Information Visualization to Improve Pain Communication Between Providers, Interpreters, and Patients With Limited English Proficiency
Phase: NA
Conditions: Communication, Pain
Sponsor: University of Wisconsin, Madison

 
 
Information Visualization To 
Improve Pain Communication Between 
Providers, Interpreters, and Patients 
with Limited English Proﬁciency 
 
NCT04975789 
 
 
 
 
 
 
 
Initial IRB Approval: 9/18/2020 
Document Date: 11/22/2023 

Information Visualization To Improve Pain Communication Between Providers, 
Interpreters, and Patients with Limited English Proﬁciency 
 
Principal Investigator: Maichou Lor, PhD, RN 
Funding: National Institute of Nursing Research (NINR) 
 
Purpose: The overall goal of the proposed study is to modify and pilot test the pain 
assessment InfoViz tool among limited English proﬁciency (LEP) Hmong patients in a 
primary care setting. 
 
Speciﬁc Aims: 
• To pilot the pain assessment InfoViz tool among LEP Hmong patients in primary 
care. 
o a. To examine the feasibility of implementing the InfoViz tool. 
o b. To explore congruency of patient–interpreter–provider MU of pain severity, 
location, and quality. 
o c. To evaluate outcome measures selected to capture satisfaction with 
communication, quality of communication, pain relief, and pain interference 
and explore variables identiﬁed in the InfoViz tool conceptual framework (MU 
of pain information, satisfaction with communication, pain diagnosis, and 
treatment). 
 
 
 
 

Background: 
Approximately 25 million individuals in the U.S. have limited English proﬁciency (LEP), 
deﬁned as the inability to read, write, and speak English.8 Communication differences 
between LEP patients, interpreters, and providers contribute to signiﬁcant health 
disparities. To achieve mutual understanding (MU) of diagnoses and treatments, LEP 
patients and providers must each effectively communicate their perceptions of the 
patient’s illness. Interpreters can assist in overcoming language and culture barriers 
between providers and LEP patients. Yet, an interpreter’s ability to accomplish such tasks 
may be hindered by nuances in the patient’s language and culture, including familiarity with 
medical terminology. One clear example of communication challenges negatively affecting 
patient outcomes is in pain management disparities among LEP patients. Pain is the most 
commonly reported symptom in primary care. However, pain in LEP patients is more likely 
to be underdiagnosed or undertreated than in English-speaking patients due to a lack of 
MU in patient–interpreter–provider communication and the culturally and linguistically 
appropriate pain tools that facilitate this communication. Ineffective pain communication 
results in inadequate pain relief, decreased satisfaction with care, and a poor quality of life. 
 
Information visualization (InfoViz) tools (i.e., visual representations of information) offer a 
potential solution to pain-communication challenges. These tools help patients and 
providers understand, communicate, and decide on treatment. Currently, visual pain 
scales with faces, thermometers, or colors rely on the assumption that all patients 
perceive the visuals as (1) having the same meanings and expressions and (2) being 
culturally appropriate. We know that outcomes are more successful when vulnerable 
groups participate in creating and testing communication interventions and tools. No 
studies have yet developed or tested culturally and linguistically appropriate InfoViz tools 
with the triad of LEP patients, interpreters, and providers to facilitate pain communication 
and the MU of pain information. 
 
My research focuses on pain communication in LEP Hmong (a Southeast Asian 

population). The Hmong can beneﬁt substantially from an appropriate InfoViz 
communication tool; 90% of older Hmong have LEP. Pain is particularly problematic for this 
group because the Hmong describe pain using visual metaphors often inconsistent with 
providers’ knowledge, and interpreters struggle to translate metaphors accurately between 
patients and providers. Moreover, the Hmong language lacks discrete descriptors for pain 
severity, location, and quality – the three components of a comprehensive pain 
assessment, which provide critical information necessary for diagnosis and management. 
This study will modify and conduct a pilot test of a pain InfoViz tool to facilitate the patient–
interpreter–provider communication of pain severity, location, and quality and increase MU 
during pain assessment. This study will be the ﬁrst step to improving pain diagnosis and 
management in LEP Hmong. 
 
