Summaries & Resources
All Data Use Community Meeting summaries and resources can be found below. If you have any questions please reach out to info@datausecommunity.org.
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| Date | Topic | Country | Meeting Overview | Summary - What was shared? | Resource Link |
|---|---|---|---|---|---|
| 21 November 2024 | Patient Identity Management | Uganda | Identity Management Collaborative Session: Uganda Experience | Uganda shared their experience using PIM, specifically on how they implement PIM, the challenges faced, lessons learned, and recommendations. | https://wiki.ohie.org/display/CP/2024-11-21+Patient+ID+Mgmt+Collaborative+Session |
| 30 October 2024 | Patient Identity Management | Côte d'Ivoire | Identity Management Collaborative Session: Côte d'Ivoire Experience | The Corte D’ Ivoire team shared their experiences of the implementation of PIM, including current processes, solutions, challenges, lessons learned, and future directions | https://wiki.ohie.org/display/CP/2024-10-30+Patient+ID+Mgmt+Collaborative+Session |
| 23 October 2024 | Identifying & Resolving Data Issues | Kenya | Identifying & Resolving Data Issues: Kenya | This was a follow up meeting from September 12 call centered on Identifying and Resolving data issues and Kenya’s approach On September 12, representatives from The CDC, Kenya, the Kenyan MOH, HealthStrat and Palladium presented on their collaborative journey to improve data quality within their current processes while moving towards digitization of systems in Kenya. We continued our community discussion with a brief overview of Kenya’s experience and deeper dive into the Framework for Identifying and Resolving Data Issues based on Kenya's process. The community discussed and provided feedback around the tools and interventions used at various gates in the data workflow to identify and resolve data issues. | https://wiki.ohie.org/pages/viewpage.action?pageId=265224206 |
| 9 October 2024 | Treatment Continuity | Kenya | Kenya Data Protection Act | Explored Kenya’s Digital Health Revolution: Insights into the new Digital Health Act, its Impact on Data Governance, and the challenges and lessons learned along the way. | https://wiki.ohie.org/display/CP/2024-10-09+Treatment+Continuity |
| 25 September 2024 | Patient Identity Management | Nigeria | Identity Management Collaborative Session: Nigeria Experience | We continued to discuss what work countries are doing around patient identity management. This month focused on the work Nigeria is doing. The PHIS3 team helped us understand the context in which they have implemented a fingerprint-based patient identity solution for HIV/TB patients. We also learned how this approach supports health data integrity and access. This call helped community members understand the current process and performance of the PHIS3 identity management solution as well as the scope of the national identification number (NIN) and plan to incorporate NIN into PIM in Nigeria. Lastly, we discussed strategies for optimizing PHIS3's health identity framework. Topics included data quality assessment methods, approaches to match performance evaluation, and privacy-preserving record linkage. | https://wiki.ohie.org/display/CP/2024-09-25+Patient+ID+Mgmt+Collaborative+Session |
| 12 September 2024 | Identifying & Resolving Data Issues | Kenya | Data Use Community: Data Quality | A kick off discussion on data quality. Dr. Davies O. Kimanga, MD, Msc shared Kenya’s journey with data quality and we began forming a framework for sharing best practices in data management to optimize data quality. | https://wiki.ohie.org/pages/viewpage.action?pageId=252739593 |
| 28 August 2024 | Patient Identity Management | Uruguay | Identity Management Collaborative Session: Uruguay Experience | Collaborative call where will continued to discuss what work countries are doing around patient identity management. During this session we learned about the success and challenges from Uruguay! Uruguay has had patient matching in place for several years and they shared their journey to scale and sustain a country-wide patient matching strategy. | https://wiki.ohie.org/display/CP/2024-08-28+Patient+ID+Mgmt+Collaborative+Session |
| 31 July 2024 | Patient Identity Management | Zambia | Identity Management Collaborative Session: Zambia Experience | During this 90 minute session, the community continued the conversations on Patient Identity Management. Chisanga Siwale & Muya Mwansa with the Ministry of Health in Zambia presented on Zambia's patient identity management experiences. The presentation addressed various aspects of Zambia's health information systems. Key points included the current integration between Electronic Health Records (EHR) and laboratory data, with unique IDs linking lab results back to client records. Challenges driving the focus on creating a client registry include high rates of duplicate records, with estimates ranging from 10% to 33%. Discussions have been initiated with the Ministry of Home Affairs to integrate their Integrated National Registration Information System (INRIS) with health data, but progress is slow due to national issues. The Central Repository (CR) is planned to expand beyond lab data to include a Shared Health Record (SHR), but implementation depends on establishing standards and overcoming capacity issues. Software options for the CR include JEMPI, OpenHIM, and OpenCR. There are ongoing efforts to leverage tools like eLIS for deduplication and to assess the functionality of integrated systems. Current data submission processes involve Smartcare and web interfaces, with deduplication efforts planned at the national level. Advocating for enforcing the National ID number linked to payment for care was also suggested. | https://wiki.ohie.org/display/CP/2024-07-31+Patient+ID+Mgmt+Collaborative+Session |
