Addressing Disparities in Lupus Care Through an Integrated Care Management Program (Rheum-iCMP)
Phase: NA
Conditions: Systemic Lupus Erythematosus
Sponsor: Brigham and Women's Hospital

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Addressing Disparities in Lupus Care Through an Integrated Care 
Management Program (Rheum-ICMP) 
 
NCT03915652 
 
June 27th, 2023 
 
 

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Background and Significance 
Systemic lupus erythematosus (SLE) is a chronic multi-system autoimmune disease with 
significant morbidity and mortality that disproportionately affects women of child-bearing age 
and non-white racial/ethnic groups.1,2 The prevalence of SLE is more than twice as high in 
African American individuals compared to White individuals and is the sixth leading cause of 
death for African American and Hispanic women aged 25-34 years old.1-3 Using data from 
nationwide Medicaid, the public insurance for low income individuals, our team has shown that 
African American SLE patients suffer from significantly higher rates of acute care utilization 
(emergency department (ED) visits, hospitalizations), as well as end-stage renal disease (ESRD), 
serious infections, cardiovascular disease, and mortality than White SLE patients.2,4-7 We have 
also demonstrated that Medicaid beneficiaries consistently fail to meet established metrics for 
high-quality ambulatory SLE care resulting in a disproportionate burden of avoidable adverse 
outcomes.8-10 In addition, in this vulnerable population, more than 75% of SLE patients are 
nonadherent to their medications and this is associated with increased avoidable acute care 
use.5,11-13 Within our Boston community, we conducted focus groups with predominately African 
American SLE patients from federally designated medically underserved areas (Dorchester, 
Mattapan and Roxbury), and uncovered significant need for improved access to coordinated care 
among patients receiving care at academic medical centers.14 At the BWH Arthritis Center, 
among 107 patients surveyed, only 23% completely adhered to their medications, 86% described 
at least one barrier to consistent medication use or rheumatology care, and depressive symptoms 
were common.15,16 We recently found that among 110 SLE patients receiving care at BWH, 
>50% experienced discrimination of some kind that they ascribed to their race, gender or age. In 
addition, between July 2015-March 2017, despite the need for close monitoring of disease 
activity and medication use, only 60% of BWH SLE patients kept their rheumatology 
appointments as scheduled. 
To begin to reduce the racial/ethnic and socioeconomic status disparities in SLE care and 
outcomes, there is an urgent need to identify patients at the BWH Arthritis Center at increased 
risk for avoidable acute care use and adverse outcomes and to address barriers to high-quality, 
consistent ambulatory care for SLE. No similar program has been tailored to the needs of 
vulnerable rheumatology patients. Our goal is to adapt the existing, sustainable Partners 

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Healthcare integrated care management program (iCMP) infrastructure to meet the needs of 
vulnerable SLE patients and ultimately, to scale this intervention to reduce disparities among all 
high-risk patients with rheumatic diseases. The iCMP program utilizes nurses, social workers 
and community health workers to coordinate care for high-risk, high-cost primary care patients. 
This program has reduced acute care use and has been successfully adapted to support complex 
chronic disease management for complex diseases including heart failure and end-stage renal 
disease.  
Our team has demonstrated significant racial, ethnic, and socioeconomic disparities in 
receipt of high-quality SLE care, in medication adherence, and in adverse outcomes nationally, 
in Boston, and at our BWH Arthritis Center. To reduce disparities, high-risk patients must be 
identified, barriers unique to each patient must be understood, and sustainable, coordinated, high-
quality care must be delivered. We piloted a 6-month intervention using patient navigators 
without prior medical training to understand and address barriers to medication adherence among 
>100 rheumatology patients at our center. In response to the needs encountered, navigators 
performed a range of tasks including facilitation of patient-MD communication, 
medication/diagnosis education, and development of individualized strategies to improve 
adherence.15 This prior intervention highlighted the clear need for additional chronic disease care 
support and coordination, however it was funded as part of a research study and was not part of 
the clinic’s long-term infrastructure and therefore the benefits could not be sustained. In addition, 
due to their lack of medical training, the navigators could not participate in complex chronic 
disease management. Partners iCMP is a well-established, sustainable, scalable primary care-
based program for high-need, high-cost patients that provides care coordination, builds trusting 
relationships, and addresses mental and physical health issues and social determinants.17, 18 Using 
a trained nurse at the center of care coordination, disease-specific iCMP models for congestive 
heart failure and ESRD have similarly proved to be feasible and effective. SLE patients are 
unique in that most are young, and many are healthy prior to and soon after diagnosis, meaning 
that they may be missed by standard Partners high-risk patient identification algorithms at the 
time when their disease course is most modifiable. In addition, they are disproportionately from 
vulnerable populations and many SLE-related adverse outcomes are avoidable if high-quality 
ambulatory care is received.19 Outside of our institution, a Chicago-based study showed that 
patients who received integrated lupus care rather than general rheumatology care had 

