01 September 2020 DUC Community Meeting

In this meeting, we 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/. Please sign up and introduce yourself.

Through our DUC conversations and qualitative interviews of members, we have noted that clinical staff have anecdotal experiences around HIV retention and LTFU that are not being captured and shared. There may be localized solutions to address LTFU, but they are at varying levels of maturity and adoption and sharing learnings and best practices have been difficult. Through the use of Discourse, we will gather information on anecdotal experiences and support clinicians in interpreting that information. Furthermore, Discourse will allow our community to document and build consensus around solutions together.

During the meeting we noted three areas related to LTFU/retention to stimulate conversation:

1. Appointment Management – The ability to know which patients are supposed to return and when they are supposed to return.
2. "Missed Appointment" Identification – Identification of patients who have missed an appointment or a medication pick-up and require intervention.
3. "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.

Across these three topic areas, data quality issues related to accuracy of a patient’s retention status was deemed a challenge. This may lead to wasted efforts on patients that do not need follow-up. Many facilities are still using paper-based systems for appointment management. Most dispensaries do not have EHRs and not all facilities have them. Analyzing paper data or sharing data between facilities is a challenge.

Our participants shared some solutions they have used to address patient tracing. For example, in Malawi, Lighthouse Trust has a successful tracing program that uses a combination of texts, calls, and home visits. Other participants shared both SMS and community health worker outreach as a means of finding patients. Several participants noted that it is difficult to get resources for digital tools and that pooling resources to develop tools that can be used in multiple settings will more likely be successful. Furthermore, LTFU/retention is an issue across the care spectrum and should not be limited to HIV only solutions. There was consensus on searching for solutions that worked across silos of care/funding.

Another participant pointed out that many of the solutions we were discussing were from the clinician’s perspective. LTFU has a component from the patient's perspective, intentionally or unintentionally. We need to look holistically to understand why patients miss appointments or do not return to care which cannot be determined with a tracking system. Participants suggested questionnaires regarding LTFU and areas for improvement to understand the patient perspective better and being able to tie that data back to the tracking system. Finally, we discussed the ongoing challenges for tracing patients who may not have provided accurate information due to HIV stigma and have consented to be located for treatment. These challenges have been further exacerbated by patients foregoing care due to fears of COVID-19.