Inclusion Criteria: 
Data will be collected from Hmong patients 18 years or older with self-reported pain at the 
time of recruitment. The LEP Hmong patients will be included if they indicate that they do 
not speak English well in response to the screening question, “how well do you speak 
English?” This question is a standard measure used by the U.S. Census in the American 
Community Survey and a proxy for LEP. English-proﬁcient Hmong patients will be included 
if they are bilingual. 
 
Interpreters are eligible if they are 13 years old or greater and self-identify as interpreting for 
a Hmong individual in the health care setting. Consistent with the Affordable Care Act, 
Section 1557, children of any age can act as medical interpreters for their family members 
as long as the adult patients consent. We will include children who are 13 years old and 
older because their cognitive and language skills are complete at this age. Because 
patients rely on both family (lay) and professional interpreters, both types of interpreters 
will be included in the study. The inclusion criteria are: self-identiﬁed as a professional 
interpreter or someone who interprets for family member in a healthcare setting. 

 
Data will also be collected from health care providers, including primary care nurse 
practitioners, medical or osteopathic physicians, or physician assistants who have at least 
one LEP Hmong patient who has visited the clinic with pain during the study period. 
 
Exclusion Criteria: 
Telephone interpreters will be excluded due to being removed from the clinical setting and 
thus unable to view and use the pain assessment InfoViz tool with patients. 
 
Recruitment Plan: 
To pilot the pain assessment InfoViz tool among LEP Hmong patients in primary care. The 
LEP Hmong patients, interpreters, and providers will be recruited differently. To recruit LEP 
Hmong patients, we will work with the Clinical Research Data Service (CRDS) at the UW–
Madison Institute for Clinical and Translational Research to obtain a daily report containing 
the contact information of any Hmong patients who identify as LEP and have upcoming 
appointments at the UW Family Medicine clinics. We will conduct telephone screening to 
recruit eligible participants and discuss the study’s purpose. If an LEP Hmong patient 
agrees to participate in the study, we will obtain oral consent. 
 
To recruit providers, we will attend a monthly staff meeting to inform providers about the 
study, invite their participation, and discuss the study’s procedures. After the meeting, we 
will also give providers a chance to decide whether they want to become involved in the 
study by sending them a follow-up “opt-out” email. Providers who do not “opt-out” by email 
within a two-week timeframe will be contacted by the research team to conﬁrm their 
willingness to participate, obtain written consent, and discuss the study’s procedures. To 
recruit interpreters, we will use two different strategies for each interpreter type (i.e., family 
versus professional interpreters). 
 

To recruit family interpreters, after we speak with LEP Hmong patients who are willing to 
participate in the study, we will ask the LEP Hmong patient to provide the name and 
contact information of their family interpreter. We will then call the family interpreter to 
discuss the study’s purpose and procedures, determine their willingness to participate in 
the study, and obtain consent. This approach was deemed to be appropriate and 
successful in previous research. After the completion of the study, we will send an email 
invite the interpreters to participate in a debrieﬁng interview to better understand their 
experience and how we can better implement the tool in future studies. 
 
To recruit a professional interpreter, we will work with the UW Health interpreter services to 
identify and recruit professional interpreters, and we will send a recruitment ﬂyer through 
email to all Hmong interpreters and ask them to contact interpreter services if they will 
participate. Interpreter services will then prioritize interpreters willing to participate in the 
study with consenting patients (see letter of support). 
 
Study Procedures and Interventions: 
We will follow IRB guidelines on how to obtain consent remotely. 
 
