collaborate.health.bu.edu

collaborate.health.bu.edu

Rheumatic Heart Disease (RHD) Remote-Entry Data capture (RED) Registry Baylor-Malawi Childrens Center Novus Health Consulting Group Yara Altaher, Maria Campos, Araz Chiloyan, Haley Friedler, Jack Zhu RHD Disproportionately Affects Youth in Low Resource Settings High Prevalence of RHD in Malawi Leads to Cardiac Morbidity and Mortality RHD is Tied to Socio-economic Inequalities on a Global Scale World health Organization's Global Resolution on Rheumatic Fever and Rheumatic Heart Disease call for: Strengthen data collection and knowledge of RHD 4 prevalence in endemic

countries. Recommends using cost effective medicines and technologies for the prevention and control of RHD, which includes appropriate monitoring and treatment of strep and RHD. 3 Telehealth outreach methods are critical to reach and track those with RHD: Brazil 2016 Study: screened children in their communities using portable tools. Found higher prevalence rates than previous studies. 4 Australia: RHD prevalent in children from indigenous communities.5 Use of Tracking Apps to monitor RHD occurrences and vaccinations. Treatment Tracker App : https://www.rhdaustralia.org.au/treatment-trackerapp

Malawis Population Primarily Lives in Rural Areas With Limited Data Access 8.6 million mobile connections6 Mobile Band Penetration Mobile Phone Penetration Rural Population A Mobile Solution To Improve RHD Surveillance Design Challenge: How can local health workers in Malawi keep an accurate, up-to-date record of youth who have RHD and connect them with the appropriate resources to ensure that they do not develop further strep throat or more severe chronic disease? Goal: Our goal is to improve the surveillance of rheumatic heart disease cases among youth in rural and

urban Malawi while also ensuring that registered youth are receiving monthly injections of benzathine penicillin G (BPG) to prevent further strep throat and more severe rheumatic heart disease. Local health workers refer patients with RHD symptoms to Central Hospital to be diagnosed. Kamuzu Central Hospital workers enter data relevant to diagnosed patient (name, date of next injection, etc.). Local health workers have access to data from Central Hospital to determine if patient

is overdue for injection. Health workers reach out to patients in need of another injection. Patients get additional vials from Central Hospital if needed. Patient data is updated and the next injection date is calculated. Data Will Be Collected in 2 Central Hospitals & 8 Local Health Centers in Malawi Process Map Visualizing Registration and

Treatment of RHD Surveillance of RHD Patient Data Via Dashboard Metric 1: Percent of patients late for last BPG injection (fuel gauge:0-100%) Numerator: # patients >= 1 day late for last BPG injection Denominator: Total # patients registered in app Metric 2: Metric 1 stratified by clinic location (stacked bar chart: 0-100%; red for % late, green for % on time) Metric 3: Median percentage of days covered (fuel gauge: 0-100%; >= 80% goal) Summary of patient-level BPG adherence data Range and standard deviation Metric 4: Percent of RHD patients registered on the app (fuel gauge: 0-100%) Numerator: number of cases on app Denominator: estimated number of RHD patients in population served

Monitoring and Evaluating Key Components Should Result in Successful Implementation Usabilit y Satisfaction assessment from local health workers (front-end user) Frequency of use with patient Satisfaction assessment from Dr. Sanyahumbi (back-end user) Frequency of data reporting Data Quality Completeness of data collected over time Data error rate over time Usefulness of data over time Cost

Time to implement at the clinic Time of training Cost analysis: Cost savings from prevented hospitalizations over time compared to costs of program CommCare is an Ideal Platform for the RHD RED Application Runs as a mobilebased app on 2 types of devices: android smartphones & basic feature phones. Useful for data collection, decision support, job aid, counseling tool & better supervision.

Tracks & supports clients, facilities, transactions, or anything else that needs to be followed over time. 2 Components CommCare CommCare HQ: website Mobile: used for app mobile-based management & used for data reporting. collection & Users design service app, access

delivery (used data, and on phone or manage mobile tablet). workers. WHO Recommends a Registry to Track RHD Patients The RHD RED application will contain a total of 6 forms RHD RED Functions to Register and Follow Patients Registration Register RHD patients. RHD Follow-Up Completed every three months by Dr.

Sanyahumbi at the Kamuzu Central Hospital. Questions for Cardiologist Completed by local health workers when they have questions for Dr. Sanyahumbi. Includes FAQ. BPG Follow-Up Completed by central hospital or at local health centers when patient receives BPG injection.

Adverse Event Form Completed when an adverse event, transfer of care, or death has occurred. Annual Visit/Echo Completed during annual check-in. Annual echocardiograms are required. 13 The Location(s) & User(s) of the RHD RED App Depends on the Form Type User Guide: Registration Form Objective: Registration form filled out by pediatric cardiologist, Dr. Amy Sanyahumbi, at the central hospital to input new patients into RHD Registry.

