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Tweetchat 1: Can data save lives?

SA AIDS Conference 2019:  Tweetchat 1

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.

Red Lace Race 2019

TB HIV Care’s inaugural ‘Red Lace Race’ took place in Khayelitsha on Saturday, 01 December last year to mark World AIDS Day 2018.

The event saw a relatively small turn-out, but ran smoothly (with wonderful support from the City of Cape Town) and great fun was had by all.

TB HIV Care has big plans for the Red Lace Race and the organisation is now working closely with staff, stakeholders and community groups (incl. the Khayelitsha Athletics Club and the City of Cape Town) to plan the Red Lace Race for 2019.

This year’s event will take place on Saturday, 30 November. Watch this space!

Declaration of the Rights of People Affected by TB

On Monday, 13 May 2019, the Stop TB Partnership, together with TB People (a global network of people affected by TB), as well as NGOs and community delegations launched the Declaration of the Rights of People Affected by TB in Geneva, Switzerland.

The launch of this Declaration marks a major milestone in recognising the urgent need to adopt a human rights-based approach to TB, to fund human rights-based interventions that overcome barriers to universal access to TB diagnosis, prevention, treatment, care and support services – and to put people affected by TB at the centre of the TB response.

The Declaration itself aims to empower people affected by TB so they may know and claim their human rights.

The following are principles for a human rights-based approach to TB:

  • People (and affected communities) are placed at the centre, as equal partners, driving health policy, providing the individual and groups with the tools to participate and claim specific rights
  • The most marginalised, at risk and vulnerable people/groups are identified, informed and empowered to access TB prevention, treatment and care
  • Dignity is assured for patients and those affected
  • Socio-economic determinants of TB are addressed
  • Human rights implications of TB policy, legislation and programming are addressed
  • Institutional constraints and capacity gaps that prevent individuals and groups from fulfilling their rights related to TB are overcome
  • There is an integrated and multisectoral response to TB, making human rights an integral dimension in the design, implementation, monitoring and evaluation of TB-related policies and programmes
  • Accountability tools are provided for governments, the international community and civil society to monitor the progress of all stakeholders in realising the right to health
  • A platform is provided for documenting and sharing best practices, supporting advocacy and social mobilisation around human rights relevant to TB.

(Source: www.stoptb.org)  

You can read the full Declaration here.