JMIR FORMATIVE RESEARCH

Theis et al

Original Paper

Considerations of Privacy and Confidentiality in Developing a
Clinical Support Tool for Adolescent Tobacco Prevention:
Qualitative Study
Ryan P Theis1, MPH, PhD; Ali M Malik2, BSc; Lindsay A Thompson1,3, MD; Elizabeth A Shenkman1, PhD; Lori
Pbert4, PhD; Ramzi G Salloum1, PhD
1

Institute for Child Health Policy, Department of Health Outcomes and Biomedical Informatics, University of Florida, Gainesville, FL, United States

2

College of Medicine, University of Florida, Gainesville, FL, United States

3

Department of Pediatrics, University of Florida, Gainesville, FL, United States

4

Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA, United States

Corresponding Author:
Ryan P Theis, MPH, PhD
Institute for Child Health Policy
Department of Health Outcomes and Biomedical Informatics
University of Florida
2004 Mowry Road, Suite 2252
Gainesville, FL, 32610
United States
Phone: 1 352 294 5973
Email: rtheis@ufl.edu

Abstract
Background: Electronic clinical support tools show promise for facilitating tobacco screening and counseling in adolescentwell-care. However, the application of support tools in pediatric settings has not been thoroughly studied. Successfully implementing
support tools in local settings requires an understanding of barriers and facilitators from the perspective of both patients andproviders.
Objective: This paper aimed to present the findings of a qualitative study conducted to inform the development and implementationof a support tool for adolescent tobacco screening and counseling in 3 pediatric clinics in North Florida. The primary objectiveof the study was to test and collect information needed to refine a tablet-based support tool with input from patients and providers
in the study clinics.
Methods: A tablet prototype was designed to collect information from adolescents on tobacco susceptibility and use before
their well-care visit and to present tobacco prevention videos based on their responses. Information collected from adolescentsby the support tool would be available to providers during the visit to facilitate and streamline tobacco use assessment andcounseling components of well-care. Focus groups with providers and staff from 3 pediatric clinics (n=24) identified barriers andfacilitators to implementation of the support tool. In-depth interviews with racially and ethnically diverse adolescent patients who
screened as susceptible to tobacco use (n=16) focused on acceptability and usability of the tool. All focus groups and interviews
were audio-recorded and transcribed for team-based coding using thematic analysis.
Results: Privacy and confidentiality of information was a salient theme. Both groups expressed concerns that the tool’s audio
and visual components would impede privacy and that parents may read their child’s responses or exert control over the process.
Nearly all adolescents stated they would be comfortable with the option to complete the tool at home via a Web portal. Most
adolescents stated they would feel comfortable discussing tobacco with their doctor. Adolescent interviews elicited 3 emergent
themes that added context to perspectives on confidentiality and had practical implications for implementation: (1) purity: an
expressed lack of concern for confidentiality among adolescents with no reported history of tobacco use; (2) steadfast honesty:
a commitment to being honest with parents and providers about tobacco use, regardless of the situation; and (3) indifference: aperceived lack of relevance of confidentiality, based on the premise that others will “find out anyway” if adolescents are using
tobacco.

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Conclusions: This study informed several modifications to the intervention to address confidentiality and introduce efficiency
to well-care visits. The support tool was integrated into the electronic health record system used by the study clinics and modified
to offer videos to all adolescents regardless of their tobacco use or susceptibility. Future studies will further test the acceptabilityof the intervention in practice.
(JMIR Form Res 2019;3(2):e12406) doi: 10.2196/12406
KEYWORDS
clinical decision support; adolescent; primary care; tobacco use; confidentiality; implementation science; qualitative research

Introduction

turn lead to reductions in tobacco use initiation and promote
tobacco cessation.

Background

This paper has presented the findings from a qualitative pilot
study conducted to refine the design and content of the support
tool and understand the context needed to effectively implement
it in local clinical settings. In particular, we sought to elicit theperspectives of PCPs and adolescent patients on theconfidentiality of information that adolescents provide about
their tobacco use in well-care visits. Triangulating the responsesof both types of end users, this study informed important
modifications to the support tool to address concerns about
privacy and improve the support tool’s acceptability andfeasibility for implementation.

