among
28 stakeholders yielded themes regarding in-home asthma management practices
and ED discharge experiences. Quantitative and qualitative evaluation showed strong
preference for the new discharge tool over current tools. Conclusion: Engaging end-
users in contextual inquiry resulted in CAPE (CHICAGO Action Plan after ED discharge),
a new stakeholder-balanced discharge tool, which is being tested in a multicenter
comparative effectiveness trial.
First draft submitted: 14 July 2015; Accepted for publication: 4 October 2015;
Published online: 21 December 2015
Keywords: asthma • health communication • patient discharge • pediatrics • stakeholder
engagement • written action plan
Comparative effectiveness research is intended
to address the expressed needs of patients, care-
givers and other decision-makers in health-
care [1]. Such engagement is considered critical
to evaluating interventions relevant to end-
users and that are feasible for use in real world
clinical settings. National and international
asthma guidelines recommend the use of writ-
ten instructions to promote appropriate use of
medications, avoidance of environmental trig-
gers and advice about when to seek additional
medical attention [2,3]. However, systematic
reviews indicate that the content, format and
benefits of such written instructions (usually
called action plans) are highly variable, with
relatively low rates of use because most action
plans are designed by teams of medical experts
with relatively little input from patients,
­caregivers and clinicians [4,5].
The CHICAGO study is a multicenter
comparative effectiveness trial funded by the
Patient-Centered Outcomes Research Insti-
tute (PCORI) to test strategies to improve
the care and outcomes of African–Ameri-
can and Latino children with uncontrolled
asthma presenting to the emergency depart-
ment (ED) in Chicago [6]. In Chicago,
African–American and Latino children aged
5–11 years bear a disproportionate share
of the burden from asthma [7]. Among the
most visible of these disparities is the five- to
seven-fold higher rate of visits to the ED for
uncontrolled asthma in communities with a
high proportion of African–American and
Latino children compared with other com-
munities [Department of Public Health, Chicago,
Pers. Comm.] . As part of the PCORI-funded
CHICAGO study, we employed user-cen-
tered design methods to engage caregivers,
clinicians and administrators in the develop-
ment and evaluation of an asthma discharge
tool for African–American and Latino chil-
dren who present to the ED for uncontrolled
asthma [8]. To our knowledge, this is the first
Engaging stakeholders to design a
comparative effectiveness trial in children
with uncontrolled asthma
Kim Erwin*,1
, Molly A
Martin2
, Tara Flippin1
,
Sarah Norell1
, Ariana
Shadlyn1
, Jie Yang1
, Paula
Falco1
, Jaime Rivera1
, Stacy
Ignoffo3
, Rajesh Kumar4
,
Helen Margellos-Anast5
,
Michael McDermott6
, Kate
McMahon7
, Giselle Mosnaim8
,
Sharmilee M Nyenhuis2
,
Valerie G Press9
, Jessica E
Ramsay5
, Kenneth Soyemi10
,
Trevonne M Thompson2
& Jerry A Krishnan2,11
1
IIT Institute of Design, 350 N LaSalle,
Chicago, IL 60654, USA
2
University of Illinois at Chicago, 1200 W
Harrison St Chicago, IL 60607, USA
3
Chicago Asthma Consortium,
PO Box 31757, Chicago, IL 60631, USA
4
Ann & Robert H Lurie Children’s
Hospital of Chicago, 225 E Chicago Ave.,
Chicago, IL 60611, USA
5
Sinai Health System, California Avenue,
15th Street, Chicago, IL 60608, USA
6
Illinois Emergency Department Asthma
Surveillance Project (IEDASP)
7
Respiratory Health Association, 1440 W
Washington Blvd, Chicago, IL 60607,
USA
8
Rush University Medical Center, 1653 W
Congress Pkwy, Chicago, IL 60612, USA
9
University of Chicago, 5801 S Ellis Ave.,
Chicago, IL 60637, USA
10
John H Stroger Jr Hospital of Cook
County, 1901 W Harrison St Chicago,
IL 60612, USA
11
University of Illinois Hospital & Health
Sciences System, 1740 W Taylor St
Chicago, IL 60612, USA
*Author for correspondence:
kerwin@id.iit.edu
For reprint orders, please contact: reprints@futuremedicine.com

2. 18 J. Comp. Eff. Res. (2016) 5(1) future science group
Research Article Erwin, Martin, Flippin et al.
report of methods and outcomes of end-user engage-
ment to develop an asthma discharge tool tailored to
high-risk children for a comparative effectiveness trial.
We are now testing the effectiveness of the asthma dis-
charge tool on implementation and clinical outcomes
in the multicenter CHICAGO pragmatic clinical trial
(ClinicalTrials.gov NCT02319967) [9].
Methods
We engaged four stakeholder groups: caregivers of
minority children with a history of uncontrolled
asthma presenting to the ED in the past 12 months;
ED physicians and nurses; ED administrators; and
outpatient clinicians. Stakeholders from six EDs
in Chicago that would serve as the centers for the
clinical trial (CHICAGO ED clinical centers) were
engaged in a three-phase process that employed vari-
ous methods of contextual inquiry (Figure 1): define
design requirements with multistakeholder user input;
prototype and refine to shape a discharge tool that
fits the content and support needs of all key stake-
holders; and evaluate end-user stakeholder prefer-
ences for the new and existing discharge tools. The
study was approved by institutional review boards
(IRBs) at all participating institutions, IRB #2014-
0412, 2014-056, 2014-15829, MSH #14-10, 14-0534,
14-095 and 13083001-IRB01 at the University of
Illinois at Chicago (IL, USA), Illinois Institute of
Technology (IL, USA), Lurie Children’s Hospital (IL,
USA), Mount Sinai Hospital (IL, USA), University of
Chicago Medicine (IL, USA), Cook County Hospital
(IL, USA) and Rush University Medical Center (IL,
USA), respectively.
A convenience sample of physician and nonphysician
clinicians and administrators from each of the partici-
pating six ED clinical centers participated as key infor-
mants. Key informants were selected to be representa-
tive of their clinical center in their ability to speak to
the processes and materials involved in discharge from
the ED and as active end-users on the clinical side.
