A Mandate for Nonprofit Data Interoperability and Portability

What if nonprofits could join healthcare and the private sector in adopting data interoperability and portability (but not without sovereignty… and compensation for clients)?

I remember 10 years ago when nonprofits struggled to understand what a “cloud” was and why they needed to shift away from servers and IT support (if they had any). Ten years before that, we were all hoping Microsoft or Apple or HP would donate computers our agencies. I remember when we all used used fax machines and looked for cheap VOIP solutions to replace donated phone systems. I also remember when we used to hope a local business would donate their phone systems to us. The sector has always lagged far behind others when it comes to technology.

Now, either because technology is so democratized, or because people are noticing how data has been so colonized, we seem to be in a moment where the gaps in the social services world’s understanding of data are large enough that the opportunity costs are actually tremendous, at the same time that risks of end-user (nonprofit clients/program participants) data exploitation is frightening.

While much of the focus right now is rightly on data sovereignty and nonprofit capacity, missing the interoperability and portability wave while it is cresting elsewhere would be a mistake. The repercussions are much bigger than delays shifting from a server to the cloud if nonprofits lag in this area.

Interoperability has been deemed essential in other public sectors. As of 2021, Healthcare systems in the U.S. are required by law to share patient records and can no longer use the excuse that their record systems can’t talk to one another. In the early 2010’s, within one healthcare system umbrella, you could find different hospitals and medical centers using different versions of EPIC, a common healthcare platform, that could not “talk” to each other. Now, with software standards like FHIR (Fast Healthcare Interoperability Resources), doctors can (theoretically and also in practice) share patient records with other doctors in other health systems across the country. The U.S. Congress also mandated that doctors must share patient records with their patients (for free), a step that seems like it should already have been standard, but for decades was not.

FHIR has led to movements within worldwide healthcare systems and advocacy groups to explore the implications of data interoperability to improve patient outcomes around non-medical indicators of health, also known as Social Determinants of Health. Roughly 55% of a person’s health is determined by non-medical factors like employment, housing, access to parks, access to healthy food, income, etc. When people don’t have access to affordable housing, good jobs, and safe and healthy outdoor spaces, they are more likely to live lives with factors that lead stress, depression, obesity, poor air quality exposure, and unhealthy food access. If you add in centuries of structural racism, you can make connections between poverty, race, and health and explain why people living in zip codes 5 miles apart see 15-year differences in average life expectancy. Since 55% of health determinants are addressed by the social service sector and Community Based Organizations, health systems are engaging with CBOs to explore how data interoperability and healthcare/CBO partnerships can move the needle on SDOH (yoy can view examples of this at The Robert Wood Johnson Foundation and the Gravity Project). Based on the number of resources dedicated to healthcare and social services in North America, the resources dedicated to SDOH do not come close to 55%, and the CBOs are driving 0% of the conversation around data interoperability.

Outside of health systems, we all live day-to-day with technology showing us how interoperability and application programming interface (API) work along with portability and a modicum of sovereignty. Want to book a flight through Kayak or Priceline? Airlines share their schedules across APIs so you can see every available flight from every airline. Want access to your budget on a personal budgeting app? It’s right there on your phone and you can take it with you anywhere you go thanks to these examples of portability. You can even look at it offline, enter information, and as soon as you have access to a network, it automatically updates your information.

What would a social service system look like if it incorporated concepts of interoperability and portability, and what if the system decided to respect the data sovereignty of the most vulnerable end user?

Here’s an example based on common experiences of safety net beneficiaries. If a participant/client in the social services system has endured being unhoused and presents with behavioural health and mental health challenges, they have likely spent years moving between healthcare, incarceration, shelters, rapid rehousing, counseling, job training, public benefits programs, clinics, treatment centers, and various programs. At each stop, they encounter paid professionals whose livelihoods depend on government and foundation funding to serve this participant. They each must collect business information and track program interventions as well as outcomes. Between these services, there could be a dozen different data platforms recording information about this end user and scores of funders asking for reports (or else the program will lose funding). From a service provision point of view, this is a costly cluster of infrastructure, and the redundancies lead clients to a range of emotions. Anyone participating in this world has spent time training to de-escalate aggressive behaviors and most will tell you that these escalated aggressions are often the result of the stress of living on the streets, with deep personal histories that led to street involvement, and the feeling of being passed around from case manager to case manager and never feeling heard or respected.

Imagine if instead at each stop on the journey, this participant carried their information with them, either on a phone or in the cloud. They decide who sees it, either all or partially. On their phones or at a kiosk or tablet at entry, they’re asked to access their information and verify what parts they want to share with the new agency. The agency both sees where the person has been and what services and public benefits they’ve receive and automatically gathers what they need without identifiers. Any time the new agency performs and intervention and records it, they must ask the participant permission to approve or upload it (or the participant presses the button themselves). When the person exits the program, they can press a button and take their personal data with them, leaving behind reporting metrics the agency, shelter, or clinic needs. The tools to provide service in this manner exist, as do the proper privacy agreements and safety/security backups, in addition to trusteeship models.

As as side note, once a participant has control of their own data, they should also be compensated whenever they give their information to an entity that gets paid for collecting it, considering the number of people and amount of funding that moves between each entity in the system that collects their data.

The sector won’t get to this place without funders setting the vision and investing in the end goal. This means government, in the same way that congress acted in relation to the 21st Century Cares Act in the United States, should mandate and seed capacity for strategies that will allow the social service sector to overhaul wasteful and outdated systems.