| 29 May 2024 | Patient Identity Management | Tanzania | Identity Management Collaborative Session: Tanzania Experience | Sosthenes Bagumhe & Kizito Mrema presented on Tanzania's National Health Client Registry. The discussion dove into the e-health strategy, notably spotlighting the implementation of the National Health Client Registry (NHCR). Established in collaboration with the CDC through MDH and MSH from 2018 to 2021, the NHCR operates without a singular patient identifier but employs unique identifiers, with widespread utilization across Tanzanian districts and integration with various health programs like immunization. Functionally, the NHCR registers clients, conducts deduplication and matching, resolves conflicts, and incorporates biometrics and identification authorities such as NIDA. Governance structures ensure system functionality and leadership at all health levels, while tools like Medic-CR, an open-source system, are employed. Privacy and security measures, including consent and resolution processes in the presence of clients, are rigorously maintained. Sustainability is ensured through sector-wide registry creation, technological leverage, and staff capacity building. Key lessons include the avoidance of siloed systems, the necessity of active CR service for effective electronic health record (EHR) integration, and mentorship to foster interoperability. During the Q&A, technical inquiries range from JSON usage to NHCR operational insights, while discussions extend to the potential future need for a dedicated CR and lessons from advanced countries, highlighting collaborative data-sharing patterns and international best practices. | https://wiki.ohie.org/display/CP/2024-05-29+Patient+ID+Mgmt+Collaborative+Session |
| 9 May 2024 | Treatment Continuity | Zimbabwe | DUC Treatment Continuity: Zimbabwe Experience | the Organization for Public Health Interventions &Development (OPHID) team from Zimbabwe shared about their work using data/technology to support individuals currently within a HIV treatment continuity gap to return to services, specifically including activities such as Intensive outreach interventions & Targeted adherence (fitting interventions to individuals to get them back to care). | https://wiki.ohie.org/display/CP/2024-05-09+Treatment+Continuity |
| 24 April 2024 | Patient Identity Management | Rwanda | Identity Management Collaborative Session: Rwanda Experience | Chief Digital Officer of Rwanda Ministry of Health, Sylvere Mugumya, joined this session & shared where Rwanda is currently at in their identity management HIE implementation journey. Rwanda uses national ID number to identity patients within the system. They are able to query this system to search for a matching record & pull the information for patients. This has greatly improved the speed of their registration process, but still has challenges ensuring all records contain complete & accurate information and are not duplicates. Rwanda is currently at the phase of focusing on interoperability between facilities to ensure adequate sharing of patient records while also maintaining privacy & security. Rwanda has taken great care to ensure personal identifying information privacy is maintained through an authentication process with the EMR. | https://wiki.ohie.org/display/CP/2024-04-24+Patient+ID+Mgmt+Collaborative+Session |
| 11 April 2024 | Treatment Continuity | Malawi & Zambia | DUC Treatment Continuity: Transient populations | This meeting was focused on managing health data for transient/cross-border populations: challenges and solutions. The discuss centered on those who manage patients who are transient, receiving some of their care at external facilities, or receiving care across borders. During this session we heard community members in Malawi & Zambia share examples of how they are dealing with transient patient populations, the challenges faced, and how data or technology interventions have been or could be applied to improve patient care in these contexts. | https://wiki.ohie.org/display/CP/2024-04-11+Treatment+Continuity |
| 27 March 2024 | Patient Identity Management | Botswana | Identity Management Collaborative Session: Botswana Experience | During this Collaborative Identity Management session community members connected on patient identity management efforts. During this 60 minute session, the community heard from colleagues in Botswana about their implementations of a client registry and how that fits in their health information exchange. | https://wiki.ohie.org/display/CP/2024-03-27+Patient+ID+Mgmt+Collaborative+Session |
| 1 February 2024 | Community Meeting | n/a | Annual Planning for 2024 | This was the 2024 kickoff meeting to collaboratively plan our community priorities & sessions for the new year. This 1-hour virtual meeting involved a quick summary of activities from 2023 & a collaborative session where participants shared suggestions for the Data Use Community in 2024. Prior to this meeting, we invited all community members to share their thoughts in the annual survey & read the 2023 Data Use Community review. | https://wiki.ohie.org/display/CP/2024-02-01+DUC+2024+Kick+Off |
| 29 November 2023 | Patient Identity Management | n/a | Identity Management Collaborative Session | During this 90 minute session, the community continued the conversation on the Patient Identity Management Toolkit with an introduction to the Biometrics Module. This draft highlights the key considerations for implementing biometrics as part of identity management in health care and public health programs, and showcases case studies from previous DUC community events. There was no presentations during this session. Community members provided input based on their experience to validate, enrich, & improve the usefulness of the approach. With input, this approach will be refined over time & will serve as a shared knowledge base for patient matching activities. | https://wiki.ohie.org/display/DR/2023-11-29+Patient+ID+Mgmt+Collaborative+Session |
| 25 October 2023 | Patient Identity Management | Ethiopia | Identity Management Collaborative Session: Ethiopia Experience | Dawit Birhan & colleagues from Ethiopia shared about the patient identity management initiatives taking place in Ethiopia. They discussed their work to uniquely identify patients, use of biometrics, challenges / successes, and more! After the presentation, there was an open discussion lead by the community members questions. | https://wiki.ohie.org/display/DR/2023-10-25+Patient+ID+Mgmt+Collaborative+Session |