Figure 1. We employed a three-phase design process to develop a stakeholder-balanced asthma discharge tool. Stakeholders
included patient caregivers, emergency department clinicians (physicians, nurses, administrators) and ambulatory (outpatient)
physicians. A highlight of findings from each stage is also presented.
ED: Emergency department.
Contextual stakeholder
interviews
Use of prototypes and toolkits
with stakeholders to draw out
design requirements
28 total stakeholders
Results Discharge tool requirements Final discharge tool Strong multi-stakeholder
preference for the final
discharge tool
9 total stakeholders
Illustration-driven format
and medication-optimized
instruction
Vocabulary clarity
Page count and focus
Visual presentation and format
Medication instruction
Conversation support
participant’s recruitment site; all participants
recruited from one of six participating
Chicago-based EDs
=
20 total stakeholders 57 total
20 total
15 total
11 total
6 total
5 total
Iterative prototyping and testing
using stakeholder reviews
Patient
caregivers
ED doctors
ED nurses
ED admins
Outpatient
providers
Gibson survey to assess purpose,
appearance, content, usefulness
and overall impact
Card sort activity to elicit
qualitative responses
Methods
Phase 1 Phase 2 Phase 3
Define requirements Prototype + refine Evaluate
B
A
A
B
B C
A B C D
A B C D F
E
C D E F
BB B B B B
A B E
E
C D
B B
A
A A A
A A A
B B B
B B B
B B B
B B BED D E

3. www.futuremedicine.com 19
Figure 2. Sample projectives used with stakeholders in Phase I (from left to right): a caregiver-drawn asthma journey map; a
physician-annotated prototype discharge tool; three sample discharge tools built by outpatient providers from a toolkit of
preprinted sticky notes.
future science group
Engaging stakeholders to design a comparative effectiveness trial in children with uncontrolled asthma Research Article
Similarly, a convenience sample of caregivers of black
or Hispanic/Latino children who had visited at least
one of the six ED clinical centers in the past 12 months
participated in focus groups, user-centered home
observations or both. Previous studies have established
the critical role of triggers in the home environment
and inadequate asthma controller use as risk factors for
asthma exacerbations and emergency department visits
in children with asthma. Thus, the asthma discharge
tool included a focus on both environmental control
and appropriate use of asthma medications [10–14].
Phase I: define design requirements
Data collection in Phase I employed a user-centered
design approach that combines field interviews con-
ducted onsite in a user’s home or workplace with direct
observation of users engaged in relevant tasks. These
methods come from the field of design, which are not
typically used in qualitative health research. The pri-
mary difference is that design employs a contextual
approach that focuses on context of use – not just a
tool or its content – and conducts the inquiry using
user-centered observations. [15]. Central to contextual
inquiry is the belief that human actions can only prop-
erly be understood in context, and that all activity is
informed by immediate circumstances and therefore
is best observed ‘in the wild’ rather than in a lab or
through recounting past events with others in focus
groups [16]. We, therefore, conducted all inquiry in
clinical settings in the ED and ambulatory sites, and in
the homes of caregivers. We also employed projectives,
which in this study were prototype discharge docu-
ments, toolkits from which physicians could construct
their own discharge document and probes consisting
of stakeholder-drawn visualizations of relevant past
and present experiences of asthma management and
ED experiences (Figure 2).
Weconducted19keyinformantstakeholderinterviews
with physicians, nurses and administrators from the ED,
and outpatient clinicians. All interviews were conducted
in the ED or ambulatory setting for 60–80 min. Two
interviewers were present, and interviews were audio-
recorded and photographed. The key informant protocol
covered three domains: ED patient discharge experience
using open-ended questions, discharge simulations and
role play to target challenges and barriers in preparing
a patient/caregiver for discharge; asthma treatment rec-
ommendations on ED discharge, including barriers to
implementing these components in their ED or practice;
and prototype discharge tool review to elicit feedback
about preferred discharge instructions.
We also conducted interviews with caregivers of
African–American and Latino children with a his-
tory of an ED visit for uncontrolled asthma in the
past 12 months in one or more of the CHICAGO
ED clinical centers. Eight of the caregivers were Afri-
can–American and one was Latino, seven were single
mothers, seven had other children and seven had other
family members diagnosed with asthma. All interviews
were conducted in the home and ranged from 2 to 3 h.
They were audio-recorded and transcribed. A digital
camera was used to document the home environment
and location of relevant artifacts, such as storage of
medications and discharge documents. Interviews tar-
geted baseline asthma knowledge, self-management
practices and recent ED discharge experience across
four touchpoints – waiting, triage, treatment and dis-
charge. The approach consisted of open-ended ques-
tions, review of a prototype discharge document and
use of multiple probes and activities to help caregivers
express asthma care experiences.
All interview data were coded and analyzed using
principles of Grounded Theory to identify recurring
patterns of beliefs, interactions, behaviors and needs
across stakeholder groups and clustered into design
requirements and opportunity areas for concept devel-
opment [17,18]. Analysts worked in pairs to ensure
intercoder reliability (S Norell, J Rivera and T Flippin).

4. 20 J. Comp. Eff. Res. (2016) 5(1) future science group
Research Article Erwin, Martin, Flippin et al.
Phase II: prototype & refine
A total of 9 caregivers, ED clinicians (physicians and
nurses) and ED administrators were engaged in two
iterations of assessment and refinement to converge
on a single discharge tool that incorporated health
literacy and information design principles (maximum
Flesch–Kincaid 6th reading grade level; reduced word
count, sentence length, text blocks and medical jargon;
consistent use of typographic hierarchy and underlying
grid; and key information presented in illustration and
callouts) [19–24]. We also evaluated the Flesch–Kincaid
reading level of existing discharge documents at the
CHICAGO ED clinical centers. The CHICAGO
investigators (clinicians, social scientists, community
health workers and supervisors) then collaborated in
providing feedback to the design team to finalize an
asthma discharge tool for use in children presenting to
the ED with uncontrolled asthma.
