Putting patients and health workers first in the fast growing world of digital health

After spending the first five years of his life in Bihar, one of India’s poorest states, Vishwajeet Kumar got to travel the world. He kept coming back home every year – and that back and forth was a big part of how he came to see healthcare differently.

“I was at this intersection of two worlds who were not talking to each other,” he says. “West versus East.”

Kumar now works to weave the best of those worlds together. He is critical of the kind of biomedical training he says leaves little room to value the cultural models and social norms in the communities doctors work in.

One example is hypothermia. It was one of the reasons new-born babies were dying when 15 years ago Kumar set up the Community Empowerment Lab in Uttar Pradesh, a state that accounts for a quarter of the country’s neonatal deaths. Yet 16 months after the Lab’s work began in rural Shivgarh, mortality dropped by 54 per cent.

“It is almost 17 times faster [than] if I would have simply looked at a government effort to reduce mortality,” says Kumar. The difference, he says, is simply to start by listening to people, and seeing them as part of the solution.

But as digital technologies take centre stage in healthcare, is low-tech, human-centred care doomed to stay in the periphery ‒ or is it needed more than ever?

Plugged in

Behind the achievements of Kumar’s Lab was the introduction of community health workers who do the listening, and help design solutions with the people they serve.

These workers provide the magic of human interaction. They’re also a bridge between patients and the health system. Healthcare staff “provide a two-way flow of information for those who struggle to reach a facility”, says Hana Rohan, assistant professor in social science at the London School of Hygiene & Tropical Medicine in the UK.

That function often comes with the support of digital tools. One example is Mobile Kunji, an audio app that was rolled out in Bihar in 2012, which helped workers raise awareness about family planning, according to Rohan. “This was a job aid combining a deck of 40 colour-coded cards with illustrations and a supportive audio IVR [interactive voice response] system,” she says.

There’s no shortage of healthcare apps. Over the past 20 years, the field of mobile health (mhealth) has evolved from the simple beginnings of emergency response and telemedicine to data collection tools, and eventually more sophisticated apps now beginning to be used at scale. In May this year, the World Health Assembly passed a resolution on mHealth – a sign of recognition of its power as a healthcare tool.

Bigger, more integrated

Patricia Mechael, co-founder of the non-profit organisation HealthEnabled, explains that health apps have so far been largely disconnected from the healthcare system. But there are signs of a shift, she says, with apps increasingly getting integrated into electronic systems that manage healthcare information, for example, or disease surveillance. “There is a fair amount of activity that’s happening throughout the world to move in this direction.”
Although others see slower moves towards integration, there’s agreement that governments are beginning to take the lead to develop standards, architectures and policies to connect digital health tools and scale up their use.

Part of the appeal is that without integration, countries won’t see the benefit, says Mechael – and that includes the data being captured by digital tools. But data protection policies aren’t developing quite as fast as the technology, raising privacy concerns.

“It is more than a technical issue (of encryption etc.),” says Elaine Baker, a digital health specialist with PATH in Tanzania. “It involves thought being given to exactly which health workers and other data users have access to – which types of data, about which clients, in which circumstances.”

Simpler, more human

Yet, the drive towards ever-more digital systems also raises questions over the human factor in care – how to put the needs of patients and health workers first.

Algorithms will simplify and standardise, but medicine is subjective, says artist and Bellagio resident Asim Waqif – and that makes having a relationship with a doctor even more important at a time when technology puts a vast amount of information on anyone’s fingertips.

“Ultimately even quite complex algorithms still come down to [the] individual skills of the practitioner who’s looking after the patient,” says Ian Lewis, a psychiatrist at Groote Schuur Hospital in Cape Town, South Africa.

How to get the best of both worlds

Mechael says it’s often the simpler tools that are most effective. “A lot of times I think we rush to the new shiny object in the app space, but don’t think enough about even just the ability to communicate via voice through mobile phones,” she says.

For Lewis, using the conventional phone is often more useful than an app to contact patients, especially in a practice like psychiatry where background information from families is important. “The other low technology is just sending text messages to people to remind them to take their medication,” he says, and that’s worked well with drugs for chronic conditions such as hypertension or TB. “The risk with that is obviously confidentiality.”

High-tech solutions are too often the default, says Alexa Koenig, executive director of the Human Rights Center at the University of California, Berkeley School of Law in the United States. But sometimes simple behavioural changes are more effective, and we need to start appreciating the full range of solutions. “When is it more appropriate to go to low-tech solutions, or even no-tech solutions?” she asks.

“The key is to listen to what the problem to be solved is, and then propose a solution that is tailor-made for that problem,” says Veronica Garea, executive director of Fundación INVAP in Argentina. “Maybe it’s not shiny, it’s not flashy, it’s not sexy enough, but it’s what people need.”

There is also a tendency to wipe out conventional methods when innovations come in, according to Cosmas Bunywera, coordinator at Peek Vision in Kitale County, Kenya.

Another problem is that tech designers don’t necessarily factor in cultural differences, says Bunywera. “The reason is that sometimes they are very far away from where the tech will be used.”

Baker believes the separation between health professionals and IT developers exacerbates this. “IT people can design tools that are solutions looking for a problem, rather than really focusing on the health problems and tools which really address them in a sustainable way.”

Back at the Community Empowerment Lab, Kumar echoes the sentiment. “Many at times I feel there are solutions looking for a problem. We’re saying, can we reverse it?”

This article as first published on SciDevNet.