Healthcare: the new data frontier 

With the Big Data market currently valued at $138 billion (USD), the commodification of our data clearly requires greater governance and oversight, and public sector unions are the best placed to ensure this process is correctly implemented and managed. Yet all too often there are barriers in place of this being achieved, whether that is workers feeling they lack expertise in the complicated algorithms that increasingly govern our daily lives, or a failure of employers to include their representatives at the table when procuring this new technology.

In part driven by the Covid-19 pandemic, healthcare is increasingly the new frontier for disruptive digital technology, with over 2,000 billion gigabytes of global health-data currently owned and governed by private corporations. In Nepal, and elsewhere in South Asia, Community Health Workers’ (CHWs) vital role as the link between health services and communities, and as point persons to collect health data from the communities they serve, has led to a growing interest from the tech industry into their work. This puts them at risk of digital tools that aim at transforming this wealth of data into digital data and digital intelligence at the cost of their labour rights, individual rights, and of breaching the trust communities have put in them.

Two CHW unions affiliated to PSI in Nepal to develop their capacity to face this growing challenge. Twenty participants joined, all women, joined a full day meeting on 28 November 2021. The first session was an interactive introduction to what digitalisation is and why it matters for CHWs, the second session was workshop about the implications of digitalization for public services workers, and the afternoon session focused on what CHWs can do together to address the issue.

Digital tools eroding rights and trust

A key point of discussion was around the erosion of labour rights brought about by pilot initiatives to introduce digital tools to the work undertaken by CHWs in both Nepal and India. Participants felt there was an irony in this situation, as these tools were expected to facilitate and improve their work, yet their labour and individual rights, including privacy rights, were not considered in the implementation process. A union representative spoke of their experience fighting against the firing of members that did not learn using the new tools fast enough and winning this struggle.

Another key issue was about the trust that communities put in CHWs when they provide their data to them in the name of the national health system, and the risks linked to the digital tools being developed by private companies that do not have the same accountability to the communities. CHWs felt strongly about the breach of trust that this could imply and expressed the need to regulate gathering and using such data, even if anonymized and aggregated.

Finally, the group discussed how digitalisation can also be a tool to strengthen both unions and quality public services. It was noted that when CHWs in India mobilized against the controversial application that was pushed on them, they used digital tools such as WhatsApp and Google Meet. Similarly, the government of Kerala developed software system with public interest groups to integrate the data of different health departments and facilities to strengthen its Covid-19 response, under public accountability. The CoronaSafe software has been awarded as Digital Public Good by the United Nations.

PSI’s Our Digital Future Project

This session was a first test for PSI’s new training program on digitalization. In 2021, PSI initiated a three-year project co-organised with the Friedrich Ebert Stiftung (FES) and Why Not Lab, focused on formulating a trade union response to the digitalization of public services. Our Digital Future aims to equip union leaders, members, and activists with the skills necessary to shape digital transformation in the public interest.

The first stage in Our Digital Future has been to train Digital Rights Organisers (DROs): rank and file union members with an interest in digitalisation and a willingness to take the agenda further within their union and country. Over three training sessions and several check-ins, DROs have been introduced to a variety of tools and strategies that they can begin to use within their workplaces. Nepal’s Digital Rights Organiser, Rabindra Khadka, with the support of PSI staff, took the lead to organise the training session for CHWs in a first instance of teaching-forward under the project.