This story is part of a series highlighting the work of Equity Initiative (EI) Fellows during the Community Building phase of the Equity Initiative program- a lifelong commitment to advancing health equity across Southeast Asia and China. Through CMB Foundation/EI grants like the Community Building Fund, Fellows lead innovative, locally grounded solutions that address pressing social and health challenges. 

Dotted along the Thai-Burma border, ethnic communities gather, fleeing conflict and economic hardship. Cut off from and distrustful of formal health infrastructure, these communities have long relied on their own networks of health workers and clinics to manage illness and crises. Who is sick, with what, where, and how many is what health data means here: a record of survival. 

However, collecting that data and sharing it are two very different things. Without a shared picture of disease patterns, resource gaps, and service coverage across ethnic areas, communities cannot advocate effectively for what they need, and the organizations trying to support them cannot respond. "Data is quite valuable for them, and ethnic partners generally do not share," says CMB/EI Fellow Sharon Low (2018, Singapore). "So it's very hard to have an overview of what is happening in conflict or ethnic control areas." 

Discussion happening between those residing near the Thai-Burma border

This is the environment in which the Health Information Systems Working Group (HISWG) has long tried to operate: a coalition of ethnic health organizations (EHOs) and community-based health organizations (CBHOs) along the Thai-Burma border, working to standardize health data collection so that information about disease, mortality, and health services can be compared, used for advocacy, and turned into decisions that actually reach communities. For decades, it held together a fragile but functioning web of coordination. Then, as institutional funding shifted after the 2021 military coup, organizations that had once worked under a shared umbrella began going their separate ways. "Some of them lost focus on coming together as ethnic HIS groups because they started having different agendas and different funding partners from inside Myanmar," Sharon notes. "The whole idea of this project is to bring them together again." 

That project is a Community Building Fund initiative, and its mandate is to rebuild that fractured network. Working through The Knowledge House, the UK-based nonprofit Sharon co-founded, and alongside longstanding border-area partners the Burma Medical Association (BMA), Mae Tao Clinic (MTC), and the Back Pack Health Worker Team (BPHWT), Sharon set out to do three things: redesign HISWG's operational model to reflect current realities; build genuine ownership among EHOs and CBHOs; and restore trust at every level, from community health workers to international donors. CMB/EI Senior Fellow May Sripatanaskul (2018, Thailand), CEO of design consultancy LUKKID, brought human-centered design facilitation to the process. She helped partners work through not just what the network should do, but how it should function together. 

One of the first concrete milestones was a 25-day Introduction to Disease Surveillance and Data Management Training, co-funded by five donors including the Equity Initiative. 41 participants (including field HIS staff, M&E officers, supervisors, and data managers from BMA, MTC, and BPHWT) completed the training, with participants demonstrating meaningful gains in knowledge across disease surveillance and data management. The project also established a dedicated HIS coordinator and a satellite field HIS unit, and extended collaboration to the Karenni and Shan EHOs, including a newly forged connection with the Shan group based in Chiang Rai. 

An area near the Thai-Burma border

By March 2025, what began as an effort to stop the fracturing had become something quietly remarkable. The network had grown well beyond its original footprint, with partner organizations now running their own trainings and mentoring their own staff. This model helps with the high turnover that conflict and under-resourcing can create. A shared data manual had been finalized, and a region-wide health survey was underway. Tellingly, international research institutions were now coming to HISWG rather than the other way around, with a cross-border study on TB and vaccination in the pipeline that would have been out of reach when this project began. 

A deeper structural challenge has been the absence of clear agreements governing how data moves between organizations. Working with pro-bono lawyers, the team developed MoU templates addressing not just technical protocols but the fundamental questions of ownership, access, and use: who controls the data and what it can be used for. "The first step is to reduce the number of papers before you talk about digitalization," Sharon noted. "Otherwise, the health workers will be overwhelmed, especially with the workload." 

Ethnic communities along the Thai-Burma border continue to face the compounding pressures of conflict, displacement, and fragmented health systems. But the trajectory of Sharon's work with HISWG demonstrates that rebuilding coordination is possible. Data handled with care and governed by trust, can become a foundation for collective action rather than a source of division. 

Call to action: To learn more about the Equity Initiative and how you can become part of this community, see here.