Step 1 To begin, click on Registratio n form Step 2 Register patient by inputting first & last name Step 3 Follow prompt & complete questions in form User Guide: RHD Follow-Up Form Objective: RHD Follow-Up form is filled out by pediatric cardiologist, Dr. Amy Sanyahumbi, at the central hospital to check-up on RHD patient during 3-month visit if patient is stable or earlier than 3 months if patient

is unstable. Step 1 To begin, click on RHD Follow Up form Step 2 Select patient from case list Step 3 Follow prompt & complete questions in form User Guide: BPG Follow-Up Form

Objective: The BPG form is completed by either central hospital staff or the local health workers. This form monitors bpg injections and alerts the health worker if the patient is late for their BPG injection. Step 1 Go to Case List & Select BPG Follow Up form Step 2 Select patient name Step 3 Follow prompt & complete questions in

form User Guide: Adverse Events Form Objective: The Adverse Event Form is completed by local health workers if a death, transfer of care, or other events with patient has occurred. Step 1 Go to case list & select Adverse Event form Step 2 Select patient name Step 3 Follow prompt

& complete Adverse Event form questions User Guide: Question Form Objective: The Question for Cardiologist form is completed by the local health workers. This form connects the pediatric cardiologist, Dr. Amy Sanyahumbi and the local health worker to communicate any questions or concerns. Step 1 Go to case list & select Adverse Event form Step 2 Select patient name Step 3

Follow prompt & complete Adverse Event form questions Annual Follow-Up Form Objective: Annual follow-up form filled out by pediatric cardiologist, Dr. Amy Sanyahumbi, at the central hospital to input new patients into RHD Registry and continue to monitor patient during annual visit throughout patients lifetime. Used to keep track of patients echocardiogram info. Step 1 Go to case list & select Annual Visit/ Echo form Step 2 Select patient name

Step 3 Press continue & answer questions accordingly A Video Guide to Using the RHD RED Application Scale-Up & Sustaining the RHD RED App in Malawi CommCare Pricing Options for Scale-Up Basic features Standar Guaranteedd email support

No SMS Lookup tables 10 Mobile Users Case importer Free within 3 business days API access One-way SMS 125 Mobile Users $0/month $300/month

Pro All Standard features Guaranteed email support within one business day 0 Advance All Prod features Phone support Custom branding Web-based applications HIPAA compliance assurance Data management tools Two-way SMS

External app integration framework 250 Mobile Users 500 Mobile Users $600/month $1,200/month Novus Health Consulting Team Application Name: RHD RED App Project Space: https://www.commcarehq.org/a/rhd-red/dashboard/project/ Yara Altaher [email protected] Araz Chiloyan Jack Zhu

[email protected] [email protected] Maria Campos Haley Friedler [email protected] [email protected] References 1. 2. 3. 4. 5. 6. 7.

Admin. RHD Action Small Grant Update: Malawi. http://rhdaction.org/news/rhd-action-small-grant-update-malawi. Published April 23, 2018. Accessed April 30, 2019. RHD Resolution_Background Info_RHD Resolution Campaign Pack.pdf. http://rhdaction.org/sites/default/files/RHD %20Resolution_Background%20Info_RHD%20Resolution%20Campaign%20Pack.pdf. Accessed April 30, 2019. World Heart Federation. (2018, May 25). BREAKING NEWS: Governments Adopt a Global Resolution on Rheumatic Fever and Rheumatic Heart Disease at the World Health Assembly. Retrieved April 9, 2019, from https://www.world-heart-federation.org/news/breaking-news-governments-adopt-global-resolution-rheumatic-fever-rheumat ic-heart-disease-world-health-assembly Nascimento, B. R., Sable, C., Nunes, M. C., Diamantino, A. C., Oliveira, K. K., Oliveira, C. M., . . . Vitria M. L. R. De Rezende. (2018). Comparison Between Different Strategies of Rheumatic Heart Disease Echocardiographic Screening in Brazil: Data From the PROVAR (Rheumatic Valve Disease Screening Program) Study. Journal of the American Heart Association, 7(4). doi:10.1161/jaha.117.008039 Parnaby, M. G., & Carapetis, J. R. (2010). Rheumatic fever in Indigenous Australian children. Journal of Paediatrics and Child Health, 46(9), 527-533. doi:10.1111/j.1440-1754.2010.01841.x 2017 GSMA Mobile Connectivity Index. 2017 GSMA Mobile Connectivity Index. https://www.mobileconnectivityindex.com/. Accessed May 6, 2019. Beyond Our Borders: Global Health in Pediatric Heart Disease From Africa to Latin America - American College of Cardiology. https://www.acc.org/latest-in-cardiology/articles/2017/08/21/11/08/beyond-our-borders. Accessed May 6, 2019.

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