| 12 October 2023 | Treatment Continuity | Kenya | DUC HIV Treatment Continuity Gap: Palladium Kenya | The community discussed how the Palladium Kenya team is using data/technology to support individuals currently within a HIV treatment continuity gap to return to services, including activities such as targeted counseling and/or training on prevention and wellness to address patient missed appointments. Community members from Palladium Kenya shared their current efforts and we invite others to join the discussion. | https://wiki.ohie.org/display/CP/2023-10-12+Treatment+Continuity |
| 27 September 2023 | Patient Identity Management | n/a | Identity Management: Implementing Person Matching Workshop | 90 minute session where the community continued the conversation on the Patient Identity Management Toolkit module focused on Implementing Person-Matching: Key Steps and Considerations. This draft outlines key steps for designing and implementing an effective approach for matching person-level records within and across health-related datasets. You can see the first draft here. There was no presentations during this session. Community members provided input based on their experiences to validate, enrich, & improve the usefulness of the approach. With community input, this approach will be refined over time & will serve as a shared knowledge base for patient matching activities. Please add your comments directly in the Matching Module Google document. | https://wiki.ohie.org/display/DR/2023-09-27+Patient+ID+Mgmt+Collaborative+Session |
| 14 September 2023 | Treatment Continuity | Nigeria | Treatment Continuity: The Nigerian Experience | This session consisted of a 60 minute sharing session to learn about the Nigerian experience with treatment continuity. They shared how they are using data/technology to support individuals currently within a HIV treatment continuity gap to return to services including activities such as targeted counseling and/or training on prevention and wellness to address patient missed appointments. Immediately following the 60 minute presentation, there was a 30 minute workshop to discuss the Technology Intervention Framework (TIF). The goals of this session were to share challenges when assessing the feasibility of technology-based solutions for a given health challenge; Offer feedback on what technical attributes would be helpful to document/capture about digital health interventions; and Contribute to the refinement of the TIF. | https://wiki.ohie.org/pages/viewpage.action?pageId=153124900 |
| 30 August 2023 | Patient Identity Management | n/a | Management: Implementing Person Matching Working Session | A 90 minute community meeting that looked at key steps for designing & implementing an effective approach for matching person-level records within & across health related datasets. The intended audience was health IT systems managers, developers, data analysts, & program implementers with the objectives to describe the key phases in the patient matching process & the specific actions in each phase. Subject matter experts, Dr. Shaun Grannis & Dr. Toan Ong, walked through the phases of this approach & asked the Community to provide input based on their experience to validate, enrich, & improve the usefulness of the approach. With the community input, this approach will be refined over time & will serve as a shared knowledge base for patient matching activities. | https://wiki.ohie.org/display/DR/2023-08-30+Patient+ID+Mgmt+Collaborative+Session |
| 26 July 2023 | Patient Identity Management | Zimbabwe | Presentation on Unique Patient Identification Management in Zimbabwe | Technical Project Lead Blessings Manyiyo along with Data Scientist Simbarashe Chaputsira & System Architect Patrick Mapuranga shared insights into the progress Zim-TTECH has made with unique patient identification management in Zimbabwe. ZIM-TTECH is a Zimbabwe local partner for Technical Assistance, Training, & Education for Health. A robust Q&A session followed this presentation where they expanded upon challenges, policies, accuracy, and more. | https://wiki.ohie.org/display/DR/2023-07-26+Patient+ID+Mgmt+Collaborative+Session |
| 28 June 2023 | Patient Identity Management | Rwanda | Presentation on Rwandan Health Information Exchange related to Identity Management | Loic Ntwali & Frank Kitema shared insight into the identity management work that is happening in Rwanda regarding health information exchange. Rwanda uses national ID number to identity patients within the system. They are able to query this system to search for a matching record & pull the information for patients. This has greatly improved the speed of their registration process, but still has challenges ensuring all records contain complete & accurate information and are not duplicates. | https://wiki.ohie.org/display/DR/2023-06-28+Patient+ID+Mgmt+Collaborative+Session |
| 8 June 2023 | Treatment Continuity | n/a | Intrahealth READI Approach being used within Central America for management of HIV clients | Amy Finnegan and Lucy Mphuru from IntraHealth shared the READI approach & how it has been used within Central America for management of HIV clients and their lessons learnt. READI stands for Rapid, Efficient, and Data-Driven Implementation. READI monitors program performance, accelerates project start-up, and conducts precision analyses that helps solve implementation problems before they start. | https://wiki.ohie.org/pages/viewpage.action?pageId=129238106 |
| 26 April 2023 | Patient Identity Management | Nigeria | How countries are linking person level data systems together in a National Data Repository (NDR) | Gibril Gomez with PHIS3 shared about the National Biometrics Collaborative work happening in Nigeria. Nigeria is working to move away from traditional biometric fingerprint capturing to a national Patient Identity Management System (PIMS) implementation. | https://wiki.ohie.org/display/DR/2023-04-26+Patient+ID+Mgmt+Collaborative+Session |
| 29 March 2023 | Patient Identity Management | Haiti & Malawi | How countries are linking person level data systems together in a National Data Repository (NDR)? | Christina White and Piotr Mankowski of DIGI ITECH-UW shared about the Client Registry work in Haiti to improve the ability to provide high quality care to patients to move between services, facilities and networks. Brett Onions from Luke International shared about the Demographics Data Exchange (DDE), the Master Patient Index (MPI) for Malawi, currently being developed by EGPAF in Malawi. Both presentations provided an overview of the current implementations and the attendees had the opportunity to ask questions that ranged from details on the technology and matching process. | https://wiki.ohie.org/display/DR/2023-03-29+Patient+ID+Mgmt+Collaborative+Session |