To pilot the pain assessment InfoViz tool among LEP Hmong patients in primary care. 
The goal is to obtain information about the feasibility of the study protocol and identify 
modiﬁcations (e.g., study procedures, outcome variables) needed for the design of a larger 
efficacy study, consistent with the goals of a pilot study. Data will be collected from LEP 
Hmong patients, interpreters, and providers. We will use the same inclusion criteria for LEP 
Hmong patients, interpreters, and providers as previously stated. Based on a preliminary 
survey of patient populations served at the UW Northeast Clinic, we identiﬁed 482 LEP 
Hmong patients who had been seen within the past 5 years. The total number of subjects 
will be 50 triads of patients, interpreters, and providers. We have selected a sample size of 
N = 50 triads, which is described in the literature as sufficient for pilot evaluations. 

The following are the surveys and interviews we will use. 
1) The MUS will be used to assess MU between the patient, interpreter, and provider about 
pain location and quality. Speciﬁcally, we will use the main symptom item of the MUS 
subscale. The MUS is validated by a multiethnic and multidisciplinary expert panel using a 
nominal group technique. Because the MUS was developed to assess communication in 
general, we will adapt it to assess pain communication speciﬁcally. Also, the MUS was not 
developed for interpreters, so we will adapt it to include all members of the triad. We will 
consult with Dr. Schaeffer, a survey expert, on all the adaptations of existing measures. 
2) Pain relief will be measured using a 5-point Verbal Rating Scale (i.e., none, slight, 
moderate, lots, complete) to rate pain reduction since the clinic visit. Self-reporting is 
appropriate as pain is a subjective experience. The Verbal Rating Scale is a gold standard 
for reporting pain and is documented as preferred by less-educated individuals. 
3) Pain interference will be measured using a one-item question derived from the 12-Item 
Short-Form Health Survey (SF-12): “During the past 4 weeks, how much did pain interfere 
with your normal work including both work outside the home and housework?” This will 
have ﬁve Likert response categories: “not at all,” “a little bit,” “moderately,” “quite a bit,” or 
“extremely.” We translated and tested this item in Hmong in our previous research. 
4) Satisfaction with communication will be measured using one item--"Overall, how 
satisﬁed are you with your doctor’s communication with you about pain?" with response 
categories of very satisﬁed, satisﬁed, neither satisﬁed nor dissatisﬁed, dissatisﬁed, or very 
dissatisﬁed. 
5) Quality of communication will be measured using one item--"Overall, how would you 
rate this doctor’s communication about pain with you? " with response items of excellent, 
very good, good, fair, or poor. This question was modeled after the Quality of 
Communication Questionnaire (Engelberg, Downey, & Curtis, 2006) 
6) Debrieﬁng interviews will assess additional information not captured by the outcome 
measures including exploring the ability of the outcome measures to capture participant 

experiences (conceptualization mechanism) related to MU, satisfaction with 
communication, pain diagnosis and treatments, and pain relief and interference. As part of 
the pilot test, we will also conduct a debrieﬁng interview with the interpreters to better 
understand their experience and how we can better implement the tool in future studies. 
The time it takes to complete the survey and interviews will vary from 10 to 30 minutes for 
patients, interpreters, and providers. All survey and interview completion will be conducted 
in a private area. 
Face-to-face research activities will be conducted according to institutional policy at the 
time in-person visits begin. 
 
Research Procedures: 
To pilot the pain assessment InfoViz tool among LEP Hmong patients in primary care, the 
following are our study procedures. The LEP Hmong patients, interpreters, and providers 
will be recruited differently. To recruit LEP Hmong patients, we will work with the Clinical 
Research Data Service (CRDS) at the UW–Madison Institute for Clinical and Translational 
Research to obtain a weekly report containing the contact information of any Hmong 
patients who identify as LEP and have upcoming appointments at the UW Family Medicine 
clinics. We will conduct telephone screening to recruit eligible participants and discuss the 
study’s purpose. If an LEP Hmong patient agrees to participate in the study, we will obtain 
oral consent via phone. We will audio record the telephone screening process. 
1. Prior to the visit, we will email the provider to notify him/ her about the upcoming 
appointment that our study team will observe. We will also email or text the interpreter 
based on his/her preference of communication. 
2. Arrival at Clinic. Upon a patient and interpreter’s arrival at the clinic, the receptionist at 
the front desk will direct them to the study team prior to the medical consultation with their 
health care providers. For the usual care phase, the patient and interpreter will continue as 
normal in the waiting room. For the intervention phase, we will ask the interpreter and 

