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On April 20, the USAID Country Health Information Systems and Data Use (CHISU) Project hosted their webinar titled, “Data Demand in the Digital Age.” Dr. Stephanie Watson-Grant, Deputy Director, CHISU Project, JSI, moderated the webinar with panelists: Tara Nutley, Vice President, Data, Informatics and Analytical Solutions, Palladium; Dr. Manala Makua, Chief Director, Women’s, Maternal and Reproductive Health, South Africa National Department of Health; and Lungi Okoko, Senior Program Officer, Global Health, Bill and Melinda Gates Foundation.
Stephanie prefaced the discussion by introducing the concept of data demand and noted that with respect to health information systems (HIS) or digital health, digital systems and the increased use of globally or regionally recognized standard indicators or benchmarks and the use of electronic platforms are changing the process of demanding and using data and provides an opportunity for redefining and measuring these concepts in a new way.
Any discussion on data demand must include data use. An understanding of the value of data through its use generates more demand for data. Tara lists eight areas of intervention in order to affect data demand:
- Assessing data use context and understanding where intervention needs to take place
- Engaging data producers and users and building a bridge between the two, moving from data production to inquiry, and identifying information needs
- Improving data quality
- Improving data availability
- Building capacities in data use core competencies
- Strengthening an organization’s data demand and use infrastructure
- Monitoring and evaluating
- Communicating the success of investing in data demand and use
Tara notes, “The definition [of data demand] has not changed but what has changed is the context in which we are operating…this improved context is affecting demand.” While in the past data demand was driven by reporting, now it is led by a desire to improve patient care.
Data demand is still driven by donor or reporting needs in many countries that are in various stages of their digital transformation. Any kind of data sharing has implications for privacy and trust. Lungi notes, “Beyond the numbers and the values that are collected and shared, data sets are ultimately a series of transactions based on trust.” Along the data value chain, there is a degree of trust in people’s personal data being kept safe.
The democratization of access to data by the global community can lead to huge power imbalances, with wealthy donors often requesting more and more granular data on more indicators from resource constrained ministries of health. Therefore, there is a need to build trust in the data systems and protect the rights of individuals, communities, authorities, and national authorities. Before sharing data, communities and authorities need to be reassured that the data will be handled ethically and responsibly.
When it comes to a portfolio on sexual and reproductive health, there are connotations for data collection, management, and trust. Manala notes, “When you talk about sexual and reproductive health, often the information that is collected in that space is very sensitive. Sometimes it can lead to some level of stigmatization, one way or another.”
While digitization in data is beneficial, in sexual and reproductive health there is an increasing number of people withdrawing from sharing their personal information. The benefits of data digitization must be balanced with the ethics, confidentiality, professionalism, and avoidance of stigmatization, and communities must be assured that their data will not be shared across the board. Manala reminds us that there is a person and their particularities behind every data point. We should not only focus on digitization but also on how data can save lives.
View the recorded webinar here:
https://www.youtube.com/watch?v=j4ywKDvsCnk
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