Primary care providers (PCPs) play an important role inscreening, counseling, and early intervention for adolescent
tobacco use [1]. Brief interventions by PCPs, as recommended
by the United States Preventive Services Task Force (USPSTF),
can reduce the risk of tobacco initiation in adolescents [2,3].
However, PCP practices for tobacco screening and counselingare inconsistent, with studies reporting low rates of physician
adherence to evidence-based practices for smoking cessationand for routine screening of adolescent electronic cigarette(e-cigarette) use [4,5]. Barriers to effective counseling by PCPs
can include limited time and lack of privacy during the visit,
whereas possible facilitators include checklists for adolescents
to complete before the visit and assurances of confidentiality
by the PCP [6,7].
Electronic clinical support tools show promise for promoting
adolescent tobacco screening and counseling, in part because
they help clinics overcome barriers and leverage facilitators towell-care. Such tools have become increasingly common in
behavioral health interventions as a means of facilitating
patient-provider communication and ensuring thorough andconsistent application of evidence-based practices [8]. Although
there is evidence for the effectiveness of support tools foradolescent substance abuse screening in primary care [9], themore general application of support tools to the adolescentpopulation remains to be thoroughly explored and documented.
Furthermore, the successful implementation of support tools
can depend on their capacity to integrate into clinical workflow,
appropriateness to patient populations, competing clinicalpriorities, and other local contextual factors [10].

Objectives
To address the challenges that PCPs face with regard to limited
time in well-care visits and concerns about privacy andconfidentiality, we developed an electronic tool to support PCPs
in adolescent tobacco screening and counseling. The tool
includes a survey about tobacco use, susceptibility, and concernsthat adolescents can complete before their well-care visit,
educational videos tailored to the responses they provide, andelectronic transmission of their responses to their PCP tofacilitate counseling. These design elements can help overcome
gaps in the consistent application of evidence-based practices
for adolescent tobacco screening and counseling, which can in

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Methods
Setting
This study was conducted in collaboration with pediatric primarycare clinics in the University of Florida (UF) Health System,
which serve urban and rural communities in North Florida andrepresent a diverse patient population with regard to income,education, and race/ethnicity [11]. The UF Health System is amember of the OneFlorida Clinical Research Consortium—aresearch collaborative that includes a centralized cooperative
institutional review board, shared governance, andimplementation support from a network of community practicefacilitators and local providers [12].

Intervention
Following a stakeholder engagement approach that included
methodologists, clinicians, and community representatives, wedeveloped an initial prototype of an electronic tobacco screening
tool, which includes a questionnaire for adolescents to complete
before their scheduled well-care visit (see prototype slides inMultimedia Appendix 1). The questionnaire begins with an
initial screening to assess the adolescent’s history of tobaccouse, collecting separate information on 5 types of nicotine andtobacco product classes (cigarettes, cigars/cigarillos, hookah,smokeless tobacco, and e-cigarettes), as shown in Figure 1. For
nonusers, the tool assesses susceptibility to any tobacco
products, indicated by a lack of firm commitment to avoid
tobacco use [13]. Specifically, the susceptibility screener asks
whether the adolescent would use a cigarette, e-cigarette, orother tobacco product (1) if offered by a friend, (2) at any timein the next 12 months, and (3) 5 years from the time ofscreening.

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Figure 1. Screenshot of the electronic clinical support tool: tobacco use screener.