Phase III: evaluate stakeholder preferences
We then assessed preferences among caregivers and ED
clinicians by comparing the documents currently in use
in two different CHICAGO ED clinical centers with
the newly developed tool. We employed a published
quantitative assessment tool (Gibson survey) that evalu-
ates five domains (purpose, appearance, usefulness,
overall impact and for clinicians, content) developed
for patients/caregivers (15 items) and clinicians (30
items) [25]. Participants were asked to respond using a
five-point Likert scale (strongly disagree to strongly
agree); possible scores are 1–5, with higher scores indi-
cating greater preference. To understand the rationale
for preferences among caregivers and clinicians, we also
employed qualitative methods using a card sorting activ-
ity. Card sorting works to surface mental models and
evaluate participant agreement by providing a stack of
cards containing phrases or words and asking each par-
ticipant to sort the cards into categories, as makes sense
to them [26,27]. A total of 11 cards were presented to cli-
nicians, with another 11 to caregivers. All cards were
crafted with first-person statements, such as “I think this
document provides more guidance for my patients after
discharge” and were structured to capture both partici-
pant behaviors and attitudes. Responses were tabulated
and assessed for patterns across and within stakeholder
segments using data visualization software Nineteen [28].
Results
Phase I: define design requirements
We conducted 28 on-site stakeholder interviews with
nine caregivers, six ED physicians, four ED nurses,
four ED administrators and five outpatient clinicians
(Figure 1). Analysis of contextual research data pro-
duced eight themes for in-home asthma management
practices and three themes related to ED discharge
experiences (Table 1).
Tools to share information, coordinate care
Caregivers expressed the need for a discharge tool that
facilitates communication, education and coordina-
tion of care with others (babysitters, extended family,
school, daycare and camp personnel) who share in the
care of their children.
Discharge information stored out of sight
Current discharge documents are often stored in
bags, drawers and with stacks of bills, so are not
easily available for reference if needed. No caregiv-
ers had asthma-related information on display in the
home.
Learning through trial & error causes gaps in
understanding even in experienced caregivers
The sheer number of contributing factors can make
the logic of asthma exacerbations hard to piece
together. While our caregivers reported prioritiz-
ing their children’s health – by moving, leaving their
jobs, delaying promotions to be more available to care
for their children, vigorous cleaning or keeping kids
inside – interviews suggested their management strat-
egies are often based on an incomplete understanding
of asthma. The resulting failure of proactive efforts
can promote reactive behavior (i.e., ED visits).
Medication workarounds
Medication adherence is tough even for informed care-
givers. Inhalers run out, causing families to share or to
substitute reliever medicine. Because childcare usually
occurs outside the home, shared inhalers must travel
to multiple sites and return home without getting lost.
Medication confusion
Many caregivers and outpatient clinicians reported
confusion between reliever and controller inhalers.
Caregivers also expressed distrust of continuous steroid
use and potential side effects on their growing child,
affecting their commitment to prescribed regimens.
Patient education positioned at the weakest
moment
Discharge protocols position patient education at the
moment when patient caregivers are least prepared to
take advantage of it – in the last 20 min of a typically
3–6 h (or longer) ED visit. Several nurses expressed
frustration with caregivers’ unwillingness or inability
to focus on patient education at discharge. Caregiv-
ers also reported frustration related to lengthy dis-
charge processes, repetition of information they say

5. www.futuremedicine.com 21future science group
Engaging stakeholders to design a comparative effectiveness trial in children with uncontrolled asthma Research Article
Table1.Themesfromcontextualresearchinthehomeandemergencydepartmentsites.
ThemesDetailsQuotes
1.Toolstoshare
information,coordinate
care
Needtoeducateothers
Needtoshareinformation
“(Youneedto)notonlyeducateyourself,buttoeducateothersthatyouwillleaveyourchild
withforlongperiods–babysitters,caregivers,teachers”–Caregiver
“Maybe(wecouldhave)awebsitetogetthisactioncareplantoprintoutandgivetotheschool
orcaretaker?Somethingthatyoucaneducatesomebodywithin2min?”–Caregiver
2.Discharge
informationstoredout
ofsight
Needforsimplifiedinstruction
Stored,notdisplayed
Repetitiveinformationignored
“IkeeptheminabinwhereIkeepallmymailandstuff.Thenafterayearortwo,Igothrough
it,andwhateverneedstobethrownout,Ithrowout”–Caregiver
“Itisprettymuchduplicatesofwhatwehave.SoIhaveitpiledup.Ihaveatonofstufftoshred
now”–Caregiver
3.Learningthrough
trialanderrorcauses
gapsinunderstanding
inevenexperienced
caregivers
Mentalmodelofasthmapieced
togetherthroughtrialanderror,
personalexperience
Logicofasthmahardtosee,plan
for
Well-intendedactionsoften
ineffective
“Ihopeshedoesnotcatch(anasthmaattack)todaybecauseitisrainingatonepoint,thenitis
hotatanotherpoint”–Caregiver
“Everytimehehashadanasthmaattack,ithasbeendifferentsituations.Sowedonotreally
knowwhathistriggeris.Theinitialtimeitwasfreshcutgrassthatsethimoff.Ithasbeena
changeoftemperature,ithasbeenifyouspraysomething,ifhehasbeenaroundsomebody
withacold.Andsoitisveryhardtosay,okay,whattriggereditthistime?”–Caregiver
“Germsareatrigger…soIclean.Ibleach.Iamableachfanatic”–Caregiver
4.Medication
workarounds
Inhalersdonotlastaslongasthey
should
Familiesshareinhalers
Substitutewith‘rescue’medicine
inhalersneedtotravel
“Ifmysonusesuptheinhalerwithin2or3weeks,whatamIsupposedtodofortheother
week?Becauseyouhave4weeksinthemonth”–Caregiver
“Mymomisanasthmatic,sowewillgotoherhouseandgetsomeasthmaspray(whenours
runsout)”–Caregiver
“Ifweareout,Ihavenochoicebuttousetherescueinhaler”–Caregiver
“Ihavevisitswhere…theyarebringingthebabysitterandthegrandmaandthedadandthe
mom.Andtheyaretryingtofigureouthowtheyaregoingtotransferthekids’medications
betweenallthesesites”–Outpatientprovider
5.Medicationconfusion Inhalermix-ups
Medicationnamessoundalike
‘Better=cured’
“Fastactingorrescuemedication?Honestly?Ineverknewwhatthecontrollermedicinewasto
whatisarescuemedicine”–Caregiver
“ThisProventilsoundslikepreventative.SoImighthavesaidtakeFlovent,theorangepump…
andthepatientcomesbackwithayellowandorangeProventilpumpandsaysyeah,thisisthe
preventone.Itaketwopuffseverymorningandtwopuffseverynight.Iamlikeno!Icannot
eventellyouhowmanytimesthathashappened”–Outpatientprovider
“WhentheyfirstsenthimhomewiththemedicationIwaslikeIamnotgivinghimallthat
medicationallthetime,hedoesnotneedit”–Caregiver
6.Patienteducation
positionedatthe
weakestmomentin
discharge
Caregiverfatigue
Repetitiveinformation
Neglectingotherfamily
“Parentsdonotwanttosithereandlistentothisstuffwhentheirrideiswaitingoutsideand
theyhavealreadybeenherefor4–6h,andtheyaretiredandhungryandmiserableandtheir
kidisscreaming”–EDphysician
“Upondischarge,theygiveyouthewholework-up–dischargeinstructions,anumbertocallfor
emergencies,follow-upappointments,informationonasthma.Theydoiteverytime.Evenifwe
aresousedtotheinformationwedonotneeditanymore”–Caregiver
“4histhemostwehavestayedthere.Iamjustreadytogo,becauseoftheotherthree(kids)I
haveathome”–Caregiver
ED: Emergencydepartment.

