This summer Unicef set the challenge of designing wearable and sensor technology that serves people in resource constrained environments. In the run up to the announcement of the winners on 12th November, we're proud to cover the teams and their prototype wearables, each aiming to make great impact in the fields of health, child abuse prevention, clean water safety and much more.
In the first of our series, we interviewed the team behind Khushi Baby, a wearable platform to bridge the world's immunization gap and a system for tracking vaccination and mobilization.
In terms of tech for good, the potential accessibility of Khushi Baby into hard to reach areas seems its strong point. Was this part of the initial challenge the team set itself?
From our inception, we wanted to make a medical record that was universally accessible, especially in the hardest to reach areas. In order to design for the last mile, we had to physically go to the last mile. In talking with mothers, community health workers, social workers, community leaders, and health officials who functioned in regions that were isolated geographically, politically and culturally, we looked to understand how vaccines get to the last mile and how the data associated with the supply and delivery of immunization is managed.
The paper system used by both the government and NGOs has its problems -- it is prone to errors while recovering and updating patient information, gets outdated by the time it is aggregated and presented to the health official for analysis, and often fails to help the health work ascertain which vaccine is to be given to which child and when.
While other mHealth systems have taken steps to digitize this process, they are still dependent upon a central database and often network connectivity in order to look up a patient ID and the associated health records. What happens when a patient lives in an area with no mobile connectivity or if a mishap leads to the loss of all the data on the central database? Khushi Baby’s system overcomes such technological barriers through its use of an NFC-compatible system that can function offline.
With this system, that data is decentralized and anchored in the community, digitally, with the patients themselves. Luckily, the Khushi Baby necklace costs less than a dollar, is waterproof, customizable, culturally grounded, and battery independent. It makes it easy for patients to hold on to their health data even while moving around. It makes it more likely for them to maintain a connection with the health system since their medical record is transformed into something that is wearable, durable, and culturally meaningful.
The agency the device could give to people in regard to understanding their health issues and responding to them is massive. Is this core to the prototype idea?
Yes, our core is to give patients ownership of their data by integrating them into a network that can engage them with regards to their essential health needs.
While the device itself is an article that stores data, it is embedded in a digital ecosystem that is geared to engage these communities with their health. With data more reliably stored and retrieved, it gives the health provider an opportunity to better inform the patient about their health and motivate appropriate health seeking behaviour. At the same time, it serves as an accountability measure to verify that the health worker indeed did make contact with that patient in the field.
The Khushi Baby necklace is extended by the mobile app which also collects the mother's phone number if provided. This data is relayed to a dashboard that sends out automated reminders and educational calls in the local dialect using pre-recorded messages from the village traditional birth attendant. Even if these mostly illiterate mothers do not own phones, in many cases they have access to phones via some member in their family. Our hypothesis is that phone calls, more so than text messages (which other mHealth systems employ), can increase paternal awareness about maternal and early child care.
While awareness can grow through this connection to a responsive, digital healthcare ecosystem, the Khushi Baby necklace itself may also act as a rallying symbol for health. Locally the black thread is worn to protect the child from evil eye. We believe that the necklace may foster stronger trust between health providers and patients and may even be used as an educational prop to represent the protection afforded by vaccines.
What has been the reaction from medical industry members in the areas the team aims to pilot?
The feedback so far has been strong, positive, and constructive. We have been in the field since March of 2015, working in 96 of the hardest to reach villages in the Udaipur District of Rajasthan. During this time we have had the opportunity to meet and partner with a diversity of stakeholders.
Our first partner NGO, Seva Mandir, operates at the last mile, running outreach camps for antenatal care and child immunizations. Each year they immunize 4000 children with eight health worker teams. Seva Mandir have endorsed Khushi Baby, and is specifically supporting us during this trial phase of testing and evaluation. They see the potential to streamline data collection and build community engagement via vis our system.
Similarly we have received positive feedback from the District government in Udaipur and Rajasthan State Ministry of Health. Government nurses (ANMs) provide a majority of health services through villages throughout rural Rajasthan. Together we envision that the KB necklace can eliminate the upfront paper trail required to enter patients into the State's large electronic health registry by taking digitization to the field.
