Meeting Goals:

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• Get to know one another

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• Start sharing diverse perspectives on retention and LTFU

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Engagement Process

Systems / Creative Problem-Solving Approach

Engaging diverse and holistic viewpoints

To improve care through leveraging data effectively

• Systematic look at process and technology
• Cross-agency
• Elicit and uncover on-the-ground needs
• Shared values

• Care providers
• Community Workers
• Data managers
• Epidemiologists
• Strategic information advisors
• Surveillance officers
• Monitoring and evaluation officers
• Program managers
• Health information system managers
• System/database administrators
• Data scientists

• Improve the quality and timeliness of data collected for patient care and clinicians.
• Streamline process efficiency through user engagement.
• Reuse data for surveillance and health system monitoring and other secondary uses.

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Current Use Case: Retention and Loss-To-Follow-Up

The DUC proposes to initially focus on guidance regarding approaches for enhancing retention and reducing loss-to-follow-up (LTFU). As many countries supported by PEPFAR approach epidemic control, it is becoming clear that some of the remaining “last-mile” obstacles can only be addressed through the use of longitudinal patient-level data. Alongside retention and loss to follow-up, the DUC will repeat this framework for other areas of the HIV continuum and for other disease domains as well.

The reporting timeframes (e.g., quarterly) for the data used in monitoring the programmatic interventions designed to address these obstacles are too protracted to be effective at impacting patient care.

As the lack of real-time, patient-level longitudinal data has become a more visible sticking point to the attainment of epidemic control, PEPFAR country teams have begun to ask for assistance in addressing these last-mile obstacles.

Many PEPFAR country programs are already prioritizing investments in patient-level information management approaches in their health systems, with an increasing focus on point-of-care delivery.

• Each DUC participant is an expert of their own experience and can add to the group’s collective understanding.

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• Diverse perspectives are valued and needed to work on complex challenges like patient retention.

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• We agree to listen with an open mind.

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• Participants are free to use the information received, but please do so in a way that respects the privacy of those who share

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• There is no, “one right answer” that fits all contexts. We will learn and iterate forward together.

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Feel free to reach out to the DUC facilitation team at any time (jeshiver@regenstrief.org) if you have additional thoughts that you were not able to share in the group.

DUC Community Agreement

• Community formation / engagement
• How can we use the strength of community to increase retention?

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• Understanding “the system”
• Look at the different levels of the complex challenge of retention to identify places where the community can impact change
• Community member needs and impact points
• Needs / “user stories” from your perspective
• Are there priorities?
• What tools might help?

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• Community co-creation, input and feedback on tools and best practices that may be created:
• Maturity model
• Patient and /or Clinic Personas
• Literature Analysis

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We Imagine Future Topics

Viral load suppression rates in Zambezia province, Mozambique

Snapshots of key indicators for discussion Data Use Community, 16th June 2020

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6/16/2020

Adults currently on ART

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6/16/2020

Children currently on ART

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6/16/2020

Viral Load Coverage

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6/16/2020

Viral Load Suppression rates

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6/16/2020

Root Causes of Missed Appointments in HIV Care and treatment: Clients’ Perspective

Julius Ssendiwala

Technical Advisor

Makerere University School of Public Health

DATA USE COMMUNITY

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June 16^th, 2020

Design, Methods and Implementation Status

• Design: Cross sectional at 152 sites with high numbers (80%) of missed appointments in 69 districts

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• Methods:

Structured Interviews of 5,153 reachable clients that had missed their clinical appointments at health facility or community setting (Responses were given by care givers in case of children). Question: What was the main reason for missing your appointment at the health facility?

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Analysis: Tally and frequency tabulation of client responses. Pareto Analysis used to determine the root causes by applying the 80:20 rule.

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• Implementation status:

Project completed and abstract developed for presentation at IAS 2020

Apart from ‘fear of being associated with HIV Tx (males)’ and ‘attending to a sick relative (females)’, root causes didn’t vary by age and sex

Age disaggregation

256 clients (5%) are below 15 years

4717 clients (95%) are 15 years and above

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Sex disaggregation

2942 clients (59%) are females

2031 clients (41%) are males

Key Findings

• Strengthening DSD models which will focus on reducing frequency of clinic appointments
• CCLAD and CDDP models need to be strengthened
• Innovations to address HIV stigma and improved access to HIV care among males are critical.
• Reinforce male friendly services
• Intensify follow up of males in care
• Establish support systems for HIV-positive males.
• Clients perspectives are critical in HIV programming if we are to end the AIDS epidemic
• Similar project on Viral Suppression is ongoing

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Implications for National HIV Response

• All CDC and USAID supported implementing partners
• Facility managers and administrators

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Contact info:

• Ssendiwala Julius email: jsendiwala@musph.ac.ug
• Telephone: 0752 983642

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Acknowledgments and Contact Info

Please give us your input and feedback.

http://tiny.cc/duckickoff

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