6. 22 J. Comp. Eff. Res. (2016) 5(1) future science group
Research Article Erwin, Martin, Flippin et al.
they already know, and the need to manage work,
other children and household obligations reduces
receptivity to education at discharge.
Fragmented discharge experience
Operational realities can produce an ED discharge
experience that is executed piecemeal and by multiple
staff members. For example, sometimes the attending
physician delivers medication instruction, a resident
attempts patient education and a nurse prints and
delivers paperwork. This workflow may change based
on the number of patients waiting to be seen or acuity
of illness among patients in the ED – the pressure to
‘treat and street’ was noted as a driver of practice vari-
ation. Clinical staff reported that continuity and pre-
dictability in discharge is difficult to provide using
hand-offs, especially in EDs where poor site lines can
limit communication between staff.
Clinician/caregiver conversations not
well-supported by existing tools
Caregivers often receive large amounts of information
at an ED visit. Clinic staff across sites reported numer-
ous challenges in communicating that information
to caregivers in the ED. Many staff said they do not
review discharge documents with patients, as time is
tight and documents are long, complicated and hard to
use with caregivers.
Stakeholder input regarding the design of the dis-
charge tool identified several design priorities for the
discharge tool (Table 2).
Vocabulary clarity + reading level
Reduce complexity and simplify language to include
children, more caregivers and others outside the family.
Page count & focus
Remove extraneous content and streamline to focus on
caregiver action steps.
Visual presentation & format
Use illustrations and layout to make key ideas acces-
sible and inclusive, while retaining a professional and
serious appearance.
Medication instruction
Organize, clarify and detail all medication-related
instruction so as to create a plan that caregivers can
understand and follow.
Conversation support
Simplify and structure the protocol for clinicians,
support discussion of sensitive topics and make a tool
caregivers can use with others.
ThemesDetailsQuotes
7.Fragmenteddischarge
process
‘Treatandstreet’
Dischargedistributedacrossstaff
Staffhand-offallowsinformation
toslipthroughthecracks
“Normally,thenursewillcomeback…withtheprescriptionsandfurtherinstructions.Firstthe
doctoralwayscomesinandsayswhatever,thenthenurseistheonewhocomesbackandgives
youyourdischarge”–Caregiver
”Multipleprofessionalscouldberesponsiblefor(discharge),youknow,sowhenmultiplepeople
couldbeinvolved,ifeachofthosepeopleismediocre,youcouldgetdischargedwithpaperwork
thatsaysnothing”–EDnurse
8.Clinician,caregiver
conversationsnot
well-supportedbytools
Toolsaredense,text-heavy,hard
touse
Conversationistheeducational
touchpoint
“MostofthetimeIdonotpayverymuchattentiontothedischargepaperbecauseitoffersme
nothing.Icannotimaginethatitoffersmuchtothepatient”–EDnurse
”Itgetstobe15pages…youhandthistothemandtheyarelike,‘Whatisallthisstuff?’Ifthere
issomethingimportant,Itrytocircleit”–EDphysician
”Wedonothavegoodeducationtools,andeverythingfallsbacktothenurseattheendofthe
line”–EDnurse
”Thevalueinadischargedocument…istheteachingthathappenswhenyouaregivingthe
document.Thedocumentshouldbeateachingtool,notonly‘thethingyoureceive”
–Outpatientprovider
ED: Emergencydepartment.
Table1.Themesfromcontextualresearchinthehomeandemergencydepartmentsites(cont.).

7. www.futuremedicine.com 23future science group
Engaging stakeholders to design a comparative effectiveness trial in children with uncontrolled asthma Research Article
Table2.Designrequirements.
