Last month, the WHO Digital Health Technical Advisory Group convened for the first time in Geneva to discuss and devise a roadmap for the adoption and scaling of digital technologies to meet the world’s health needs. The resolution underpinning the formation of the advisory group and the WHO’s newly established Digital Health and Innovation Department specifically urged member states to assess how an increased deployment and utilization of digital healthcare technologies could promote “equitable, affordable and universal access to health for all, including the special needs of groups that are vulnerable in the context of digital health”. In light of this recent development, we take a look at the shortfalls and successes of digital health inclusivity to date.
In theory, digital health advancements should benefit all of us, but even more so those who are hardest to reach. Unsurprisingly, however, the benefits of digital advancements are not equally distributed, and instead, often serve to further marginalize those already most vulnerable in our societies in a technological sense. It seems counterintuitive that technological innovations should have such unintended consequences when their original intention is to improve the quality of care, facilitate access to and speed of assistance. So the question arises: How can we prevent health interventions from failing and accentuating health disparities?
Access, design and context matter
Simply put, blanket ‘out of the box’ interventions are not going to work for vulnerable or underserved populations. Without a contextual understanding of vulnerability, how it operates, influences people's needs and determines barriers to access, any intervention is doomed to fail.
Despite significant advancements in internet penetration globally, the digital divide remains a stark reality both within and across countries. A study conducted by Microsoft highlights that internet poverty in the United States is much more prevalent than the Federal Communications Commission’s (F.C.C.) estimates would suggest. Globally, the majority of people access the internet with a mobile phone (as opposed to via a computer); yet 4G and 5G networks are accessible to only those with the latest and most expensive smartphones. Many people across low or high -income countries, however, cannot afford smartphones and/or connected wearables that would allow them to gather continuous data to share with their doctor to avail of more personalized healthcare plans. While a person may have access to technology, he or she may not be sufficiently literate or lack the digital skills necessary to use the technology, and consequently cannot access educational health content online. Lower socioeconomic status is often associated with lower literacy and reduced digital skills. Financial reasons, functional and cognitive impairments for instance limit smartphone usage in older homeless adults. Trust and confidence also influence the up-take of technology in underserved populations, as technologies can be perceived as invasive or too tightly linked with social services or governments.
Oftentimes devices or technologies, by their very design, are simply not accessible to everyone. For instance, a study conducted by researchers at the University of Washington found that many mHealth apps were not sufficiently accessible to people with vision impairments. Language is also a significant barrier in accessing healthcare services for many non-native speakers. Besides ensuring that the technology and the user can draw on the same language, it is fundamentally important that vernacular and cultural nuances are sufficiently incorporated to ensure comprehensive communication with consumers. Linguistic exclusion also occurs at a more basic level, that of evidence generation about the health of vulnerable populations. Participation in the Apple Heart Study, for instance, was open only to those “proficient in written and spoken English” (albeit defined by self-report) and with access to an iPhone (5s or later) or Apple Watch. Beyond linguistic biases, ethnic minorities are also notoriously underrepresented in clinical trials.
All of this leads us to question who digital technologies are designed for, if not for those most in need of improved service delivery. In their 2013 publication, Chris Showell and Paul Turner rightly question whether eHealth systems are in fact designed for “People Like Us” (PLUs) by “People Like Us”, that is privileged, literate, tech-savvy and motivated individuals.
Designing for inclusion: overcoming the PLU hurdle
One way of overcoming the PLU hurdle is to adhere to inclusive design principles. Microsoft’s Inclusive Design Methodology is a great example of how a change in perspective can fundamentally alter the meaning of user-centric designs. The company’s methodology centers around the following three principles:
1. Recognize exclusion;
2. Solve for one, extend to many, and
3. Learn from Diversity.
Many companies are evidently developing their solutions with such principles in mind:
Washington, D.C. based Babyscripts aims to improve pregnancy care coordination, particularly for underserved women and high-risk pregnancies. Cognizant of “the differences both in the depth of technology and the level of connectivity”, Babyscripts’ CEO Anish Sebastian describes his company’s inclusive approach to service delivery as one wich, where warranted, defaults to simple text-based messaging and phone calls for which there is a high guarantee of delivery. Where women don’t have access to a connected blood pressure monitor and weighing scale, Babyscripts includes these devices in the Mommy Kit they send to mothers enrolled in their program.
Senior adults are less likely to download apps or access telehealth services through smartphone apps; yet they are a cohort for which telemedicine has great potential as it enables regular and consistent follow-up care. Within this context, American Well and Cisco recently announced a partnership aimed at developing technology which could see the delivery of home care via people’s home television sets. This partnership is even more significant in light of the announcement made earlier this year that in the US Medicare Advantage insurers will be reimbursed for additional telehealth services in 2020.
Butterfly Networks have developed a hand-held portable ultrasound imaging device with enormous diagnostic potential. The device connects to iPhones and can be used by doctors as a single point full body ultrasound in remote and deprived settings. Backed by the Bill & Melinda Gates Foundation, Butterfly Networks uses microchips rather than piezoelectric crystals which allows the company to sell its device for less than $2000 (compared to other leading portable ultrasounds which cost in the region of $7000).
The growth in popularity of mental health chatbots has much to do with the fact that they lower inhibitions, allow people to talk freely, and are also more affordable than in-person therapy sessions. Most importantly, however, mental health chatbots are always available, especially in a time of need and irrespective of location. San Francisco based X2AI has developed Karim, an AI chatbot that can be used by refugees in camps where access to mental health services is especially scant. Users don’t have to download an app to talk to Karim, the bot converses over text or instant message. Different versions of the company’s flagship chatbot “Tess” have also been developed for the elderly and new mothers with postpartum depression in Kenya.
Cognizant of the fact that many people are denied healthcare access on the basis of affordability, Doc.com combines blockchain-based cryptocurrency and telemedicine consultations in a novel way to provide increased access to healthcare services. To date, the company has provided telemed services to over 250K consumers. Services are free in exchange for third party access to the anonymized data generated from consultations. This data is shared with research, clinical and pharma companies to aid in augmenting and understanding future healthcare interventions.
In partnership with the Ministry of Health in Rwanda, Babyl (the Rwandan equivalent of Babylon) offers its users many different ways to access its services free of charge. Those who have smartphones can download the app and check their symptoms with an AI chatbot. In remote and rural towns, booths have been established equipped with tablets that people can use to receive medical consultations. Dialing *811# connects users with a triage nurse, who will subsequently schedule an appointment if a condition is deemed treatable.
The bottom line
Innovative and inclusive solutions are being developed by defaulting to simpler but more wide-reaching tech features. Best practice accessibility guidelines have been developed and their adoption will be key to delivering more inclusive digital experiences. The only real way that we can ensure digital health inclusion is by co-designing solutions together with intended users. The moral obligation does not stop at creating inclusive designs however. Even the seemingly most inclusive technologies, while free and accessible to all, can be questionable, especially when access to services is traded for personal information. Truly inclusive solutions are those that equalize the terms of engagement, seek no harm, and are fully transparent and clear about their terms of service. But beyond that, we need digital health solutions to be economically viable, accessible to those who need improved access most and prove the efficacy of their improved health outcomes.
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