patient to complete the pain assessment InfoViz tool together in the waiting area, a 
common practice in primary care. Acknowledging potential privacy issues related to this 
approach, we will encourage participants to sit in areas with fewer people. The RA will 
observe patient-interpreter-provider interactions in both usual and intervention conditions. 
3. During Clinic Visit. For the “usual care” phase, interpreters will continue to interpret as 
they normally would, with verbal interpretation for patients and providers. For the 
“intervention” phase, the interpreter will use the pain assessment InfoViz tool with verbal 
descriptions of pain information. Speciﬁcally, during pain assessments, the health care 
providers will ask questions related to pain, including pain severity, location, and quality. 
When the providers ask such questions, the interpreter will use the pain assessment 
InfoViz tool to facilitate the communication of the Hmong patients’ pain location and 
quality responses. For example, when the provider asks the patient, “Tell me where your 
pain is located,” the interpreter will interpret the patient’s response with verbal descriptions 
and show the patient’s marked pain location to providers during communication between 
patients and providers. When the provider asks the patient, “How would you describe your 
pain?” and if the patient says “It hurts like a chicken pecking” in the Hmong language, the 
interpreter will look at the tool to identify the corresponding meaning represented in the 
English medical terminology and translate the patient’s pain description using this 
terminology to the provider. When the provider asks the patient “How would you rate your 
pain?”, if the patient points to the very pale face on the far right, the interpreter will state 
“10.” The RA will repeat the ﬁdelity checklist to assess the interpreters’ use of the pain 
assessment InfoViz tool. We will audio record the conversation of the patient, interpreter, 
and providers during the clinical visit for both the usual care and intervention phases. 
4. Post-Visit. Immediately after the clinic visit, all the participants (usual care and 
intervention conditions) will complete the mutual understanding scale (MUS), and answer 
questions about communication quality, communication satisfaction, and the 
demographic survey. Patients in both the usual care and intervention conditions will also 
orally report their pain interference to the RA. Patients and interpreters will complete the 
acculturation scale. Interpreters and providers will complete all the surveys in writing. All 

the participants will also answer three open-ended debrieﬁng questions to further 
understand the impact of the tool on their MU, satisfaction, and acceptability of the tool. 
Providers will also be asked to answer two additional questions about their ability to make 
a pain diagnosis and prescribe appropriate pain treatment in the survey. Patients will 
complete the surveys orally with the RA and will be audio-recorded. The RA will collect the 
surveys and complete patient pain assessment InfoViz tools in person at the clinic. Within 
4 weeks of the clinic visit (the recommended follow-up period for pain by clinic providers), 
the RA will contact patients by telephone to orally rate their pain relief, pain interference, 
and share whether they used the recommended pain treatments (adherence to 
medication). This conversation will be audio-recorded. After each data collection point, the 
RA will document the challenges related to attending clinic appointments (i.e., schedule 
changes, participants changing their minds about study staff observing the patient-
provider interaction). The debrieﬁng interviews will provide insight into the mechanisms of 
intervention effects and ways to enhance the implementation of the intervention and 
select appropriate outcomes in planning for the larger trial. After the completion of the 
study, we will also conduct a debrieﬁng interview with the interpreters to better understand 
their experience and how we can better implement the tool in future studies. 
We will also review patients' records to determine if providers are documented patients' 
pain information more effectively in the absence and during the use of the pain InfoViz 
assessment tool. 
 