| 9 March 2023 | Treatment Continuity | Uganda & Malawi | Reducing Congestion at Health Facilities | Lighthouse Trust’s Innovations for Client-Centered Care: Community-based ART Retention and Suppression (CARES) App in Malawi. Lighthouse Trust clinics in Lilongwe, Malawi, use EMRs in static sites. But Lighthouse’s differentiated service delivery (DSD) programs, like its nurse-led community-based ART program (NCAP), do not benefit from EMRs. Lighthouse Trust, ITECH, and Medic, with support from the National Institutes for Health, will share their experience with their Community-based ART Retention and Suppression (CARES) App. CARES aims to provide a high-quality, point-of-care EMRs app in NCAP settings, enabling improved patient care and program-level M&E while reducing workload. Differentiated Service Delivery Models in UgandaEMR to decongest facilities. Samuel Lubwama and Edward Bichetero in Uganda will share their experience functionalizing the guidelines for Differentiated Service Delivery Models in UgandaEMR as a method for decongesting facilities. | https://wiki.ohie.org/display/CP/2023-03-09+Treatment+Continuity |
| 9 February 2023 | Metrics & Reporting | n/a | Community metrics and reporting workshop | This 90 minute virtual workshop was designed to take a deeper look at the metrics calculation and reporting processes with the goals of supporting and strengthening countries as they work toward using patient-level data for generating metrics for program planning, patient care and decision making. Goals of the session included: Understanding the different goals and needs for metrics reporting Sharing experiences and learning from others on calculation and metrics reporting processes Opportunities to build relationships and linkages between teams working on reporting challenges Gathering common challenges and practices Identifying ways the DUC can facilitate the teams in collectively moving forward | https://wiki.ohie.org/pages/viewpage.action?pageId=125337896 |
| 22 February 2023 | Patient Identity Management | Kenya | Unique Patient Identification (UPI) in Kenya | Unique Patient Identification (UPI) in Kenya. Presented by Dr. Joseph Sitienei, MoH Kenya Uniquely identifying patients is a critical component of Kenya’s efforts to deliver Universal Health Coverage (UHC) to everyone living within the country. Dr. Sitienei shared the strategy and the steps that the Kenyan government took to help ensure the implementation and acceptability of a UPI system to uniquely identify patients and deliver optimum health care. These steps included leveraging the country’s national person identification system and involving the community to “own” the process. Dr. Sitienei also shared various challenges faced throughout this process and solutions. As a next step the government and MOH will work to implement the UPI policy country-wide and eventually expand it include biometric identifiers. | https://wiki.ohie.org/display/DR/2023-02-22+Patient+ID+Mgmt+Collaborative+Session |
| 29 November 2022 | Patient Identity Management | n/a | JEMBI Master Patient Index | This PIM session featured Jembi sharing their patient identity management experiences & the master patient index (MPI) solutions that they are exploring. The conversation included: Use cases, challenges / solutions & tools, and also an Overview of JeMPI. | https://wiki.ohie.org/display/CP/2022-11-29+Patient+ID+Mgmt+Collaborative+Session |
| 16 November 2022 | Community Meeting | n/a | Where has the DUC been and where is the DUC going? | Data Use Community: Where we have been& Where we are going --- DUC Annual All Hands An annual all hands meeting. During this call we heard about the progress the Data Use Community has made this year and exciting updates for 2023. Participants learned about DUC opportunities, resources, and shared what their teams would find most valuable in the coming year. | https://wiki.ohie.org/display/CP/2022-11-16+DUC%3A+Annual+Feedback+Session |
| 7 September 2022 | Treatment Continuity | n/a | Data Use Acceleration and Learning (DUAL) | During this call the DUAL team joined and gave a presentation on their Data Use Acceleration and Learning Tool. They shared what works & what doesn't work to achieve digital transformation for data use. | https://wiki.ohie.org/display/CP/2022-09-07+Treatment+Continuity |
| 29 September 2022 | Metrics & Reporting | Malawi & Uganda | Evolution and Use of National Systems | During this session we learned about the journey towards strengthening information systems in Malawi and Uganda. They shared how they are leveraging national systems for PEPFAR and other reporting flows. We discussed the data flows, the engagement of Ministries in the process, successes and challenges, and next steps for maturity. | https://wiki.ohie.org/display/CP/2022-09-29+Metric+Reporting |
| 24 August 2022 | Patient Identity Management | Côte d’Ivoire | Biometrics Collaborative Session | The call consisted of community members sharing information and experiences regarding using Biometrics for identity management. Alexandra Grigore, CPO with Simprints shared a general overview of biometrics use for Patient Identity Management. They addressed drawbacks (ex. duplicates and unreliable data), examples of types of biometric data (ex. fingerprints, facial recognition), how they are used, and a couple specific case studies regarding biometric use. Link to slides shared. Nicolas de Kerorguen a Contractor for CDC/CGH/DGHT/HIDMSB/Health Informatics Team and Franck Aghan a Software engineer SEJEN based in Côte d’Ivoire shared lessons learned from the use of fingerprint biometric technology in Côte d’Ivoire. They discussed background information, challenges associated with fingerprint use, and direct observations from their work. Link to slides shared. | https://wiki.ohie.org/display/CP/2022-08-24+Patient+ID+Mgmt+Collaborative+Session |