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significantly better lupus quality metric performance.20 A care model utilizing a nurse care 
coordinator and social worker at the University of Rochester has led to a decrease in no-show 
rates, hospitalizations, and 30-day readmissions for high-risk patients.21 BWH serves as the 
largest provider of lupus care in New England, and it is essential that we keep pace with other 
leading centers to establish the infrastructure needed to identify and care for our most vulnerable 
patients.  
The innovation of Rheum-iCMP originates from:  
• The ability to leverage the established effective infrastructure and expertise of the existing 
iCMP program, while additionally arming iCMP nurses with SLE-specific training with a 
focus on disparities 
• The identification of high-risk SLE patients accounting for unique characteristics that 
differentiate them from other chronic disease patients 
• The formal analysis of the ability of Rheum-iCMP to improve the receipt of high-quality 
ambulatory care and minimize avoidable acute care use 
• The sustainability of Rheum-iCMP beyond a year-long grant and the scalability to expand to 
vulnerable patients with other rheumatic diseases 
• The direct response to needs raised by our BWH patients and our greater Boston SLE 
community members to better coordinate their complex medical care  
 
Specific Aims 
Aim 1: To systematically identify and track SLE patients receiving care at BWH with SLE-
related avoidable conditions leading to substantial acute care utilization, as well as SLE patients 
with inconsistent ambulatory care use, placing them at significant risk for future avoidable acute 
care use and poor outcomes. 
 
Aim 2: To understand the social determinants that contribute to acute care use and avoidable 
outcomes among SLE patients using semi-structured interviews and a photovoice method.  
 
Aim 3: To deliver the “Rheum-iCMP” program to these high-risk SLE patients through a pilot 
program, to determine whether coordinated, comprehensive care and specific nurse training in 

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rheumatology improves high-quality, consistent ambulatory care use and ultimately reduces 
avoidable acute care use. 
 
Subject Selection  
 
We plan to identify English and Spanish-speaking high-risk SLE patients (age >18, with 
diagnosis of SLE, receiving primary care at BWH) who are in the Partners’ risk contract 
(Medicaid, Medicare and certain commercial insurances) with BWH primary care physicians 
(PCPs) from three sources. First, we will use the BWH Lupus Registry (IRB 2001P000300, PI: 
Costenbader), which is updated regularly and includes SLE patients actively receiving care at 
BWH. Second, we will identify SLE patients using via Partners EHR using our validated SLE 
algorithm (IRB 2016P001428, PI: Feldman) and look specifically at those receiving primary care 
within the BWH system. We will link both BWH Lupus Registry patients and patients meeting 
our algorithm to claims data through the Population Health Repository (IRB 2013P001479, PI: 
Vogeli, IRB 2017P000339, PI: Feldman, and IRB 2018P003040, PI: Feldman). We will then 
identify patients with increased healthcare utilization, including emergency department visits 
and/or hospitalizations during the preceding 3 years, and who are at risk for avoidable outcomes 
(rheumatology appointment no-shows/same-day cancellations within the same period). We will 
also apply the Partners’ Center for Population Health high-risk algorithm to both cohorts to 
identify additional high-risk patients. We will then reach out to the identified patients’ primary 
care providers or their rheumatologist for their approval to send them a letter on their behalf 
inviting them to participate or asking them to introduce the study to their patients with a fact 
sheet. Third, we will ask rheumatologists to refer SLE patients who might benefit from Rheum-
iCMP since a similar referral system has been successful within BWH-wide iCMP. Our 
requirement for inclusion is that the patient has lupus and a BWH PCP. We will focus on patients 
with PCPs in the Jen and Fish Centers and may expand to the Faulkner and other BWH-affiliated 
primary care practices where BWH iCMP is active as well depending on recruitment numbers 
and iCMP nurse availability. If patients prefer correspondence to occur, once enrolled, via email, 
we will do this via Patient Gateway or send secure email. For patients already enrolled in iCMP, 
we will use the above strategies (lupus registry, algorithm application, rheumatologist-referral) to 
identify patients. In addition, we will apply a SLE-related ICD-9/10 code filter to the list of all 