RequirementsDetailsQuotes
1.Vocabularyclarity+
readinglevel
Simplifylanguageandsentence
structure
Uselayman’sterms,notmedical
jargon
“Alotofourpatientscannotread,andtheirparentscannotread,andthenyouhandtheman
asthmaactionplananddothebestthatyoucan”–EDdoctor
”Inthebeginning,youarenotfamiliarwiththemedicalterms,soyoukindofhaveto…explain
itjustalittlesimpler”–Caregiver
”Iseethingsthatconfusemypatients.Forexample,manydonotknowwhatanMDIis,socallit
somethingthattheyaregoingtounderstand”–EDnurse
2.Pagecount+focus Reducewordcount
Promoteactionsteps
Removeextraneousmaterial
“Therearesomanypagesthatnobodylooksatanyofthem…”–EDphysician
”ThepaperworkthatEDsgivenowcomesfromtheEMR,soitisfilledwithgreatnuggetsbut
thereistotallyunnecessaryblather.Whenpatientslookatit,theycannotfindthethingsthey
actuallyneed”–Outpatientprovider
”Theygiveyouallthesesheets,andtobequitehonest,asaparent,justtellmewhatisgoing
on.TellmewhatIneedtodo.Iamnotgoingtotaketime–althoughmysonissick,donotget
mewrong–butIamnottakingtimetoreadthroughallyourliterature.Justgettotheplanof
actionhere”–Caregiver
3.Visualpresentation+
format
Engagekidsincare
Earnaspotontherefrigerator
Usevisualssoastoinclude
everyone
Makeeasytocopyandshare
“Ineedtoexplaintohimaboutasthmaandthetighteningofthechestandallofthat,because
heneedstoknow…sothatonedayifIamnotthere,hecansayithimself”–Caregiver
”Ithasonethingtoeducatecaregivers,whichisimportant,butintheend,ithasgottobethe
child.Thechildisgoingtoknowwhenhecannotbreathe”–EDnurse
”Iwoulddefinitelyputsomething(visual)onthefrontpagesothatthekidknows‘itismine”
–EDadminnurse
”Allpatientshavedifferentlearningstyles,right?Youmightnotbeabletoassessthatfully
inanemergencyencounter.Butyoucouldhitonmultipleareas.Forexample,usewritten
educationfromtheasthmaplanandvisualcuesthatpatientscanidentify”–Outpatient
provider
4.Medication
instruction
Clearlyorganizemedicationtypes
Clarifytiming,durationand
dosages
Reinforcemedicationadherence
aspriority
“Themeansofadministeringmedications,howtousethem,whentousethemisvery
confusing.Allthemedicationshavetwodifferentnames.Manyofthemcomeinmultiple
differentforms.Theymaybegiventwodifferentasthmapumps,andIthinktheydonotknow
thedifferenceortheymaybeaskedtouseequipmentthattheyhavenofamiliaritywith,like
aspaceroranebulizermachine,orforthatmatterevenbeexposedtomedicationformsthat
theyarenotfamiliarwith”–Outpatientprovider
5.Conversationsupport Standardizekeymessages
Simplifydischargeconversation
Provideasharedtooltoanchor
theconversation
Helpcaregiversparticipate
Helpcaregiverssharewithothers
intheircarecircle
“GivemethesimplestprotocolIcanrememberwhilerunningfromroomtoroom”
–EDphysician
”Ithinkthenursesthemselvesdonotunderstandwhattheyneedtocommunicatetothe
patient,thinkingthatthey(patients)wouldjustknow”–EDadminnurse
“IwouldsaymostofthetimeItalkalotandwhenIamdoneIalwaysaskiftheyhavegot
questionsandIdonotgetmuch”–EDnurse
”(Iftheybringthisdocument)Iwouldknowthatatleasttheeducationhasstarted.Itwould
helpmehere,too,becausesometimesmanyshowupwithoutanypaperwork,andIhavegot
15mintofigureoutwhathappened”–Outpatientprovider
ED: Emergencydepartment.

8. 24 J. Comp. Eff. Res. (2016) 5(1) future science group
Research Article Erwin, Martin, Flippin et al.
Phase II: prototype & refine
Nine stakeholders participated in prototype reviews
(three caregivers; three ED physicians; one ED nurse
and two ED administrators, Figure 1). In these reviews,
stakeholders were presented with three potential dis-
charge tool concepts based on Phase I results and were
asked to engage in two cycles of review and collabora-
tive editing (Figures 2 & 3). Across stakeholder groups,
highly-illustrated visual learning concepts earned the
strongest favorable responses for its simplicity, clarity,
visual appeal and ease of use. Literacy levels of patients
and caregivers were a recurring topic in the formative
research. Many ED physicians asked for solutions that
used visual strategies to offset the complexity of text.
ED nurses sought tools that could engage children
directly in self-management. Caregivers also expressed
confusion and impatience with materials that were
hard to read, apply and share. In response, we custom-
ized illustrations to explain key vocabulary and self-
management concepts and employed the traffic light
construct of green/yellow/red zones to aid caregiver
assessment. The final CHICAGO asthma discharge
tool, called the CAPE (CHICAGO Action Plan after
ED discharge) (Figure 4), has a Flesch–Kincaid read-
ing level of 4.7 (compared with existing documents
in use across the CHICAGO ED clinical centers that
had reading levels of 5.5–7.8). The final discharge
tool is also designed to support simplified reading
strategies by using multiple principles of information
design, such as typographic hierarchy to create prior-
ity and aid browsing, use of an underlying grid and
white space to reduce visual complexity, reduced line
length and text blocks to increase readability and the
option for printing or copying in black and white for
low-cost distribution.
Phase III: evaluate stakeholder preferences
Results of the Gibson survey suggested caregiver and
clinician preference for the new discharge tool across
all categories (Figure 5). Qualitative assessments using
the card sorting activity also demonstrated a preference
for the new discharge tool (Figure 6). Among clinicians,
the card sorting activity elicited strong emotional
responses as they shared their frustrations over their
current asthma action plans. There was full consen-
sus for the new tool for four of eleven questions (items
3, 4, 6 and 10). Clinicians reported that they favored
the new tool in part because of its clarity; one physi-
cian observed that “for our patient population, this is
awesome…it is not too dense, and it is not word over-
loaded. This is very succinct. It is easy to understand.”
Clinicians also indicated that the new tool could serve
as a support for conversations and for teaching self-
management. One clinician noted that the new tool
was ‘more interactive, so as you go through it people
will have a visual and can ask questions’, whereas when
using the existing document ‘there is not as much to go
through, step-wise, so its less likely that you are going
to be able to point and continue a dialog based on what
is in the document’.
Caregiver responses also demonstrated a preference
for the new discharge tool (Figure 7). However, caregiver
responses were strongest for the new tool when queried
about behavioral items, such as “This document is more
clear about which actions I should take after the Emer-
gency Department” (item 3) or “I am more likely to
Figure 3. In Phase II, an early prototype was refined through iterative stakeholder input to develop a new
discharge tool, CAPE (CHICAGO Action Plan after emergency department discharge).
CHICAGO: Coordinated Healthcare Interventions for Childhood Asthma Gaps in Outcome; QR: Quick response.
An early-stage prototype...
