For our Technology Salon on How Can Partnerships Improve the Digital Health Ecosystem?, we discussed partnerships and interoperability in global health systems. The room housed a wide range of perspectives, from small to large non-governmental organizations to donors and funders to software developers to designers to healthcare professionals to students.
Our lead discussants were:
- Josh Nesbit, CEO at Medic Mobile;
- Jonathan McKay, Global Head of Partnerships and Director of the US Office of Praekelt.org;
- Tiffany Lentz, Managing Director, Office of Social Change Initiatives at ThoughtWorks
We started by hearing from our discussants on why they had decided to tackle issues in the area of health. Reasons were primarily because health systems were excluding people from care and organizations wanted to find a way to make healthcare inclusive. As one discussant put it, “utilitarianism has infected global health. A lack of moral imagination is the top problem we’re facing.”
Other challenges include requests for small scale pilots and customization/ bespoke applications, lack of funding and extensive requirements for grant applications, and a disconnect between what is needed on the ground and what donors want to fund. “The amount of documentation to get a grant is ridiculous, and then the system that is requested to be built is not even the system that needs to be made,” commented one person.
Another challenge is that everyone is under constant pressure to demonstrate that they are being innovative. [Sidenote: I’m reminded of this post from 2010….] “They want things that are not necessarily in the best interest of the project, but that are seen to be innovations. Funders are often dragged along by that,” noted another person.
The conversation most often touched on the unfulfilled potential of having a working ecosystem and a common infrastructure for health data as well as the problems and challenges that will most probably arise when trying to develop these.
“There are so many uncoordinated pilot projects in different districts, all doing different things,” said one person. “Governments are doing what they can, but they don’t have the funds,” added another, “and that’s why there are so many small pilots happening everywhere.” One company noted that it had started developing a platform for SMS but abandoned it in favor of working with an existing platform instead. “Can we create standards and protocols to tie some of this work together?
There isn’t a common infrastructure that we can build on,” was the complaint. “We seem to always start from scratch. I hope donors and organizations get smart about applying pressure in the right areas. We need an infrastructure that allows us to build on it and do the work!” On the other hand, someone warned of the risks of pushing everyone to “jump on a mediocre software or platform just because we are told to by a large agency or donor.”
The benefits of collaboration and partnership are apparent: increased access to important information, more cooperation, less duplication, the ability to build on existing knowledge, and so on. However, though desirable, partnerships and interoperability is not easy to establish.
“Is it too early for meaningful partnerships in mobile health? I was wondering if I could say that…” said one person. “I’m not even sure I’m actually comfortable saying it…. But if you’re providing essential basic services, collecting sensitive medical data from patients, there should be some kind of infrastructure apart from private sector services, shouldn’t there?”
The question is who should own this type of a mediator platform: governments? MNOs?
Beyond this, there are several issues related to control and ownership. Who would own the data? Is there a way to get to a point where the data would be owned by the patients and demonetized? If the common system is run by the private sector, there should be protections surrounding the patients’ sensitive information. Perhaps this should be a government-run system. Should it be open source?
Open source has its own challenges. “Well… yes. We’ve practiced ‘hopensource’,” said one person (to widespread chuckles).
Another explained that the way we’ve designed information systems has held back shifts in health systems. “When we’re comparing notes and how we are designing products, we need to be out ahead of the health systems and financing shifts. We need to focus on people-centered care. We need to gather information about a person over time and place. About the teams who are caring for them.
Many governments we’re working with are powerless and moneyless. But even small organizations can do something. When we show up and treat a government as a systems owner that is responsible to deliver health care to their citizens, then we start to think about them as a partner, and they begin to think about how they could support their health systems.”
One potential model is to design a platform or system such that it can eventually be handed off to a government. This, of course, isn’t a simple idea in execution. Governments can be limited by their internal expertise. The personnel that a government has at the time of the handoff won’t necessarily be there years or months later.
So while the handoff itself may be successful in the short term, there’s no firm guarantee that the system will be continually operational in the future. Additionally, governments may not be equipped with the knowledge to make the best decisions about software systems they purchase.
Governments’ negotiating capacity must be expanded if they are to successfully run an interoperable system. “But if we can bring in a snazzy system that’s already interoperable, it may be more successful,” said one person.
Having a common data infrastructure is crucial. However, we must also spend some time thinking about what the data itself should look like. Can it be standardized? How can we ensure that it is legible to anyone with access to it?
These are only some of the relevant political issues, and at a more material level, one cannot ignore the technical challenges of maintaining a national scale system. For example, “just getting a successful outbound dialing rate is hard!” said one person.
“If you are running servers in Nigeria it just won’t always be up! I think human centered design is important. But there is also a huge problem simply with making these things work at scale. The hardcore technical challenges are real. We can help governments to filter through some of the potential options. Like, can a system demonstrate that it can really operate at massive scale?”
Another person highlighted that “it’s often non-profits who are helping to strengthen the capacity of governments to make better decisions. They don’t have money for large-scale systems and often don’t know how to judge what’s good or to be a strong negotiator. They are really in a bind.”
This is not to mention that “the computers have plastic over them half the time. Electricity, computers, literacy, there are all these issues. And the TelCo infrastructure! We have layers of capacity gaps to address,” said one person.
There are also donors to consider. They may come into a project with unrealistic expectations of what is normal and what can be accomplished. There is a delicate balance to be struck between inspiring the donors to take up the project and managing expectations so that they are not disappointed.” One strategy is to “start hopeful and steadily temper expectations.”
This is true also with other kinds of partnerships.
“Building trust with organizations so that when things do go bad, you can try to manage it is crucial. Often it seems like you don’t want to be too real in the first conversation. I think, ‘if I lay this on them at the start it can be too real and feel overwhelming.…’” Others recommended setting expectations about how everyone together is performing. “It’s more like, ‘together we are going to be looking at this, and we’ll be seeing together how we are going to work and perform together.”
Creating an interoperable data system is costly and time-consuming, oftentimes more so than donors and other stakeholders imagine, but there are real benefits. Any step in the direction of interoperability must deal with challenges like those considered in this discussion. Problems abound. Solutions will be harder to come by, but not impossible.
So, what would practitioners like to see? “I would like to see one country that provides an incredible case study showing what good partnership and collaboration looks like with different partners working at different levels and having a massive impact and improved outcomes. Maybe in Uganda,” said one person.
“I hope we see more of us rally around supporting and helping governments to be the system owners. We could focus on a metric or shared cause – I hope in the near future we have a view into the equity measure and not just the vast numbers. I’d love to see us use health equity as the rallying point,” added another. From a different angle, one person felt that “from a for-profit, we could see it differently. We could take on a country, a clinic or something as our own project. What if we could sponsor a government’s health care system?”
A participant summed the Salon up nicely: “I’d like to make a flip-side comment. I want to express gratitude to all the folks here as discussants. This is one of the most unforgiving and difficult environments to work in. It’ SO difficult. You have to be an organization super hero. We’re among peers and feel it as normal to talk about challenges, but you’re really all contributing so much!”