Outcome Measures: 
Type  
Name  
Time Frame 
Brief Description  
Primary 
Feasibility 
1. Recruitment and 
retention 
2. Completeness of 
InfoViz tool 
3. Fidelity of InfoViz 
tool use 
1. Throughout the 
study conduct 
2. Immediately post-
intervention 
3. Immediately post-
intervention 
1. Proportion of 
eligible 
participants 
enrolled; 
proportion of 
enrolled 
participants who 
complete the 
study 

2. Proportion of 
InfoViz tools with 
pain severity 
marked, at least 
one pain location 
marked, and at 
least one pain 
quality marked on 
the InfoViz tool. 
3. Proportion of 
items correctly 
performed on the 
investigator 
designed fidelity 
checklist. 
Primary  
Mutual Understanding 
Scale – Main 
Symptom Item  
Immediately post 
usual care / 
intervention  
One question item 
from the 6-item MUS 
asks patients about 
their main symptom 
(i.e., “What was the 
most important health 
compliant for which 
the physician was 
visited?”) and 
providers to report 
patients’ main 
symptom (e.g., “What 
was the most 
important health 
complaint for which 
the patient consulted 
with you?”).  
Secondary  
Visit-Specific 
Satisfaction 
Questionnaire (VSQ)- 
Satisfaction with 
communication item  
Immediately post 
usual 
care/intervention 
Four items of 
satisfaction of the 
VSQ subscale 
related to 
explanations of 
health management 
(i.e., “In terms of your 
satisfaction, how 
would you rate the 
explanation of what 
was done for you”, 
information about the 
outcome (i.e., “In 
terms of your 
satisfaction, how 
would you rate the 
information about the 
outcome [diagnosis, 
treatment options, 

activity participation]; 
interpersonal care 
(i.e., In terms of your 
satisfaction, how 
would you rate the 
personal manner 
[courtesy, respect, 
sensitivity, 
friendliness] of the 
provider), and 
general satisfaction 
(In terms of 
satisfaction, how 
would you rate the 
visit overall?).  
 
Secondary  
Pain relief  
Four weeks post 
usual care / 
intervention 
Patients will be asked 
to rate the amount of 
their pain relief 
experienced since 
the clinic visit using a 
5-point Verbal Rating 
Scale: none, slight, 
moderate, lots, 
complete.  
Secondary  
Pain interference  
Immediately and 4 
weeks post usual 
care/intervention 
One question item 
derived from the 12-
Item Short-Form 
Health Survey: 
“During the past 4 
weeks, how much did 
pain interfere with 
your normal work 
including both work 
outside the home and 
housework?” with 
response options: 
“not at all,” “a little 
bit,” “moderately,” 
“quite a bit,” or 
“extremely.”   
 
Data Protection Plan: 
To address the risk of loss of conﬁdentiality and privacy, there will be no identiﬁers in the 
transcripts, surveys, and datasheets. Speciﬁcally, each study participant will receive a 
code number to which all study data will be linked. The code will be known only by the PI 

and study team members. All study data will be reported in a tabular/group format, and no 
individual data including protected health information (PHI) will be released in presentation 
or publication. Only aggregate statistical output representing groups of subjects will be 
released. Records will be made available only to research staff and the Federal, State, and 
Institutional regulatory personnel who may review records as part of routine audits. The 
design sessions, surveys, and debrieﬁng interviews will be conducted in a private space. 
Hmong patients and interpreters will be reminded to not share private information 
disclosed during the design sessions to anyone. All data – including the audio recordings, 
scanned hand-written notes, and surveys– will be stored in a password-protected 
computer server at UW–Madison SON. The levels of security for the SON Server are 
threefold and include: 1) Physical Security: the server is located in a secure server room of 
the SON building that contains emergency backup power, an uninterruptible power supply, 
and an automated ﬁre suppression system; the server rack has locks on the cabinet doors; 
2) Firewall: located behind the UW–Madison campus ﬁrewall; 3) virtual server security, 
including a) the conﬁguration of permissions at the folder level can be done only by the 
“administrator,” and b) password protection is used at the network levels for all 
transactions that allow entry and editing of data, provide access to subject data, or 
administrative privileges. Once the audio recordings have been loaded onto the server, they 
will be deleted from the audiotape recorder. The audio recordings and transcripts will be 
maintained for 7 years and then destroyed, consistent with the requirements at the UW–
Madison. Paper-copy documents, such as the transcripts including the COVID-19 
qualitative item will be secured in a locked ﬁle cabinet in a locked storage room within the 
PI office space. We will collect some information about the impact of COVID-19 on patients 
as this has turned out to be an important issue for Hmong patients. This data will be 
collected for future study. We will follow the data protection stated above. 
We will restrict access to identiﬁable data to key personnel who need to know it. We are 
collecting only the data necessary to address our study aims. The identiﬁers we will obtain 
in the dataset are the medical record number (MRN) and the date of service. However, we 
do not plan to use such data in our analysis. Speciﬁcally, we will create a sub-set dataset 