| 27 July 2022 | Patient Identity Management | n/a | DUC & OHIE Collaborative Session for Patient Identity Management Toolkit | This was a collaborative session on Patient Identity Management with the Data Use Community and OpenHIE. The DUC had been working on creating a toolkit of best practices regarding experiences and issues related to Patient Identity Management. In a recent meeting members of the DUC asked to collaborate with more people who are working on identity management. Going forward the community now plans to collaborate with the Patient Identity Management sub-community of OpenHIE to continue working on this toolkit and get feedback from additional subject matter experts | https://wiki.ohie.org/display/CP/2022-07-27+Collaborative+Patient+ID+Mgmt+Session |
| 13 June 2022 | Patient Identity Management | n/a | DUC Collaborative Session for Patient Identity Management Toolkit | During this session, we reviewed the draft of proposed content for a Patient Identity Management Toolkit and asked for community input on the following: • Is there content in the proposal that is of special interest/high priority? • Is there anything missing in the proposed content that should be included? • Are you currently working on patient identity management projects that you would be able to share? • Are you interested in continued collaboration on this Patient Identity Management Toolkit? • How would you like to see the content in the toolkit shared? | https://wiki.ohie.org/display/CP/2022-06-13+Collaborative+Patient+ID+Mgmt+Session |
| 22 June 2022 | Patient Identity Management | n/a | DUC Collaborative Session for Patient Identity Management Toolkit | During this session, we reviewed the draft of proposed content for a Patient Identity Management Toolkit and asked for community input on the following: • Is there content in the proposal that is of special interest/high priority? • Is there anything missing in the proposed content that should be included? • Are you currently working on patient identity management projects that you would be able to share? • Are you interested in continued collaboration on this Patient Identity Management Toolkit? • How would you like to see the content in the toolkit shared? | https://wiki.ohie.org/display/CP/2022-06-22+Collaborative+Patient+ID+Mgmt+Session |
| 11 May 2022 | Patient Identity Management | n/a | DUC Collaborative Session: Patient Identity Management | This session was an opportunity for DUC community members to share more about patient identity management challenges. From smaller group conversations, we have identified some shared challenges and current practices. Our goal was to bring these findings to the full community, gather more input through an interactive collaboration activity, and come up with next steps together to work toward meeting community needs. | https://wiki.ohie.org/display/CP/2022-05-11+Collaborative+Patient+ID+Mgmt+Session |
| 31 March 2022 | Patient Identity Management | n/a | Patient Identity Workshop | The following is a summary of the current identity practices that were shared: The group first established an overview of the current state of HIV identity practices: Although most countries have a national ID, there are challenges with using it for HIV care Countries are using or looking at solutions for a client registry (CR) / enterprise master patient index (EMPI) Countries are using or planning to use human adjudication and algorithmic matching. | https://wiki.ohie.org/display/CP/2022-03-31+Patient+ID+Mgmt+Workshop |
| 8 February 2022 | Treatment Continuity | Nigeria & Haiti | Data Integration Across Facilities: Determining a Patient's Real Treatment Continuity | This meeting focused on the topic of "Data Integration Across Facilities: Determining a Patient’s Real Treatment Continuity." The community participated in a conversation on identified patterns used to integrate patient-level data across facilities to better discern true HIV retention for an individual. Morrison Idiasirue, CiHEB Regional Software Developer, and Stephen Ohakanu, CiHEB Director of Health Informatics, with CiHEB Nigeria shared the Nigeria National Data Repository as the unified data storage and analysis facility that houses de-identified patient level data for HIV tx data. Kemar Celestin, HIS Coordinator with CHARESS Haiti, shared on secondary use of data from Haiti's iSantéPlus National Electronic Medical Record system to reduce loss-to-follow-up via alerts, routine data to analyze implementation and site-level performance, as well as by carrying out national-level program and policy evaluations. Following these presentations was a Q&A to dive deeper into the details shared and the speakers also spoke to more technical-level processes from their experience. | https://wiki.ohie.org/pages/viewpage.action?pageId=90573300 |
| 9 November 2021 | Metrics & Reporting | Mozambique, Zambia,& Namibia | From Patient-Level Data to Indicator Reporting: Exploring Country Patterns | This meeting focused on the topic of "From Patient-Level Data to Indicator Reporting: Exploring Country Patterns." The community took a look at the state of metrics reporting, promoted learning across contexts by hearing from individual country experiences on reporting patterns and data flows. We also heard some emerging work that impact reporting standards and processes. Community members Jennifer Shivers and Jason Knueppel lead this call. Jason shared more on the PEPFAR and Ministry of Health Data Alignment Activity as an example to help understand the full HIV landscape and better define targeted interventions. We were then introduced to community members who shared more about the approaches they are involved in for indicator reporting on this call: Dominique Vite with PEPFAR in Mozambique Victor Kabwe with PEPFAR in Zambia Jason shared about Namibia's processes with information provided by Michael De Klerk. | https://wiki.ohie.org/pages/viewpage.action?pageId=88932742 |