Although the questions in the screening tool are similar to what
may be asked in a standard preclinical visit survey, theircollection in electronic format allows for additional functions
to facilitate tobacco screening and counseling—including
options to complete the tool using a Web-based portal (outside
the clinical setting), the presentation of educational content, andtransmission of responses to PCPs. For both users andsusceptible nonusers, the tool presents a list of consequencesof using tobacco products and asks them to rate whichconsequences they are most likely to ask their doctor about (seeexample in Figure 2).
Then, based on their pattern of responses, the tool presents 1
brief educational video from the US Food and Drug

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Administration tobacco prevention campaign, which can
supplement and optimize face-to-face counseling provided by
the PCP [14]. For adolescents with a history of tobacco use, thevideo applies to the tobacco product that the adolescent selected;
in the case of multiple selected products, the selection algorithm
prioritizes videos based on relative harm (eg, combustible
products taking precedence over e-cigarettes). For nonusers
who screen as susceptible to tobacco, the video is based on theirselection of tobacco use consequences. The decision to limit
the tool to a single video was based on the need to keep thescreening brief and minimize user burden. Finally, questionnaire
responses are made available to providers to prime them tofurther counsel adolescents on tobacco use.

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Figure 2. Screenshot of the electronic clinical support tool: tobacco consequences rating.

Data Collection
The support tool was further tested through collaboration withpediatric clinics in the UF Health system. Our qualitative
approach included (1) focus groups with providers and staff toidentify barriers and facilitators to implementation and (2)in-person qualitative interviews with adolescent patients to test
the usability of the tool. The focus groups and interviews wereconducted sequentially between July 2016 and June 2017 toobtain provider and patient perspectives on a working prototypeof the tool in iterative stages.
The provider focus groups were conducted in 3 different clinics,
with topics selected based on Proctor’s Framework for
Implementation Outcomes—focusing specifically on
acceptability, appropriateness, adoption, and feasibility of thetool within the context of clinical workflow [15]. All focus
groups included a presentation of the tool to participants andwere facilitated by the study’s qualitative investigator. Focus
groups lasted 45 min on average and were audio-recorded forlater transcription and analysis.
In-depth interviews were conducted with adolescents (aged 12
to 17 years) recruited from the UF Adolescent Clinic, which
serves racially and ethnically diverse patients with a high rateof Medicaid coverage (80%) [11]. Adolescents meeting the age
criteria who had a visit to the clinic during the study period
were eligible for inclusion and invited to participate by thestudy’s clinician investigator. All assenting patients were latercontacted by telephone and administered a brief tobacco use
history and susceptibility screener (the same screeners used in
the support tool, as shown in Multimedia Appendix 1). Those
who indicated a history of tobacco use or nonusers who screened
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as susceptible to tobacco use were scheduled for in-person
interviews. Adolescents with no history of tobacco use and who
did not screen as susceptible were not eligible for the study;
this exclusion was made because many important features of
the tool we sought to test—including the tobacco use
consequence rating and the educational video—are completed
only by adolescents who report using or being susceptible totobacco.
Interview topics included (1) adolescents’ perceptions andattitudes about tobacco products, (2) their personal experiencesusing or being offered tobacco products, and (3) their opinionsof the prototype support tool. Discussions about the tool focusedon the ease of use, comprehension of content, and assessmentof acceptability and appropriateness to the target population.
Adolescents were asked to discuss how comfortable they would
be talking with their doctor about using tobacco, completingthe screening in the presence of their parent (eg, in the clinic’s
waiting room), and completing the screening in a more private
setting (eg, using a Web-based patient portal). Interviews were
led by 2 interviewers trained in qualitative data collection
methods and were audio-recorded for later transcription andanalysis. Parents provided informed consent for their child’s
participation but were not physically present during theinterviews. The research protocol was approved by the UF
Institutional Review Board.

Data Analysis
For both focus group and interview transcripts, analyses
involved an initial phase of deductive coding (using categories
derived from the moderator guides), a secondary phase of
inductive coding (to identify emerging themes), and an
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Theis et alinterpretive phase in which findings from both data types weresynthesized [16]. This approach allowed for the iterative
development of separate codebooks for the provider focus
groups and adolescent interviews, whereby transcripts were
back-coded with any new themes identified during the inductive
phase. To ensure high interrater reliability, each transcript wascoded independently by 2 trained coders and then reviewed inteam meetings to discuss and obtain consensus on coding
discrepancies [17]. Team meetings included, at minimum, bothcoders and a third study investigator who was familiar with thecontent but had not participated in coding. Independently codedtranscripts were reviewed side by side, and all coding
discrepancies were discussed and resolved by consensus. In theevent that the coders could not come to a consensus on aparticular coding discrepancy, the third team member made thefinal determination. The analysis was conducted using NVivo
11 (QSR International, 2015).