1. Digital resource focused A stakeholder balanced solution
Includes QR codes that link
to online asthma content to
better accommodate differing
levels of caregiver expertise
Structured around four action steps
Illustration-driven format from
prototype 3 with supporting text
at a reading grade level of 4.7
(Flesch–Kincaid)
Also integrates stakeholder
preferred medication instruction
from prototype 2 and a digital
link from prototype 1
Dedicates an entire page to
clarifying inhaler types and
medication regimen
Uses illustration to represent
key vocabulary and self-
management concepts
to address low-literacy
populations and children
2. Medication optimized
3. Visual learning focused
Drafted collaboratively by
CHICAGO Plan investigators;
Organizes content into four clear
action steps:
1. Take medication
2. Follow-up with provider
3. Recognize symptoms
4. Stay on top of asthma
(self-management instruction)
...informs three new prototypes ...refined into a final
discharge tool

9. www.futuremedicine.com 25future science group
Engaging stakeholders to design a comparative effectiveness trial in children with uncontrolled asthma Research Article
Figure 4. The new discharge tool, or CAPE (CHICAGO Action Plan after emergancy discharge), includes several key advances
in design to improve communication of medications, symptom recognition and action steps, and trigger recognition and self-
management.
CHICAGO: Coordinated Healthcare Interventions for Childhood Asthma Gaps in Outcome; QR: Quick response.
Overall format
Medication clarification
Trigger recognition +
self-management tips
A ‘smart’ document
Symptom recognition +
action steps
• Four simple steps to organize action, conversation
• Written in second person to increase personal relevance
• Strong typographic hierarchy and underlying grid to organize content;
• Simplified language and reduced medical jargon (Flesch–Kincaid reading
grade level of 4.7)
• Illustrations average 50% of content and visual space
• Medication instruction broken down into
clear steps
• Illustrations of tools to clarify/teach
unfamiliar terms
• Checkboxes required so as to trigger
discussion with caregiver
• Colored stickers provided to distinguish
inhalers
• Stoplight structure to organize action,
signal the dangerous progression of
asthma
• Illustrations to diagnose child’s status;
• Friendly style to engage kids
• Call-outs to reinforce illustrations – brief
and written in jargon-free language
• QR code (bottom) links smart phones to
more online asthma resources
• Step-by-step instruction to help caregivers
understand proper inhaler technique
• Simple language and illustration helps
kids teach themselves and siblings
• Illustrations of triggers for clinicians
to point at to aid conversation
• Room fo caregivers – not just
doctors – to write so as to promote
caregiver role in asthma control
• Home environment questions to
prompt caregiver engagement
• Tips and tricks to help start new
self-management practices
2
GREEN ZONE
YELLOW ZONE
Call 911RED ZONE
How to use an inhaler with a spacer
Works as well as nebulizer!
Even if your child shows no
signs of breathing problems,
keep using the “controller”
medicine every day.
breathes easily
plays as usual
breathes fast when
standing in place
Go play
Call doctor
Get help
If your child shows any of
these signs, use “rescue”
medicine right away, keep
using “controller” medicine,
and call your doctor.
If your child has any of these
signs, use “rescue” medicine,
and go to the emergency
room or call 911.
hard time saying a full
sentence without a breath
hard time walking
no coughing or
wheezing
peak flow is at
normal level
sleeps soundly
coughs a lot at night
hurts to breathe deeply
hard to sleep because
of breathing problems
breathing does not get
better within 20 minutes
of taking “rescue”
medicine
breathing so hard that
they are drowsy or sleepy
lips or fingernails are
grey or blue
breathing gets worse
within 20 minutes of
taking “rescue” medicine
ribs show when
breathing
hard time breathing
when sitting in place
Take cap off the inhaler. Check for
and remove any dust, lint, or other
objects. Shake the inhaler well.
Put lips around device, press inhaler
one time. This puts one puff of
medicine into the spacer.
If your child needs to take another
puff of medicine, wait 1 minute.
After one minute, repeat steps 3 to 6.
© 2015 CHICAGO Plan investigators + PCOR1
The CHICAGO Plan is a PCOR1-funded
study comparing asthma interventions. For
questions regarding this document or the
CHICAGO Plan.
contact: Trevonne Thompson, MD.
tthomps@uic.edu
Breathe in deeply and slowly, and
hold your breath.
Attach the inhaler to the spacer. Breathe out all the air, away from
the spacer.
Remove the device from the mouth.
Then hold your breath for 5 secs. Then
breathe normally away from the spacer.
Rinsing is only necessary if the medicine you just took was an inhaled steroid. Have
your child rinse his or her mouth out with water after the last puff of medicine. Make
sure your child spits the water out. Do not allow the child to swallow the water. Recap
the inhaler.
See your child’s doctor within 3 days of your ER visit
From the American College of Chest Physicians
Illustrations by Paula Falco
1st
dose time/date
1st
dose time/date
How often
How often
For how long
It is very important you complete the dosage
After that, use ONLY when symptoms occur
Take every day EVEN IF no visibile symptoms
Number of puffs
Number of puffs
Things to know:
Things to know:
Things to know:
Mark your meds
at the pharmacy:
Mark your meds
at the pharmacy:
• is another powerful
“rescue” medicine
• if you were given these
in the emergency room,
it is very important that
you finish them!
Doctor’s name
What are your child’s triggers?
What might be useful tricks?
set an alert on your smartphone
keep medicine by your coffee pot
Clinic telephone number Your appointment date and time
Call your child’s regular doctor as soon as possible to help
you understand your child’s asthma and home treatment plan.
Build a trigger list of what seems to make your child’s asthma
act up. Add to that list as you notice new triggers. Try to help
your child avoid these!
If your child has a cold, use your child’s action plan; and help
them to blow their nose.
Avoid smoking—a known asthma trigger—and avoid having
your child in a house where someone smokes.
Here are some examples of common asthma triggers:
Review how to use the inhalers with your child’s doctor.
Develop tricks to help remind you to give the medications.
Your child’s doctor is there to help—they want to see how well
your child is doing and to review your child’s symptom control.
Together you and your doctor will discuss a new Asthma
Home Plan, with instructions for when your child’s asthma is
under control and when it is not well-controlled.