| 12 October 2021 | Community Meeting | n/a | Synthesizing & Shaping: Where We've Been and Where We're Going | This meeting synthesized conversations from previous meetings that dug deeper into the working model which was first introduced in the March 2021 community meeting. The October meeting focus was on sharing an overview of the interventions that have been shared with the community to date. The meeting was also designed to get feedback and input from community members on additional needs and topics that the community would like to see addressed. Paul Biondich, a community lead for the Data Use Community, started the presentation by sharing background on the formation of this community along with its mission, purpose, and the progress we've made to date. Paul then shared how we've organized this through the field experiences that have been shared on this call by creating a framework/working model now titled, "Technical Interventions Framework (TIF): HIV Treatment Continuity". The TIF was made to start creating common understanding of implementer approaches through agreeing on a common way to talk about / look at HIV treatment continuity. Next, Olivia shared about a project to create canvases across interventions in the TIF. The Touchpoint Canvas is a visual framework for understanding different components of an intervention. Following this presentation, Kasey Upchurch, led a feedback session for input on how community members have felt about this community so far and the direction they would like to see for the future of the DUC. | https://wiki.ohie.org/pages/viewpage.action?pageId=85525486 |
| 14 September 2021 | Treatment Continuity | n/a | Touchpoint Interventions: Proactive Adherence Counseling | Teams presented on the following: Palindrome is a data science implementer specializing in machine learning, predictive analytics and alternative data services. Alongside their partner, Right to Care, the two teams shared how they are using AI to create a model that can predict whether a patient will miss their next scheduled appointment and become LTFU. The machine learning work was tested in six facilities in one district in South Africa, using paper adherence scorecards and digital adherence scorecards. DataFi, Data for Implementation, is a consortium of partners. The team shared their work in Mozambique to deploy a predictive model as part of a software solution connected to OpenMRS, the EMR used at ECHO-supported facilities. They will be creating a software plugin to generate patient risk scores through the EMR. The project work can be described in four stages 1) data collection, 2) machine learning, 3) systems integration design and implementation (the current project stage), and 4) assessment and scale up. One of the project partners, Macro-Eyes, developed the OpenMRS module that will be deployed at facilities. | https://wiki.ohie.org/pages/viewpage.action?pageId=83398041 |
| 10 August 2021 | Treatment Continuity | Tanzania, Botswana | Using Patient Record Systems to Generate M&E Reports for HIV Treatment Continuity | These two presentations shared on the following: Clement Marcel from CiHEB Tanzania shared on the "Care and Treatment Analytics Tool" and how it is used to provide additional deep dive analytics to ensure that HIV care and treatment data informs and supports the programs and the National EMR. This tool is able to link with different tools for triangular data and allows cross-monitoring analysis. The data elements in this tool are deidentified patient-level data, such as visit date. Currently this tool is used in 31 regions and 1,300 facilities where three million clients and 155 million records were tested. Kagiso Sebina from CiHEB Botswana shared their presentation on "Data Based Community: Do we have the Data to use?" and how they addressed challenges with unique ID use, high mobility with patient populations, and matching and de-duplicating records. | https://wiki.ohie.org/pages/viewpage.action?pageId=68074978 |
| 8 June 2021 | Treatment Continuity | Rwanda, Kenya, Zambia | Touchpoint Interventions: Missed Appointment Reminders | These three presentations shared on the following: Santiana Munezero from the Rwanda Biomedical Center shared their appointment management strategy. This team utilizes an EMR system structure through OpenMRS to maintain patient information from registration through follow-ups and retention practices. The appointment management for HIV patients includes a model for scheduling and the process following a missed appointment: 1) Identification, 2) contact tracing, and 3) updating records. A few challenges were also noted; the appointment module is not ideal in meeting requirements for HIV appointments, only paper tools are used by providers for A.R.T. pickup, and local servers at facilities have not been easy to use. Evelyn Too from AMPATH - Kenya shared they have found that clients miss appointments due to forgetting the appointment, self-transferring, transit-related challenges, and a busy work schedule. There are also times where a patient is deceased and it is not noted in their management system. A team of experts planned how they could automate their processes including developing reports, automating the defaulter tracing registers that were formerly paper-based, and training retention staff on accessing AMRS and generating missed appointments daily. Evelyn also shared the missed appointment management process. Jacob Mutale and Komba Sikombe from CIDRZ - Zambia presented on a project called "Leveraging Person-Centered Public Health for HIV Treatment in Zambia (PCPH)". In facility interviews, the team found that those who had missed appointments were related often related to clinic-based barriers and structural barriers. Through other survey data, there were other reasons for missed appointments they dug deeper into like patient's experience with staff. | https://wiki.ohie.org/pages/viewpage.action?pageId=68074638 |
| 11 May 2021 | Treatment Continuity | Ethiopia, South Africa, Kenya | Touchpoint Interventions: Pre-Appointment Support | These three presentations shared on the following: Desalegn Bekedami from iCAP-Ethiopia shared the EMR-ART system and how it traces clients who have missed their appointment. This list is shared with adherence counselors and clinicians who use color coded displays to identify patients to call with reminders. Ashley Sorgi from EGPAF shared the digital solutions for quality improvement (QI) and pre-appointment strategies. There was a QI evaluation on HIV care in South Africa. The QI-PM application is both a mobile and web based tool that enables EGPAF staff to track site-level QI projects overtime. David Mukungi and Esther Kanyang'onda from IntelliSOFT presented on eHospital, a client management module project in Kenya that ran from June 2019 to September 2019. This is an adaptation of Bahmni, is powered by OpenMRS to track patients, support clinical decisions, report and document management, support an entire facility, and is interoperable. They also shared on SSEMR, a project in South Sudan. This system connect Bahmni and syncs offline to register patients, view records, and enter patient data. This system also identifies missed appointments and viral loads as well as flag patients for the physician until they are enrolled. | https://wiki.ohie.org/pages/viewpage.action?pageId=68074456 |