Public health research institutions have also found keen interest in our endeavors. Organizations such as the International Initiative for Impact Evaluation (3ie), Bill and Melinda Gates Foundation India, Yale University, Indian Institute of Health Management Research University, and Future Health Systems at Johns Hopkins School of Public Health, have contributed funding and other support to help us rigorously measure how much value our system adds.
Public health practitioners are eager to see us take this beyond the last mile in India, where we can scale by including new data points in the medical record or by targeting new populations at need, such as the urban poor or refugee populations. What they really seem to appreciate the most is the potential for this decentralized platform to bridge the data interoperability gap between multiple (disconnected) health providers.
What challenges are presented in terms of keeping citizens medical data attained from the device protected?
These digital chips may be swapped, lost, or in some cases, inappropriately read or overwritten by those with or without intent. We have to consider these scenarios and more when strategizing how to keep the personal, patient data secure.
We are working to ensure appropriate encryption measures are in place so that unauthorized users with an NFC enabled smartphone cannot simply read or alter one's data. Currently, all the chips may be be factory reset or wiped by third party applications. This is not very likely given the low prevalence of NFC-enabled smartphones in the last mile region.
Moreover, only users with the Khushi Baby mobile app and appropriate credentials can read or update the data. Encryption is also built into transfer of the data to our secured cloud database, so that personal medical data is appropriately protected. Protection also means having a backup of the data. For us, there are three locations of the patients data: the KB necklace (most recent and up-to-date), the phone, and on the cloud server. Therefore, if a necklace is lost, patient data can still be to some extent retrieved.
Finally, we are working to ensure there are enough checks for the health provider to confirm that the data corresponds to the patient they are attending to, even in the difficult case of twins. Moving forward we are thinking of clever ways to integrate voice biometrics and GPS based log-ins to add a degree of personalization to verify that the health encounter took place and uniquely with each patient.
What impact do you project the prototype having in five years’ time should it be the Unicef Wearables winner?
Currently, the necklace represents a digital immunization card for children. In the next six months, we are expanding the KB necklace into a digital maternal and child health card, to link child to mother on a larger continuum of care. Moving forward, and with the support of UNICEF Wearables for Good, we plan to build out our software and hardware to store the essential bytes of health information (from allergies, to blood type, to recent biomarker trends), so that patients have a more complete, accessible medical record with them at all times.
To achieve scale, we are partnering with the Rajasthan Ministry of Health to standardize this digital card throughout the thousands of outreach centers in the state and then directly integrate our backend into the already existing state electronic health registry which serves a birth cohort of over one million children each year. The projected time, cost, and value savings from reducing the number of data handoffs and data entry operator staffing requirements could be substantial, not to mention the benefits that would extend from more effective, data-driven immunization programming.
An important part of this growth for us is building an evidence base to rigorously validate the impact of our system. By January 2018, we hope to finish two Cluster Randomized Controlled Trials that will shed important light on: how efficient is our system, how much does it engage the community for immunization adherence, and what is the response from health workers to mothers to health officials.
We don’t want to confine ourselves to vertical expansion and we have a lot of ideas to grow horizontally as well. Taking our lessons learned from the trials, we will look to translate our findings to new regions and populations. We also recognize that our form factor has untapped potential to extend beyond a digital, medical passport. In fact, our larger vision sees the Khushi Baby as a digital key. This key can become a tool to draw those at the fringes of society into a digital network. We see potential for the Khushi Baby necklace to become the key for health records, but also for educational milestones, and an AADHAAR national ID that provides a connection with incentives to bank accounts, social services, and local markets where NFC readers can be installed.
What drives us ultimately is a concern to meaningfully connect with those communities at the last mile. Our vehicle is to tie tradition with affordable, sustainable, and appropriate technology.
"While the device itself is an article that stores data, it is embedded in a digital ecosystem that is geared to engage these communities with their health. With data more reliably stored and retrieved, it gives the health provider an opportunity to better inform the patient about their health and motivate appropriate health seeking behaviour"