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patients enrolled in the iCMP program at BWH and then conduct chart reviews and use data 
from RPDR in order to determine additional already enrolled patients who have SLE.  
 
Subject Enrollment  
Our total enrollment goal is 140. We plan to newly enroll 40 SLE patients prospectively using a 
stepped wedge design. Among these 40 patients, 20 patients to start Rheum-iCMP right away, 
and 20 patients to receive monthly educational materials by mail for 4 months and then start 
Rheum-iCMP. We will invite these patients to participate in a semi-structured interview that 
includes asking participants ahead of time to take photographs (with a disposable camera we will 
provide) of their neighborhoods and their homes, in order to begin a conversation about the 
social determinants that contribute to their care-seeking behaviors. We are requesting a waiver of 
documentation of informed consent. A fact sheet will be given to all potential participants and 
will be reviewed by a trained member of the study team who is not the patient’s direct physician 
and verbal consent will be obtained. We are requesting a waiver because this program is a 
modification of an existing program (iCMP) that is part of standard of care procedures at the 
BWH. With the stepped wedge design of this program, everyone who agrees to participate will 
receive the intervention (participation in rheum-iCMP). This program does not pose more than 
minimal risk and based on the Partners-wide experiences with iCMP, it has been proven to 
improve patient care and reduce avoidable acute care use. The goal of this rheumatology-specific 
iCMP program is to study an enhanced iCMP for lupus patients to ultimately scale it 
rheumatology-wide. By requiring written consent, we feel that we may unnecessarily exclude 
patients from receiving a program that would be beneficial for their health that is already 
standard of care at BWH. We plan to assess iCMP nurse and MD satisfaction with Rheum-iCMP 
using surveys at the end of 12-16 months, and we will supply information sheets with the 
surveys and infer nurse and physician consent by completion of the survey. 
Partners-wide, 190 SLE patients are actively enrolled in the iCMP program. We expect 
that 100 of these SLE patients are already enrolled in BWH iCMP. We plan to examine EHR and 
claims data for these patients pre and post additional rheum-specific iCMP nurse education. 
However, we do not plan to ask for survey completion, since this iCMP program is considered 
standard of care, and because we do not feel that this will involve more than minimal risk, we do 

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not plan to consent these individuals to allow us to examine their medical records. We will invite 
these patients to participate in the semi-structured interview. 
 
Study Procedures 
Selected iCMP nurses will receive a 4-hour training using unique educational materials 
already developed by our team (IRB 2017P001824, PI: Feldman) that specifically address SLE-
related racial, ethnic and socioeconomic disparities.22,23 We will compare SLE-related quality 
metrics, adherence to rheumatology appointments, and acute care use 12 months prior to rheum-
iCMP vs. during rheum-iCMP and then for the subsequent 12-24 months. We will provide SLE-
specific training to the iCMP nurses of the SLE patients who are already enrolled in BWH iCMP 
at BWH and compare measures extractable from medical records pre-iCMP, during iCMP but 
pre-SLE-specific iCMP nurse training, and during Rheum-iCMP (post-nurse training) for 
N=100. As described above in subject enrollment, we anticipate 100 patients already enrolled in 
iCMP with SLE (who we will not newly enroll or collect surveys from) and for these patients, 
we will conduct chart reviews for the 12-months prior to iCMP enrollment, during their 
enrollment and, if available for the subsequent 12-24 months after discharge from the standard-
of-care program. In addition to directly reviewing charts, we will also use RPDR and the 
Enterprise Data Warehouse (EDW) for data such as appointment no shows not available through 
RPDR for analyses in the pre-, during, and post- iCMP study periods. 
We plan to continue to collect data on appointment and medication adherence, SLE 
quality metrics and acute care utilization to measure impact. During the intervention period, our 
project coordinator will set up a sustainable EPIC system for tracking appointment no-shows and 
SLE quality metrics (e.g. lab monitoring, contraceptive use). We will collect the following 
surveys at baseline and 12 months after the start of rheum-iCMP: a lupus checklist of quality 
metrics, medication adherence and medication beliefs using the MASRI survey and the Beliefs 
about Medications scale, SLE disease activity using SLAQ, mental health using the MHI-5, 
social determinants of health using a survey already integrated into the Partners EHR system, the 
PROMIS global health scale short form, and racial discrimination using the Everyday 
Discrimination Scale. We will also collect baseline demographics information via a 
demographics survey. A physician member of the team will complete a lupus checklist for each 