| 13 April 2021 | Treatment Continuity | Haiti, Kenya, Malawi | Touchpoint Intervention: Reactive Adherence Counseling | Three presentations were featured on this call to share experiences with this touchpoint. Nancy Puttkammer from I-TECH at the University of Washington presented about experience from the InfoPlus Adherence Project in Haiti. This goal was to develop an EMR based alert to signal patients at high risk of HIV treatment failure and to incorporate the story-telling culture by enacting a provider-led brief counseling approach called “My Adherence Stories”. Pinto Shukuru from LVCT Health in Kenya presented on the STEPS Project. This project aims to increase the availability and demand for comprehensive quality HIV prevention services to priority populations in high HIV-burdened counties of Western Kenya. One solution that was explored was the use of flags in the EMR. When a service provider accesses a patient’s chart, key items are flagged on the patient’s dashboard; missed appointment, due for viral load, pending viral load results, high viral load, and instability. The EMR also allows a facility to see the number of clients expected and those with an unsuppressed viral load as well as a list of clients with missed appointments for tracing. Limbani Thengo from Partners in Health presented on Electronic Tracking Retention and Client Enrollment (TRACE) in the Neno District of Malawi. This project includes community health workers and staff members to make home visits to patients who have missed visits and those who are enrolled in programs that identify patients at-risk of falling out of care due to location and other programs. | https://wiki.ohie.org/pages/viewpage.action?pageId=68074246 |
| 9 March 2021 | Community Meeting | n/a | Bringing it Together: Lessons Learned So Far | This meeting was a collaborative working session to look at version one of our working model. The model is an attempt to describe the care process around HIV treatment continuity, rather than a formal model that describes the entire care cascade and the way data flows. The purpose of the model is to help build a common language and understanding of what we are learning through the DUC and provide a framework for sharing that information. | https://wiki.ohie.org/pages/viewpage.action?pageId=68074125 |
| 9 February 2021 | Treatment Continuity | Kenya, Uganda Haiti, Nigeria, Malawi | Medical Records and Continuity of Treatment (Retention) | This meeting featured short presentations from national EMR implementers discussing how these tools are used in the continuity of treatment (retention): KenyaEMR was presented by Otieno Benard of Palladium’s KenyaHMIS II Project. The system is implemented in over 800 facilities. They identified four categories of features that support retention: clinically oriented features, such as appointment management; reports and line-lists; support for clinical appointment keeping; and custom reporting. The data is shared into a national cohort dataset allowing decision-makers to identify gaps in retention and where to support interventions. UgandaEMR was presented by Stephen Senkomago Musoke with the METS program. The system has been implemented in over 1000 sites with the flexibility to do point-of-care, retrospective, or hybrid data entry. Point-of-care queueing allows for tracking of patients during care so patients are not lost. Dashboards are used to support clinical decision making and give an overview of lab tests and results. The EMR integrates with a mobile app that allows CHWs to assess those who have missed appointments and those that need follow-up to do assessments in the community. iSantéPlus (Haiti) was presented by Kemar Celestin of Centre Haïtien pour le Renforcement du Système de Santé (CHARESS). The EMR supports a number of reporting tools that allows providers to see lists of patients that have missed appointments, if they are due for viral load testing, or need medications. The Continuum of Care document provides a summary of all the care the patient has received and allows the data to be transferred to between iSantéPlus sites. NigeriaMRS presented by Gibril Gomez of Jhpiego and implemented in 1000 hospitals. The system supports custom notifications for appointments, medication pick up, and lab reminders. The community pharmacy allows patients who are stable and receiving care to pick up medications and nearby pharmacies. Lafiya Management Information System (LAMIS Nigeria) presented by Alexander Alozie of Data.FI. LAMIS has been implemented in over 700 facilities. The system supports a number of treatment continuation features including: SMS Reminders for clinic visits, drug refills, and viral load investigations; case management; client status notifications; and LAMISLite which works on a mobile device and supports CHWs in the community. PIHMalawiEMR presented by Limbani Thengo. Patient’s identified in the appointment report as being missing for two or six weeks are then put into the Tracking Retention and Client Enrollment (TRACE) process. First they will verify the missed appointment is not due to missed data entry, then they signal CHWs via a mobile app to conduct outreach to bring the patients back to care. eSwatini CMS presented by Mzawandile Viakati. The system integrates with the national system allowing registered patients demographics to be accessed from any facility. The system provides 92% of the data needed for monitoring the 95-95-95 goals. | https://wiki.ohie.org/pages/viewpage.action?pageId=68064395 |