tool (in tablet format) to minimize disruption of clinicalworkflow. Providers in the first 2 focus groups voiced concernswith this approach, calling upon their past experiences withpatient intake forms. As 1 provider remarked:

In addition, a framework analysis method was used to organize
the findings from the adolescent interviews [18]. A summary
template was developed for initial review of transcripts, in which
content could be abstracted for domains specific to the study
aims (eg, support tool acceptability, message relevance, andcomfort discussing with doctor). Completed summaries werereviewed in regular team meetings and compiled into a
descriptive participant-by-domain matrix [19]. As acomplementary analytic strategy, the team reviewed the final
matrix to assess patterns in domain responses across interview
participants.

We do a physical survey that 99% of the time, theparents are watching them do. So, I am not sure how
effective it is, and I am not sure how honest they are…
Then, you have a video that now confirms that they
probably said that they smoked and that the parent
can now hear, even if the teenager can somehow hide
it from them. I would worry about that as a barrier.
As a possible solution, providers proposed separating theadolescent from the parent before administering the screener.
However, this came with its own concerns, as some clinics may
not have a separate room or area where adolescents could
complete the tool privately, posing an important barrier tobroader implementation. More relevant to the question ofconfidentiality, some providers also noted that parents would
question why their child was being brought aside and what thestaff were asking them:

To facilitate the final, interpretive phase of the analysis, queries
for codes related to support tool acceptability andappropriateness (which applied to both study populations) were
produced for the provider and adolescent transcripts separately.
These queries were reviewed for emergent themes relevant to
the 2 types of implementation outcomes, and commonalities
and contrasts in themes were documented between providers
and adolescents.

Results
Provider Perspectives
The focus groups were each attended by 7 to 9 participants (24participants overall), including physicians, midlevel providers(physician assistants and nurse practitioners), and office staff(Table 1).
Confidentiality of patient information was a salient theme inall focus groups. In early phases of the study, the waiting room
was the setting proposed for adolescents to complete the support

Most of the time we give out our handout, it’ssupposed to be filled out by the patient. But the parent
takes it and they fill it out for them. So how do we
prevent that from happening?
In cases where adolescents might complete the screening on
their own, providers still had concerns about confidentiality,
noting that parents would be able to see the tablet screen(including their child’s responses to the questionnaire) and hear
the videos. They expected that adolescents would not respondhonestly to the tobacco susceptibility and history questions.
This issue raised questions about the feasibility of theintervention:

We have parents who respect that, and we haveparents who absolutely get very angry if we starttalking to their teenager about keeping things fromthem.
Another proposed solution was to integrate the tool into a
Web-based patient portal that was at the time being expanded
to adolescent populations in the UF Health System pediatricclinics. The portal would allow adolescents to complete thescreening on their own computer or mobile device at home
before their visit. For adolescent patients aged 12 years andolder who have enrolled in the portal, only they would haveaccess to their information on the portal, allowing for the privacy
necessary to ensure confidentiality.

Table 1. Provider focus group participants.
Focus group participants

Clinic number 1

Clinic number 2

Clinic number 3

July 2016

April 2017

June 2017

Physician (n)

3

3

3

Registered nurse/Licensed practical nurse (n)

4

2

3

Advanced practice registered nurse/Physician assistant (n)

0

1

2

Office staff (n)

0

2

1

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On the basis of this feedback, the support tool was modified to
be used through the portal —allowing adolescents the option
to complete the tool at home or in the office using the original
tablet intervention. In both cases, the tool was integrated withthe electronic health record (EHR) system used by the clinics,
allowing providers real-time access to the information provided
by the adolescents. These modifications were tested in the third
provider focus group, who generally perceived them as positive.
One provider remarked on several potential advantages of theintervention, including the promotion of clinical efficiencies:

Finally, providers in all focus groups noted that certain
behavioral characteristics of adolescents could impede thefeasibility of the intervention, regardless of the setting or modeof administration. One provider commented on adolescents’
reluctance to self-report weaknesses or to talk about risky
behaviors—raising the question of whether the more private
Web portal mode would actually encourage more honest
responses. Other providers suggested that some adolescentswould become bored with the tool, as evident in the following
exchange:

I think that adolescents are going to feel… like theirprivacy is better protected if they can [do it] on theiriPhone, their iPad, or at home prior to the clinic
visit… It’s an ultimate timesaver. It’s not adding
something if it’s more efficient. It has to be done only
once. It auto-populates our charts and can be done
beforehand when a child’s at home and potentiallyin a more private situation. We might get moreaccurate information as well.
Nevertheless, providers in the third focus group maintained
concerns related to parents’ access to information. Although
the portal is confidential for adolescents, parents may still“bully” their children to gain access and they would be more
likely to see the responses on a larger screen. With regard to
the waiting room intervention, providers stated that some parents
would offer to complete the screening themselves, on behalf of
their children—echoing concerns expressed in the earlier focus
groups.

After four or five screens, they’re probably going tocheck out at that point. They’re just going to beclicking. [Provider 1]
Then they’re just going to start Christmas Treeing,trying to get through it. [Provider 2]

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Adolescent Perspectives
Among 128 adolescent patients who initially agreed toparticipate, 65 could not be reached after 3 attempts (51%), 46
were ineligible to participate because they were nonsmokers
who did not screen as susceptible to tobacco (36%), 1 refused
to participate (1%), and 16 participated in an interview (13%).
Participants represented a fairly even mix of female and malepatients (56% and 44%, respectively) and included patients ofblack (38%), Hispanic (25%), white (19%), and other (19%)
racial and ethnic groups (Table 2). All participants initially
screened as being susceptible to tobacco or nicotine products;
however, only 2 (13%) reported any active tobacco use during
the interview.

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Table 2. Adolescent interview participant characteristics.
Characteristics

Statistics, n (%)

Age (years)
12

1 (6)

13

4 (25)

14

2 (13)

15

3 (19)

16

4 (25)

17

2 (13)

GenderFemale9 (56)

Male

7 (44)

Race and ethnicity
Black, non-Hispanic

6 (38)

Hispanic

4 (25)

Other, non-Hispanic

3 (19)White, non-Hispanic

3 (19)

Ever used tobacco or nicotine productNo

14 (88)Yes

2 (13)

Ever been offered tobacco or nicotine productNo

10 (63)Yes

6 (38)

Comfortable discussing tobacco with doctor
No

0 (0)

Yes

9 (56)

Maybe

1 (6)

Unknowna

6 (38)

Comfortable using support tool near parentsNo

4 (25)Yes

12 (75)

Would complete support tool honestly in a home setting

a

No

1 (6)

Yes

15 (94)Six adolescents were not asked whether they would feel comfortable talking with their doctor about tobacco after using the support tool.

Using the Tool in Clinical Settings
Nearly all adolescents stated they would be less comfortableusing the tool in the clinic’s waiting room than in a more private
setting. Moreover, 2 participants specifically expressed concernswith the tool’s media components if they were to use it in thewaiting room. Both remarked that the sounds and images of thevideo would be noticed by others, which might discourage themfrom responding honestly. However, 1 adolescent acknowledgedthat once in the examination room, the tool could help
adolescents who are uncomfortable with face-to-face
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interactions. She noted that, by asking many of the questions
about tobacco use that a doctor might otherwise ask, the tool
could help ease and streamline the visit:That’ll get them away from talking face-to-face withthe problem they might be having, and then the doctor
or your counselor going straight to the questions theyneed to be asking. [Participant 5, aged 14 years,
female, black]
Most adolescents stated that they would feel comfortablediscussing tobacco with their doctor. Several mentioned they
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were already comfortable with their doctors, suggesting that alevel of rapport necessary for honest discussions had been built
during the course of previous visits with the same provider.
Others stated they would disclose tobacco use with their doctor
because they expected confidentiality or because they considereddisclosure to be in their best interest. When asked why he would
be comfortable talking about tobacco with his doctor, 1adolescent replied:
Because I will probably most likely learn something
new. And it would give me a better chance tounderstand why people like to do it. [Participant 1,
aged 17 years, male, Hispanic]