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of the enrolled patients in EPIC and route the checklist to the iCMP nurse, rheumatologist and 
PCP as part of the standard of care baseline iCMP needs assessment. To complement the 
surveys, we will also conduct chart reviews with a focus on social determinant of health factors 
collected as part of standard of care by the iCMP nurses. We will conduct the chart reviews for  
the following time periods: 12 months prior to the rheum-iCMP study period, during the rheum-
iCMP study period, and 12-24 months following the end of the study period. For individuals who 
unenrolled before the end of the 12-month study period, we will stop the chart review at the date 
of unenrollment. We may decide to share the results of the previously mentioned surveys with 
the patient’s physician or iCMP nurse if doing so could improve the patient’s care. For 
individuals who have already completed one round of surveys and received the old information 
brochure, we will call them and document the date and time of the conversation asking 
permission to convey information from surveys that might help their care to their physicians 
and/or iCMP nurse. We will also determine acute care utilization (e.g. ED visits, 
hospitalizations) using partners risk contract claims data (IRB 2013P001479, PI: Vogeli, IRB 
2017P000339, PI: Feldman, and IRB 2018P003040, PI: Feldman). We will also use surveys at 
the end of 12-16 months to assess patient, iCMP nurse, MD satisfaction. Patients will have the 
choice of either completing the surveys on REDCap or in paper form at outpatient appointments 
or via mail. If the patient prefers to complete a survey using REDCap, we will email an 
individual link to the subject using Send Secure. For longer term quality metrics 12-24 months 
past the intervention period, we will work with the Center for Population Health’s team to set up 
a tracking system that has Partners-wide claims data linked with electronic medical records. For 
the 100 patients already enrolled in the iCMP intervention, we will collect data on process 
measures (e.g. appointment no- shows, subspecialty and primary care visits, acute care 
utilization, receipt of standard-of-care SLE monitoring laboratory tests, vaccinations, preventive 
care screenings and medications) and social determinants of health. We also plan to use natural 
language processing methods to extract social determinants of health data from unstructured 
fields (e.g. notes) in electronic medical records. We will compare the ability of these methods to 
extract the social determinants of health data with the gold standard chart reviews (e.g. 
sensitivity, specificity). We will also collect these data for the 40 patients. 
 
