Our second meeting featured 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.
The speakers explained details of how data is analyzed and used by these systems, such as:
- Sampling-based approach to ascertaining lost to follow-up
- Location-based analysis of LTFU with regard to events in the community that may hurt retention rates
- Measuring the scope of data reported to the data warehouse
- Measuring the implementation of EMRs
- Measuring and tracking retention by county
- Retention analysis
- Determining when in the treatment process the most LTFU occurs. Note that in both cases the most LTFU occurred right after ART initiation.
- Measuring retention treatment outcomes over years (i.e. death, silent transfer, documented transfers, LTFU, active)
- Measuring reasons for disengagement and reasons for silent transfer
- PEPFAR indicator analysis
- Regimen Analysis
- Infection surveillance and mortality surveillance
- Quality assessment of EMR data through checking for consistency and completeness of the patient record
There was rich discussion during the meeting regarding data quality issues that impact analysis of LTFU such as documentation issues, duplication of files, backlog entry, delay in pushing data from EMR to national warehouses, and silent transfers (when a patient transfers care to a new facility without alerting the old facility). Additionally, the challenge of sharing data, particularly at cross-border sites remains a challenge in tracking patients. There was also discussion around the need to clarify what is truly considered LTFU.
Continuing the discussion from our first meeting, we discussed strategies that practitioners in our community have used to increase patient engagement. Examples of digital tools that have been implemented to addressed patient engagement were shared and further investment is needed where these tools have been shown to be effective. Other strategies included adherence counselors and peer navigators. Such interventions need timely data and information regarding patients to be effective.
Moving forward, the format of these community meetings will shift to be more community-centric, rather than presentation focused. The goal will be to have more interactive discussion and participant engagement.