without the MRN and the date of service in the analysis. Medical chart extraction will be 
done on the PI's office or research space in the School of Nursing using password-
protected computers. We will store and use data in a manner that substantially reduces 
the risk of loss of conﬁdentiality. Speciﬁcally, we will create a pseudo-ID, a unique three-
digit number that allows us to differentiate one individual record. When printed documents 
are required, such as recording of data from medical record abstractions, the paper copies 
will be secured in a locked ﬁle cabinet within a locked storage room within the PI office at 
the School of Nursing. Access to the paper records will be restricted to the PI and project 
personnel. All study data will be maintained in password-protected ﬁles on secure servers 
or in locked cabinets within locked storage rooms. Access to computer-stored information 
will be strictly controlled. Access to data is restricted to the PI and her designees, the 
project personnel directly involved in variable and dataset creation. The dataset is stored 
on a secure SON Data server. 
For the audio recordings during the clinic visit, the study team will scrub all PHI identiﬁers 
(e.g., age, name) before transcribing or analyzing the data. 
 
Plan to Protect PHI: 
All study data will be maintained in password-protected ﬁles on secure servers or in locked 
cabinets within locked storage rooms. Access to computer-stored information will be 
strictly controlled and stored on the School of Nursing's secure server. It has multiple 
layers of security and follows best practices for securing PHI data. 
After the data has been organized and variables created, we will create a limited dataset 
(direct identiﬁers removed, i.e., the date of service) that we will use day-to-day for analysis. 
The dataset will be stored on a secure School of Nursing Data server. When printed 
documents are required that include PHI or non-PHI with identiﬁers, the paper copies will 
be secured in a locked ﬁle cabinet within a locked storage room within the PI's research 
space. Access to the paper records will be restricted to the PI and project personnel. 

Identiﬁers: The direct identiﬁers we will obtain in the dataset are the medical record 
number (MRN) and the date of service. However, we do not plan to use such data in our 
analysis. Speciﬁcally, we will create a sub-set dataset without the MRN and the date of 
service in the analysis. Therefore, we will not maintain a link to such data. Access will be 
limited to investigators, data programmers, and the statistician who perform data linkage 
and subsequently remove direct identiﬁers, creating the analysis datasets. To further 
explain our data identiﬁcation system: Shortly after patient data is obtained from the UW 
Health back-end database, we will assign a pseudo-ID to each patient record. The pseudo-
ID is a unique random number that allows us to differentiate one individual record from 
another in the dataset. Next, the programmers remove all direct identiﬁers (name, MR 
number). In addition, the programmers remove UW Health's back-end database ID number 
which is a direct identiﬁer but is only useful in the UW Health backend database (and does 
not appear in Health Link). No sensitive information will be included in the analysis 
dataset. No individual PHI will be released in presentation or publication. Only aggregated 
statistical output representing groups of subjects will be released. 
For the audio recordings of the conversations during the in-person clinic visits, we will 
delete all PHI information using a program called Audacity prior to transcribing or listening 
to the conversation.