• should be used only if your
child is having symptoms
during an asthma attack/
with symptoms
• is typically albuterol with a
name like: Proventil, Pro-Air,
Ventolin, Xopenex
Child’s name
Today’s date
Doctor’s signature Date
Other:
Your “controller”
medicine is:
Your “rescue”
medicine is:
red sticker for
“rescue”
medicine
green sticker for
“controller”
medicine
What is this? This is a QR code. To use it, go to the app store on your
smartphone, search for ‘QR code readers’ and download the free app.
To learn more about asthma, scan this code with the app to go directly
to the Respiratory Health Association website. Or go to the link below:
www.tinyurl.com/asthmalib
Inhaler Spacer
Mask Nebulizer
3 Read the signs 4 Stay on top of asthma
1 Take your asthma medicine
Pills Liquid
1st
dose time/date
How much
How often
For how long
Your oral
steroid is:
Asthma discharge plan
Don’t wait! Call
with questions
Identify your
child’s asthma
triggers
Give
medications
as prescribed
Take your child
to the doctor
regularly
Inhaler Spacer
Mask Nebulizer
IllustrationsbyPaulaFalco
• Should be used only if your
child is having symptoms
during an asthma attack/
with symptoms
• examples include Pulmicort,
Flovent, Azmacort, Advair
• may be allergy medication,
such as Singulair and Associate

10. 26 J. Comp. Eff. Res. (2016) 5(1) future science group
Research Article Erwin, Martin, Flippin et al.
hang this up in my home” (item 4) or “I would prefer to
receive this document in the emergency room” (item 5).
Overall document preference was more equivocal when
statements raised issues that could be interpreted as
relating to their competency, such as “This document is
harder to read” or “This document is more confusing.”
The research team also encountered differences in lan-
guage use, with one participant, for example, selecting
the new tool as ‘more overwhelming’, as in overwhelm-
ingly good. Such responses raise important issues about
the wording of questions to fit target populations.
Discussion
In this report, we presented the methods and outcomes
of a three-phase process that employed various methods
of contextual inquiry in the design of CAPE, a novel
stakeholder-balanced asthma action plan for high-risk
African–American and Latino children with uncon-
trolled asthma for use on ED discharge. Several aspects of
CAPE are noteworthy, including the use of a design that
maximizes visual learning and individualization. More
important than the final tool, however, is the process
employed to create it. The formative process presented
here demonstrates a new multistakeholder driven meth-
odology to inform the development of interventions suit-
able for comparative effectiveness research. This method
is novel because it shifts the design process from one
that relies exclusively on teams of medical experts who
focus on content to multidisciplinary teams with exper-
tise in uncovering the context of use to inform content
requirements, which may also help to overcome barriers
to implementation in real-world clinical and nonclini-
cal settings. Contextual inquiry differs from standard
qualitative inquiry because it is designed to immerse the
investigator in the everyday practices of the informant,
rather than asking the informant to recall their experi-
ences, as standard interview or focus group methods do.
With informants and investigators both working in situ,
informants reveal with their behavior what they often fail
to recall when asked, and investigators build firsthand
experience with how informants engage in the activity
being studied. For the CAPE, as an example, contextual
inquiry revealed that complex conversations between
stakeholders were taking place unsupported by existing
materials. Designing for conversation guided content
development and format. We are now testing the effec-
tiveness of the asthma discharge tool on implementation
and clinical outcomes in the multicenter PCORI-funded
CHICAGO comparative effectiveness trial.
Comparative effectiveness research is intended to be
a response to the expressed needs of end-users about
which interventions are most effective for patients
Figure 5. Using the Gibson survey,clinicians and caregivers report higher levels of preference for the new
discharge tool, CAPE (CHICAGO Action Plan after ED discharge), compared with existing documents.
CHICAGO: Coordinated Healthcare Interventions for Childhood Asthma Gaps in Outcome.
Gibson survey results
Overall
1
4.8
3.1
2.3
4.4
3.2
4.6
4.7
3.4
2 3 4 5 1 2 3
3.9
4
4.8
4.7
4.6
3.5
3.8
5
Appearance
Usefulness
Content
Clinician document scores
(nurses and physicians; n = 12)
Caregiver document scores
(n = 8)
Average scores per category
Highest possible score = 5
CHICAGO discharge tool
Existing discharge tool

11. www.futuremedicine.com 27future science group
Engaging stakeholders to design a comparative effectiveness trial in children with uncontrolled asthma Research Article
under specific circumstances [1]. To our knowledge,
this is the first report to engage end-users in contextual
inquiry in designing asthma action tools for children,
their caregivers and clinicians providing medical care
in EDs. Contextual inquiry is an important addition
to comparative effectiveness research because it creates
a new form of evidence. By locating the research team
in the context of use, data is collected not just about
Figure 6. The card sorting activitysupports findings from the Gibson survey, indicating greater clinician
preference for the new discharge tool, CAPE (CHICAGO Action Plan after emergency department discharge).
CHICAGO: Coordinated Healthcare Interventions for Childhood Asthma Gaps in Outcome.
1. I feel more confident using this document
Physician responses
(max = 6)2. I think this document is more likely to facilitate
constructive conversations between Emergency
Department clinicians and caregivers
3. I would prefer to use this document with my
patients
4. I would rather use the visuals in this document to
communicate essential information to my patients
in the emergency department
5. I think this document is more respectful of my
time with my patient
6. I think this document provides more guidance for
my patients after discharge
7. I think this document is more accessible for
caregivers with low reading levels
8. I think this document is more effective in helping
my patients understand their medications
9. I think this document represents a more
standardized protocol for care
10. I think this document will have greater impact
on my patient’s health
11. I feel this is a more serious medical document
1 2 3 4 5 6
Nurse responses
(max = 6)
Card sorting scores: clinicians
Aggregated clinician responses (n = 12)
Document A (CHICAGO discharge tool)
Document B (existing tool)
Both documents
Neither document

12. 28 J. Comp. Eff. Res. (2016) 5(1) future science group
Research Article Erwin, Martin, Flippin et al.
patient practices, but how those practices are shaped by
interactions with others, how practices become embed-
ded (or not) in everyday activities and responsibilities
and how practices are negotiated against the inevitable
disruptors of everyday life that compete for patients’
time and attention. This evidence is especially produc-
tive when seeking to tailor interventions to populations
and circumstances for better uptake and adherence.