Photovoice Semi-Structured Interviews 

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We will invite the 40 newly enrolled patients as well as patients already actively enrolled in the 
iCMP program to participate in an optional semi-structured interview that we plan to record and 
transcribe regarding social determinants of health. Patients who decline to participate in this can 
still take part in rheum-iCMP. Participants will be given a disposable camera, or have the option 
to use their smartphone, and asked to take 10-15 photographs of their home and neighborhood. 
Once the photographs are received, a trained qualitative research moderator and the applicant 
will conduct ~60-90 minute semi-structured, in-depth photo-elicitation interviews. Photographs 
will be discussed first to empower and engage the participant and to provide context for the 
interview. Participants will be asked to 1) select the photographs for discussion, 2) contextualize 
each image and tell a story, 3) describe what is really happening and how it relates to their life 
and 4) propose suggestions for what can be done to improve any barriers described. Inherent to 
the Photovoice method is an “action” component. Participants will be explicitly asked how these 
photographs capture issues related to their health and healthcare use and what specific 
interventions could improve access to consistent care. The moderator will integrate questions 
that address social determinants (see Moderator guide) as they relate to potentially avoidable 
acute care use. For example, the interviewer will ask about neighborhood safety in the context of 
waiting for public transportation to keep appointments. If this is a barrier, the interviewer will 
ask for suggestions to improve this, such as expanded access to subsidized door-to-door transit 
for disabled individuals. 
Biostatistical Analysis 
We plan to continue to collect data on appointment adherence, SLE quality metrics and 
acute care utilization to measure impact. During the intervention period, our project coordinator 
will set up a sustainable EPIC system for tracking appointment no-shows and SLE quality 
metrics25 (e.g. lab monitoring, contraceptive use). We will assess medication adherence using the 
MASRI survey24, a lupus checklist with quality metrics, SLE disease activity using SLAQ26 and 
acute care utilization (e.g. ED visits, hospitalizations) using partners risk contract claims data. 
We will also use surveys to assess patient, iCMP nurse, MD satisfaction, as well as patient-
reported outcome measures (e.g. quality of life) 28. Surveys will be collected at outpatient 
appointments or by mail. For longer term quality metrics past the intervention period, we will 
work with the Center for Population Health’s team to set up a tracking system that has Partners-
wide claims data linked with electronic medical records. For the 100 patients already enrolled in 

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the iCMP intervention for whom we are doing data collection only (no direct patient 
interaction/intervention), we will collect data on process measures (e.g. appointment no-shows, 
subspecialty and primary care visits, acute care utilization, receipt of standard-of-care SLE 
monitoring laboratory tests, vaccinations, preventive care screenings and medications). We will 
also collect these data for the 40 patients. This is a pilot study. One of our primary measures is to 
reduce ambulatory and subspecialty care no-show rates for the highest risk patients. We estimate 
that the no-show rate is about 70% and we aim to reduce this to 20%. We would need a total of 
30 patients (15 in each arm) to have 80% power to detect this difference and there have been 
multiple unexpected withdrawals due to insurance and PCP related issues out of our study’s 
control, which is why we chose N=40 for our intervention. We will used paired t-tests and 
Wilcoxon rank tests depending on distribution to compare combined arm data post vs. pre study 
period for the primary outcomes. 
Photovoice Semi-Structured Interviews 
We will use visual analysis strategies to directly interpret the photographs. This includes 
close examination of every part of each image, an understanding of the timing and location of 
each photograph in the series, whether they include people/family members, whether images are 
posed or candid, and an assessment of the patterns and themes that emerge across the 
photographs. The elicitation interviews will be audio-recorded, transcribed verbatim, and entered 
into Dedoose for analysis. Dedoose is an affordable, cross-platform application designed to store, 
organize and code qualitative and mixed methods data, and can include both text and 
photographs. We will analyze interview data using a modified grounded theory approach to 
identify major themes relating to the targeted aim of understanding the social determinants that 
contribute to avoidable care use, and practical considerations for interventions. This modified 
approach allows us to accomplish this rather than purely identifying an overarching theory for 
the impact of social determinants on health. We will apply grounded theory principles including 
open, axial and selective coding, as well as memo writing, to identify concepts and categories, 
which we then will group into themes. We will organize our data in a set of tables to facilitate the 
constant comparison of themes across participants based on age, sex, race/ethnicity and 
education to increase the internal validity of results. 
  
Risk and Discomforts 

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There is a very small risk to participants of breach of confidentiality, for which we have 
several protections in place. All patient information will be stored with unique identifiers and not 
names. This information will be stored on a secure password-protected computer (database 
inside the PHS firewall) in a locked office. Only approved study staff will have access to the 
data. The PI and her collaborators/Co-Is will be available to all participants to provide support 
and answer questions that arise.  
 
Potential Benefits 
It is expected that study participants will experience a decrease in avoidable acute care 
use and improved access to sustained high-quality coordinated SLE care. Participants enrolled in 
rheum-iCMP remain in the program after the survey assessments are completed, since we are 
using existing infrastructure. Ultimately, we hope that this will lead to a societal benefit of 
improved access to coordinated SLE-care, social work, mental health and pharmacy services for 
vulnerable SLE patients and reduced disparities among high-risk SLE patients. Participants will 
also receive a $20 gift certificate for the return of any surveys and $30 additional for 
participation in the interview. Interview participants will have their parking paid for during the 
interview.  
 