Using the Tool at Home
Nearly all adolescents stated a preference for using the tool via
the Web portal at home. Some indicated that completing thescreening at home would afford them more privacy andencourage them to respond more honestly. When asked her
opinion of using the tool at home, 1 adolescent responded
positively, stating:Because I feel like at a doctor’s office or somewhere
else you’re always like, “Oh, who’s watching me?”And at home you have the privacy of your own.
[Participant 6, aged 17 years, female, Hispanic]
However, 1 adolescent stood out from the others inacknowledging that the in-home portal option could lead to aless honest response. A private setting is also an unsupervised
setting, with little to encourage adolescents to actually engage
with the tool, read its content, and provide thoughtful responses.
I wouldn’t think that I would answer them morehonestly at home, but rather click and skim throughit… They don’t have people asking, really, for thetruth, and they can just be scrolling through it andclicking whatever they think is right. [Participant 1,
aged 17 years, male, Hispanic]

Nuances of Disclosure—Purity, Steadfast Honesty, andIndifference
In many cases, adolescents did not agree that the Web-based
option would encourage them to respond morehonestly—primarily because they would already have responded
honestly in any format or setting. Overall, 3 distinct themes
emerged that helped to explain this finding. First, a theme ofpurity was observed among the majority of adolescentparticipants who were never smokers, many of whom statedthey had “nothing to hide.” Anticipating no potentially sensitive
responses to the tool, these adolescents reported they would beequally comfortable completing it in the waiting room or athome. The presence of parents was not a barrier because parents“already know” how their children would respond to thequestions about personal use. Several adolescents acknowledgedthat although they would have no hesitations in using the tool,
other peers who used tobacco might have hesitations. As 1
adolescent stated:
I know I wouldn’t answer any differently, but friendsof mine probably would, and other people my age just‘cos they have more to hide about it. I don’t really
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Theis et alcare much ‘cos I’m not smoking... Their parents – ifthey see anything that they’ve answered, they could
get in trouble and just the presence of their parents
being there would be intimidating for them.
[Participant 3, aged 16 years, female, white]
Second, many participants commented on the value of steadfast
honesty—a commitment to provide honest responses regardlessof the situation. Steadfast honesty was connected to positive
relationships with parents and with perceptions of well-being.
As 1 adolescent stated:
I feel like nobody should be afraid to talk about
things… It’s better to talk about things to people
instead of holding it in. [Participant 14, aged 16 years,
female, other]
Third, several adolescents expressed a sentiment of indifference
toward privacy and confidentiality of sensitive information.
Some stated that they would respond honestly because they
were not concerned with who might read their responses. Others
remarked that their parents were “nosy” and would find out
their responses anyway. As 1 adolescent remarked:
If I smoke tobacco, I would tell them because, I mean,
they’re my parents. Eventually, they’re gonna findout. Well, it doesn’t matter if I did it or didn’t, eitherway, they will know. [Participant 2, aged 16 years,
male, Hispanic]