Additionally, contextual inquiry is equally productive
when applied to ED clinical staff, who report struggling
with tools and protocols that do not seem designed to
fit the complex operational realities of the ED and its
many users. Indeed, results of quantitative and qualita-
tive assessments suggest substantial preference among
clinical staff for the new tool’s ease of use and fit with
desired caregiver conversations, compared with existing
tools used in the ED.
By design, our new discharge tool shifts the commu-
nication paradigm in the ED from delivery of informa-
tion (from expert to novice) to supporting collaborative
Figure 7. The card sorting activitysupports findings from the Gibson survey,indicating greater caregiver
preference for the new discharge tool.
CHICAGO: Coordinated Healthcare Interventions for Childhood Asthma Gaps in Outcome
1. I think that with this document, my family would
visit the emergency department less
2. This document is easier to read
3. This document is more clear about which action I
should take first after the emergency department
Negative assessment
statements; lower
scores are better
Card sorting scores: caregivers
Aggregated caregiver responses (n = 8)
Responses
Positive assessment
statements; higher
scores are better
4. I am more likely to hang this document up in
my home
5. If I was in the emergency room with my child,
I would prefer to receive this document
6. This document is more approachable
7. This document is more organized
8. This document is more worthy of my time
9. This document is better for my family
10. This document is more overwhelming
11. This document is more confusing
Document A (CHICAGO discharge tool)
Document B (existing tool)
Both documents
Neither document
1 2 3 4 5 6 7 8

13. www.futuremedicine.com 29future science group
Engaging stakeholders to design a comparative effectiveness trial in children with uncontrolled asthma Research Article
conversation (between equally engaged stakeholders).
This is an important shift because it institutional-
izes what some clinicians in this study have already
acknowledged: that communication is more effective
when built with caregivers through an exchange of
information in the moment than ‘delivered’ to them in
a monologue or handout. The new discharge tool was
noted by clinical staff as a tool that ‘at least starts the
conversation’, ‘opens up the conversation better’ and
‘is more interactive as you go through it with people’.
Shifting to a collaborative model in the ED also creates
new conditions that encourage caregivers to see them-
selves as partners in asthma control. Current ED expe-
riences contribute to caregiver belief that an asthma
attack is an event best fixed by a doctor in an ED; a
collaborative approach can stress asthma as a chronic
condition best managed by caregivers at home.
While our project offers multiple strengths, our
approach to engagement was limited to address-
ing the needs of elementary school-age high-risk
African–American and Latino children with uncon-
trolled asthma presenting to the ED. This focus was
deliberately given the goals of our PCORI-funded
CHICAGO comparative effectiveness trial. However,
the discharge tool may not be sufficiently optimized
for other populations (e.g., preschoolers, adolescents,
adults). While we did include physicians and nurses,
our engagement process did not include other clini-
cians who provide care to children with uncontrolled
asthma (e.g., respiratory therapists, social work-
ers, pharmacists). Moreover, most of our children
and their caregivers were low income and African–
American. The methods employed in this project offer
a template for future work that could address the needs
of other end-user populations, including those with
other conditions (e.g., diabetes, hypertension, sickle
cell disease).
Conclusion
We present the application of contextual inquiry of end-
user stakeholders to design a novel ED-based asthma
action plan (CAPE) for a comparative effectiveness trial
in asthma. We speculate that engaging multiple stake-
holders in the design of a discharge tool ‘fit for purpose’
offers a promising approach for improving asthma self-
management skills and improving asthma outcomes in
African–American and Latino children presenting to
the ED for uncontrolled asthma. Our on-going PCORI-
funded CHICAGO comparative effectiveness trial will
evaluate the effects of employing CAPE (vs usual care)
in the ED on implementation and clinical outcomes.
Acknowledgements
The authors gratefully acknowledge the help of T MacTav-
ish, IIT Institute of Design; JT Senko, JH Stroger, Jr Hospital of
Cook County; CJ Lohff, Chicago Department of Public Health;
ZE Pittsenbarger, Ann and Robert H Lurie Children’s Hospital
of Chicago; J E Kramer, Rush University Medical Center; H
Margellos-Anast, LS Zun, Mount Sinai Hospital; SM Paik and
J Solway, University of Chicago; ML Berbaum, N Bracken, and
HA Gussin, for their role in the development of the CHICAGO
comparative effectiveness trial. The authors thank L Sanker for
her help in the development and conduct of focus groups. The
authors also thank the families and the staff in the CHICAGO
ED clinical centers and partner organizations who contributed
their time to make this study possible.
Financial & competing interests disclosure
The study was sponsored by the Patient-Centered Outcomes
Research Institute (contract #AS-1307-05420). The authors
have no other relevant affiliations or financial involvement
with any organization or entity with a financial interest in or fi-
nancial conflict with the subject matter or materials discussed
in the manuscript apart from those disclosed.
No writing assistance was utilized in the production of this
manuscript.
Ethical conduct of research
The authors state that they have obtained appropriate institu-
tional review board approval or have followed the principles
outlined in the Declaration of Helsinki for all human or animal
experimental investigations. In addition, for investigations in-
volving human subjects, informed consent has been obtained
from the participants involved.
Executive summary
Designing interventions to improve communication in comparative effectiveness research
• Multistakeholder driven design methods of contextual inquiry can be successfully employed to inform the
development of interventions for comparative effectiveness research.
• Our approach shifted the design process from one that relies exclusively on teams of medical experts who
focus on content to multidisciplinary teams with expertise in uncovering the context of use to inform
content requirements, which may also help to overcome barriers to implementation in real-world clinical and
nonclinical settings.
• The new discharge tool or CAPE (CHICAGO Action Plan after emergency department discharge) shifts the
communicationparadigm in the emergency department from delivery of information (from expert to novice)
to supporting collaborative conversation (between equally-engaged stakeholders).

14. 30 J. Comp. Eff. Res. (2016) 5(1) future science group
Research Article Erwin, Martin, Flippin et al.
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