Initiated in November 2019, the Data Use Community (DUC) has been working on building
the foundation and networks to launch our community. After a multitude of conversations with various stakeholders and months of
preparation, our Community Kick-Off was hosted on June 16, 2020, addressing HIV continuity of treatment outcomes. Understanding we are not the
experts on HIV continuity of treatment outcomes, we facilitated a discussion with individuals who are working in the field and other subject
matter experts. The event was well-attended by 80+ participants from various backgrounds, professions, and geographic locations.
During the meeting, various approaches to increasing continuity of treatment were discussed.
It was emphasized that it is important to center the experiences of patients, as well as users of the technology. It will be necessary
to focus on improving the quality of patient data that is collected and tracked by clinics. The following were the approaches that
participants shared to better evaluate patient experience in the clinic:
- Determining reasons for missed appointments by asking patients about their main reasons for missing their appointments.
- Comparing which of two contributing factors to attending treatment mattered to them more, in which it was found that patients
were willing to travel longer distances if it meant that they would encounter friendly clinical staff, underlining the importance
of taking patients’ experiences and priorities into account.
- Weekly/daily metrics collection and discussions about the metrics collected.
- Appropriately shifting work to lay workers where providers were limited.
Overall, there were two high-level takeaways:
- The reasons for continuity of treatment-related issues in HIV treatment are highly variable.
- There are multiple levels at which continuity of treatment rates can be addressed (policy, systemic, and clinic-level). There was a proposal
that the current focus should be at the clinic/patient level since much work has already been put into the other two levels.