Discussion
Principal Findings and Comparison With Previous
Work
Both providers and adolescents in this study stressed theimportance of privacy and confidentiality for successful
implementation of the clinical tool. Confidentiality wasconsidered essential for encouraging adolescents to use thescreener and to ensure honest responses among those whocompleted it. Themes relevant to the parental influence also
emerged, including the control exerted by parents over thescreening process. These findings are consistent with a similar
qualitative study that found confidentiality and parental
influence to be important in adolescent perspectives ofcomprehensive risk assessments [20].
When used in a waiting room in tablet format, the tool has
features that can easily be noticed by others, and the presenceof parents may lead adolescents to underreport their tobacco
use and risk. Consequently, the majority of adolescents
expressed a preference for the Web-based version and reported
that they would respond to the screener more honestly at home.
This contrasts with findings of a study by Jasik et al [21], inwhich adolescents preferred completing behavior screening
using a tablet in the waiting room, rather than at home. It is
likely that adolescents’ preference for the Web-based tool in
our study is related to the more intrusive audio and video
components of the intervention. A recent study on the same
confidential adolescent portal used in our study (MyChart) also
found that adolescents consistently used the portal after
enrollment [22]. Although based on the response of a single
adolescent, there remains the possibility that unsupervised use
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JMIR FORMATIVE RESEARCHof the Web-based tool at home may not result in complete orhonest responses, which is a concern that warrants further study.
Some providers also expressed concerns that parents mightcomplete the screener for their child or question the child’s needfor privacy. Although the prospect of a Web-based version
alleviated some of these concerns, some providers maintainedthat parents might “bully” their children to gain access to theportal. However, the extent to which these actions by parents
may constitute the norm is unclear. A study by Miller et al [23]of parental perspectives on factors influencing adolescentcommunication with physicians found that most parents valued
their adolescent having time alone with their physician.
As the majority of adolescent participants were never-smokers,
it is unsurprising that they would express few concerns about
confidentiality of information about their smoking history.
However, these participants screened as tobacco-susceptible
for the study, likely making them a higher-risk group. Thissuggests that adolescents may perceive less risk in disclosing
their intent to use tobacco, supporting the inclusion ofsusceptibility questions in screening tools. Assessment ofsusceptibility is important and should be utilized in future
screening tools, given that greater than one-quarter ofnever-smoking adolescents are susceptible for future tobacco
use as adults and rates of susceptibility to tobacco products
increase with age [24].
The theme of steadfast honesty clarifies adolescent perceptionsof disclosure in clinical settings, as many expressed acommitment to provide honest responses regardless of thesetting or situation. Most stated they would feel comfortablediscussing tobacco with their doctor—a finding that is consistent
with the USPSTF recommendation for PCP-led tobacco
interventions [2]. This study revealed pathways that may
encourage adolescents to discuss tobacco with their doctors,
including having a positive patient-provider relationship, an
understanding of the value of disclosure for health promotion,
and a curiosity about the physiological effects of tobacco andthe psychosocial factors behind its use. Regardless of their
tobacco use status, wellness visits may represent a learning
opportunity for adolescents that can help them make healthierchoices. Furthermore, it is possible that the tool may itself
increase adolescents’ trust in their doctors and foster morepositive relationships—an association that has been found insimilar interventions with adult populations and that requires
further study among adolescents [25].
Several modifications to the intervention were made from ouriterative approach. First, the tool is now integrated into the EHR
system used by the study clinics, introducing efficiency to thewell-care visit and adding value to the learning health system.
The tool is bundled with the American Academy of Pediatrics
Bright Futures health risk assessment—an important adaptationthat streamlines the intervention with existing clinical practice.
Second, the tool offers videos to all adolescents regardless of
their tobacco use or susceptibility. Patients and their parents
learn that the videos are offered to all clinic patients as part ofits preventive services, thereby mitigating concerns about
confidentiality.