| 12 January 2021 | Treatment Continuity | Ethiopia, Kenya, Malawi, Zimbabwe | Approaches for Patient Reminders and Tracking | The meeting featured three presentations of solutions for patient reminders and tracking: Unified Data System: Project HOPE and Dimagi presented their tool, which is being used in Ethiopia to standardize data capture and case management systems for all PEPFAR and USAID-funded community HIV activities. The tool allows Community Engagement Facilitators (CEFs) to document and share tracing efforts and outcomes. This has resulted in improved retention in care through re-engagement and reduced attrition. Ushauri: Family AIDS Care & Education Services (FACES) and mHealth Kenya presented the Ushauri project, a mobile and web-based platform for improving health outcomes of people living with HIV by providing timely and reliable messages including appointment reminders, treatment adherence, and wellness. Two-way texting (2WT): This project was implemented by I-TECH and Medic Mobile in Zimbabwe and Malawi to improve retention efforts and reduce wasted effort related to poor retention data quality. | https://wiki.ohie.org/pages/viewpage.action?pageId=68060640 |
| 11 November 2020 | Patient Identity Management | Haiti | Identity Linking and Opportunities for Partnership | Richard Stanley of IntraHealth gave a presentation on identity linking. Richard explained that tools to link patients across systems will make it easier to use clinical data for care coordination, reporting, monitoring, surveillance, and research. For example, being able to determine that a patient is receiving care in another facility without having to rely on direct outreach efforts. Dr. Stanley described a client registry, or enterprise master patient index (eMPI), which is an authoritative, standardized, and up-to-date list of patients that uses matching methods that compare demographic identifiers to link patient identities. | https://wiki.ohie.org/pages/viewpage.action?pageId=63373470 |
| 13 October 2020 | Treatment Continuity | Kenya, Malawi, Mozambique | Sharing Field Experiences: Engaging and Building Impact Squads | During this month’s meeting several members shared their experiences: Edwin Mulwa of the FACES (Family AIDS Care and Education Services) program in Kenya discussed the frequency of missed appointments and the lack of concordance between paper systems and the EMR. Sara Van Rompaey of Friends in Global Health in Mozambique noted similar challenges that Edwin had. Most health facilities have OpenMRS and they are implementing this with iDART (Intelligent Dispensing of Antiretroviral Treatment) at dispensaries as a means of tracking medication compliance. Nicky Kimaina of AMPATH Kenya uses a point-of-care system built on top of OpenMRS. The system allows them to verify if a patient has moved between facilities (150 facilities total, 46 are using MRS, about 80 using KenyaEMR), so they are not incorrectly counted as LTFU. Elizabeth Wetzel and Alex Kabwinja shared the experiences of Baylor College of Medicine Children’s Foundation in Malawi, which supports 120 facilities. There is a point of care EMR used by providers and a back-end system, eMastercard, used for retrospective data entry. They noted that gaps in data make it difficult to quantify true LTFU. Osoti Osoti of the Afya Nyota ya Bonde project in Kenya noted that almost half of their 65 sites are using KenyaEMR. He noted that having a POS system improves data use giving access to real-time data though they are not able to share data with non-KenyaEMR systems. Steven Wanyee of Kenya developed a proof of concept for the implementation of a digital health solution focused on HIV/TB/Family planning programs, specifically targeting cross-border health service delivery. This is an issue not only for interoperability but legal ramifications of sharing data between countries. | https://wiki.ohie.org/pages/viewpage.action?pageId=58589601 |
| 1 September 2020 | Treatment Continuity | n/a | Community Formation Moving Forward - Structured for Impact | Introduced a new collaboration tool, Discourse. This tool will allow us to archive discussions that take place during meetings and serve as a forum to continue conversations after the end of the meetings. You may access the DUC Discourse Tool at https://discourse.duc.ohie.org/. During the meeting we noted three areas related to LTFU/retention to stimulate conversation: Appointment Management – The ability to know which patients are supposed to return and when they are supposed to return. "Missed Appointment" Identification – Identification of patients who have missed an appointment or a medication pick-up and require intervention. "Missed Appointment" Resolution – The methods for documenting the status of a patient that has missed an appointment or a medication pick-up and integrating this data into appointment management and defaulter tracing strategies. | https://wiki.ohie.org/display/CP/01+September+2020+DUC+Community+Meeting |
| 21 July 2020 | Treatment Continuity | Kenya and Nigeria | HIV/AIDS Treatment Retention Outcomes: Field Perspectives on Data Use | Speakers from Kenya and Nigeria who discussed electronic medical record (EMR) implementations where patient-level data is collected and merged into a shared health record and/or data warehouse that allows for analysis and reporting of data. | https://wiki.ohie.org/display/CP/21+July+2020+DUC+Community+Meeting |
| 16 June 2020 | Community Meeting | Mozambique, Uganda, and Zambia | DUC Meeting–Kick-off | Practitioners presented their experiences and research from Mozambique, Uganda, and Zambia on viral load suppression, root causes of missed appointments, understanding LTFU, and clinical mentoring to health care providers. This led to a rich discussion on the role of patient experience and satisfaction in retention in care as well as information systems investments made to improve retention, given limited resources. Several practitioners on the call noted that rudeness and poor treatment of patients are common in many facilities. These negative experiences occur from reception through provider interactions. There are little data available to practitioners about patient experience and its impact on LTFU. Further, practitioners noted that interventions to improve health workers' attitudes towards patient and patient satisfaction have not been widely disseminated. | https://wiki.ohie.org/display/CP/16+June+2020+DUC+Meeting+Summary |
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