Monitoring and Quality Assurance  
Data quality assurance protocols will be developed to ensure that a set of operational 
techniques and activities are in place. The database manager will examine data files for data 
entry errors and plausibility of extreme outliers using a series of statistical methods and will 
resolve any specific data discrepancies or inconsistencies.  Accuracy and completion of data 
sources will be reviewed on a regular basis. 
Unanticipated problems involving risks to subjects or other problems including adverse 
events will be reported to the PHRC in accordance with the PHRC unanticipated problems 
including adverse events reporting guidelines. 

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If any participant experiences what they perceive as an adverse event related to the 
information provided, the PI will report this to the IRB immediately. 
Per our correspondence with RISO, we will do the following to protect the security of our 
data:  
• 
Partners REDCap will be used  
• 
Should any emails be sent to participants, the blind copy function (BCC) must be used when 
sending to more than one patient/research subject, in order to protect the confidentiality of 
recipients 
• 
Inform participants to set up a PIN code/encrypt their smartphones as part of formal study 
procedures or Informed Consent  
• 
Participants will be provided with a disposable camera and send back to study team to develop 
the photos  
• 
Participants will take photos of their environment, and will be instructed not to focus on taking 
pictures that could contain anything that may be individually identifying (i.e. themselves, other 
people, license plates, etc.) 
o 
Photos will be reviewed with participants at their study visit 
o 
Photos will be scanned and saved on a Partners SFA that is only accessible by authorized 
study staff 
o 
Original hard copy photos will be disposed in a secure shredding bin following the 
interviews  
o 
Should photos contain any identifying information, they will be redacted by covering 
over with a black box before storing on Partners SFA  
§ 
Access to SFA should be reviewed (and revoked) as study staff changes   
• 
Participants may also use their smartphone cameras to take pictures and send back to the study 
team via "send secure" 
o 
Inform participants to delete pictures pertaining to research study from their phones upon 
sending and obtaining confirmation that photos have been received 
• 
Participants will be provided with a 'tip' sheet that will provide instructions for picture taking and 
expectations of the interview sessions for acknowledgement  
• 
Audio recordings and subject code key will be saved on Partners SFA  
• 
Dedoose will be used for qualitative data analysis and data visualization 
o 
Dedoose will never have access to PHI 
o 
Only deidentified transcripts from interviews will be uploaded for coding and analysis 
o 
Data is encrypted in transit 
• 
For the Deedoose web portal: 
o 
HTTPs is enforced over HTTP 
o 
TLS version in use is 1.2 or superior 
o 
Weak ciphers are disabled 
o 
Modern ciphers are configured as preferred 
o 
Server ciphers preferred over client’s  
o 
Certificates are valid and issued by a publicly-trusted certificate authority 
o 
The web portal will be accessed only from devices compliant to Partners workstation 
policies 
o 
Access should be reviewed (and revoked) when study staff changes 
• 
Access to web portal by study staff requires a username and password: 
o 
Passwords must be a minimum of 8 characters 
o 
Passwords must be alphanumeric, containing at least one of each. 
o 
Cannot reuse 4 previous passwords. 

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o 
Passwords must be changed immediately if either the password or the system is or may 
be compromised 
o 
Passwords must not be displayed in clear text when they are being input into an 
application. 
o 
Passwords must be changed every 90 days 
o 
Users must be uniquely identified; no shared or group accounts without security 
authorization 
o 
Passwords may not be shared 
o 
User access must be terminated immediately upon termination or change of 
responsibilities 
o 
Passwords should not be the same used as regular Partners credentials for workstations 
• 
Only Partners Workstations / Laptops in use for the research  
o 
Password requirements from above 
o 
Encryption at rest is in place 
o 
Up-to-date malware protection including antivirus, spyware detection and removal tools 
o 
Personal firewall is enabled 
o 
Manufacturer supported operating system with current updates, if available for the device 
o 
Crowdstrike End Point protection installed 
 
 
 

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