Can data save lives? Exploring how data can help reach epidemic control
Moderator: Vanessa Carter (Health Care Social Media and Communications South Africa)
Date: Tuesday, 11 June 2019
Time: 13:30 – 14:30 (SAST)
Hashtags: #TBHIVCare #DataSavesLives
How to participate:
Start your answers with T1, T2, T3, T4 or CT for transcript purposes. Answer only after the moderator prompts. Questions will be prompted every 10 minutes, but keep answers coming using the relevant T and number. Anyone can participate! Use the #TBHIVCare or #DataSavesLives hashtag in all your tweets so that you are visible to others in the chat and on the transcript.
Chat Overview
Join us for a 60-minute Twitter with TB HIV Care – live from the 2019 SA AIDS Conference in Durban. Everyone is welcome to join the chat, including those at the conference and those not, doctors, nurses, entrepreneurs, policymakers, advocates, academics, pharma, educators, students, IT developers, journalists, data scientists, civil society, NPOs, researchers, etc. both locally and internationally.
Our topic for this session focuses on data – and how innovations in data collection, analysis and reporting can help South Africa achieve epidemic control.
The transcript will be recorded by Symplur Analytics (https://www.symplur.com).
Questions
T1: Why is data so important in the HIV response?
T2: What are some of the biggest challenges to collecting data for HIV/AIDS in South Africa?
T3: Have you seen data make a tangible difference in the HIV response? Can you share an example?
T4: How can innovations or new approaches help close the gaps in the HIV response?
Closing: What other thoughts would you like to add?
Blog: Can data save lives? Exploring how data can help reach epidemic control
In a study published in 2016, AVAC (Global Advocacy for HIV Prevention) warned that major gaps in global HIV/AIDS data stand in the way of delivering HIV prevention advances to millions of people around the world. The report identified several critical weaknesses in HIV prevention data collection and monitoring systems, with Mitchell Warren, AVAC’s Executive Director saying, “In an era in which big data are expected to improve essentially every part of our lives, there’s no excuse for HIV prevention data systems to be so uneven, incomplete and inefficient. To have any chance of ending the epidemic by 2030, we need to be collecting and accounting for every bit of useful information from every person living with or at risk for HIV.” (Source: https://www.avac.org/press-release/data-gaps-hinder-global-efforts-reduce-hiv-infections-avac-report-warns-improved-data)
The study reports that today’s HIV prevention data is:
- Not sufficiently broken down by age, gender, income status, key population status and other vital categories
- Missing or incomplete for key populations most in need of prevention, including adolescent girls and young women, men who have sex with men, transgender women, and others
- Not tied to useful HIV prevention metrics and indicators, so that it is impossible to know whether prevention programs are actually averting infections and improving health
- Not effectively informing the HIV prevention research agenda
Three years on from this report, does the landscape look any different for HIV prevention? Crucially, gaps don’t only exist in HIV prevention, there are also significant issues in terms of data on the care and treatment of people living with HIV, including:
- The link between data and health facilities
- Patients often move between facilities, but their health records don’t (leading to incomplete clinical records or duplication of records)
- Data is often not reviewed, meaning gaps are not identified and opportunities are missed
- Under-capacitation of clinical staff, i.e. staff need to be capacitated and supported in terms of data literacy, to empower them to use data for decision making
How do we address these issues? Are new systems and innovations having an impact?
During this 60-minute session, we examine both the challenges and opportunities surrounding HIV/AIDS data, explore how data can help South Africa achieve epidemic control and examine what we can do differently. This session is hosted by TB HIV Care as part of their SA AIDS Conference 2019 conversations.