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Theis et alStrengths and Limitations
This study has several strengths and limitations. The
perspectives of multiple stakeholders were consideredthroughout the intervention’s design, enhancing its utility.
Furthermore, triangulation of sources with both patients andproviders increased credibility of the qualitative findings,
permitting a comprehensive understanding of acceptability andperceived feasibility of the intervention by key users [26]. These
data were collected before implementation, which allowed
stakeholder feedback to increase the intervention’s chances ofsuccess. However, this also introduced a limitation in thatconcerns by participants had not yet been tested or validated inpractice. Future phases will study the acceptability of theintervention after implementation, permitting a more focusedevaluation of the degree to which confidentiality may be aconcern.
The study included purposeful samples of participants, allowing
for in-depth understanding of the perspectives of stakeholders
in clinical settings where the intervention is targeted. Although
the generalizability of findings to other populations is not an
aim of qualitative work, it is important to acknowledge how
findings may or may not be transferable to similar, specificcontexts [26,27]. The decision to integrate the tool with theadolescent’s EHR was appropriate for this study’s clinics, which
are part of a large academic health center. In clinical settings
that are not part of a similar collaborative, providers may beless willing to support such integration out of concerns forprotecting confidentiality of sensitive information within the
EHR [28].
The study’s focus on adolescents who screened as susceptible
was a strength. However, our findings were limited by the small
number of adolescents who reported any history of tobacco
use—an important subgroup whose perspectives may not havebeen sufficiently explored. Furthermore, because thisinformation was based on self-reporting, the extent to whichsmoking history may have been underreported is unknown.
Thematic saturation was reached within the 16 adolescents
overall, with no new themes emerging after review of the fifthtranscript. However, it is unlikely that saturation was reachedspecifically for adolescents who reported a history of tobaccouse. This subgroup will be more fully included in future phasesof this study.

Conclusions
In summary, we found commonalities and differences between
provider and patient perspectives on the confidentiality of
information collected in an electronic clinical support tool foradolescent tobacco screening and counseling. The resulting
intervention allows PCPs to have expedient access to reliable
information on susceptibility and tobacco use history duringadolescent well-care visits. The intervention can both enhancecounseling for active tobacco users and provide content topotentially prevent tobacco uptake among adolescents who
screen as susceptible. Future studies are planned to further test
the acceptability of the intervention in practice and will include
adolescents across the full spectrum of tobacco use andsusceptibility.

JMIR Form Res 2019 | vol. 3 | iss. 2 | e12406 | p. 9
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Theis et al

Acknowledgments
Research reported in this publication was supported in part by the OneFlorida Clinical Research Consortium, funded by thePatient-Centered Outcomes Research Institute (award number CDRN-1501-26692), in part by the OneFlorida Cancer Control
Alliance, funded by the Florida Department of Health James and Esther King Biomedical Research Program (award number
4KB16), and in part by the UF Clinical and Translational Science Institute, which is supported in part by the NIH National Center
for Advancing Translational Sciences (award number UL1TR001427). The content is solely the responsibility of the authors anddoes not necessarily represent the official views of the Patient-Centered Outcomes Research Institute , its Board of Governors
or Methodology, the OneFlorida Clinical Research Consortium, the UF’s Clinical and Translational Science Institute, the Florida
Department of Health, or the National Institutes of Health. Publication of this paper was funded in part by the UF Open AccessPublishing Fund.

Conflicts of Interest
None declared.

Multimedia Appendix 1
Tobacco counseling support tool prototype used in focus groups and interviews.
[PPTX File, 2MB-Multimedia Appendix 1]

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Abbreviations
e-cigarette: electronic cigarette
EHR: electronic health record
PCP: primary care provider
UF: University of Florida
USPSTF: United States Preventive Services Task Force

Edited by G Eysenbach; submitted 03.10.18; peer-reviewed by A Majmundar, M Baghernia; comments to author 06.03.19; accepted
24.03.19; published 28.04.19
Please cite as:
Theis RP, Malik AM, Thompson LA, Shenkman EA, Pbert L, Salloum RG
Considerations of Privacy and Confidentiality in Developing a Clinical Support Tool for Adolescent Tobacco Prevention: Qualitative
Study
JMIR Form Res 2019;3(2):e12406
URL: http://formative.jmir.org/2019/2/e12406/
doi: 10.2196/12406
PMID: 31066687
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Theis et al©Ryan P Theis, Ali M Malik, Lindsay A Thompson, Elizabeth A Shenkman, Lori Pbert, Ramzi G Salloum. Originally publishedin JMIR Formative Research (http://formative.jmir.org), 28.04.2019. This is an open-access article distributed under the termsof the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use,
distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly
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