How Digital Outcasts Can Pilot the Future of Health Care

Recognizing the Digital Outcast

In a blog post titled “The New Field of Neurodiversity,” Dr. Thomas Armstrong (2010a) argued that disability was to be embraced as an essential component of the human ecosystem. Dr. Armstrong opines that it is easier to adapt to biological differences between each person once we realize there is no standard brain. Medical research tends to operate from a disease-based approach—that is, searching for a “squeaky wheel” that will prove or disprove the hypothesis. To diagnose someone with dyslexia, for example, we need to clinically assign the social value that reading is important. The potential risk is that we fail to recognize a vast, yet hidden, range of cognitive possibilities that may lurk just under the diagnostic surface (Armstrong 2010b).

We might notice how a bird instinctively builds a nest out of things it finds—sticks, leaves, gum wrappers, and newspaper—because its survival depends upon how well it can adapt to its environment. This behavior, known in biological terms as “niche construction,” is how the bird ensures its survival. We do not judge the bird by the materials or methods it uses to accomplish the task of building a nest. We simply accept the bird’s natural resiliency as part of its instinct.

Access to technology is no longer a conversation centered solely on the topic of capability—in other words, whether a person with a disability is able to use a website or device. Increased emphasis is now being placed on designing for relevance, ensuring that today’s digital landscape remains a viable platform for its most enduring participants. Challenges continue to exist and the impact is felt among adults with disabilities who search online for health-related information. Although overall Internet adoption rates have leveled off, users with disabilities remain active participants in a new cultural model for how we work, shop, learn, and socialize.

Despite our growing potential to augment human capability through technology, however, the innovation curve often leaves behind the very people who could benefit most. This results in diminished access to public services and reduced equivalency in web-based ecosystems (Zickuhr and Aaron 2012). Attrition is sometimes the outcome of our naturally competitive nature, which may explain why digital accessibility remains elusive in today’s business climate. But it could also be simply oversight on the part of a social design that fails to recognize the vitality of today’s expanding disability sector—one that currently encompasses nearly 15 percent of the world’s population (Silberner 2011).

These groups of digital outcasts—people left behind by innovative products and services that make little or no provision for disability—are an emergent culture of active, engaged participants. They straddle each side of the so-called “digital divide” between younger and older audiences. Digital outcasts approach surface gadgetry as a status choice, constantly adapting to new forms of accommodation by personal necessity. The demand of ubiquitous access to technology is as acute to a digital outcast as it is to today’s typical consumer, due to a global social infrastructure that is increasingly reliant on connectivity with one’s like-minded peers. By sheer numbers, users with disabilities should be much more economically powerful, yet they remain marginalized by a technology landscape whose structure is increasingly ephemeral.

The resiliency of digital outcasts foretells a postindustrial era where self-sufficiency translates into sustainability, and where the values of affordance, empathy, and perseverance help users negotiate personal constraints. To improve and sustain their success in life, people with disabilities form a vital component within our modern ecosystem because they are often defined by their necessity to transform and adapt when no other solution is commercially available. With a health care model that is rapidly emphasizing the role of the quantified self with regard to empowerment and accountability, it is the digital outcasts who may be forecasting what the future of self-managed health will become.

Digital outcasts are an increasingly vital element in health innovation today, cultivating a personal incubator where passion and invention reward the entrepreneurial. This is not a new phenomenon, for many of today’s most enduring products had their beginnings as prototypes designed for a relatively small audience segment: the QWERTY keyboard, the public address system, eye- and motion-tracking devices, text chatting software, and brainwave detection sensors are all examples of items created for a specific need. People with disabilities not only represent what we can expect as we grow older and adjust to the inevitable transitions that will affect our minds and bodies but they also foreshadow new ways of communicating and engaging with the world around us.

Examples of Niche Construction

We can see examples of augmented capability emerging every day, whether it be someone retrofitting a video game console or releasing a custom-built mobile app. Digital niche construction operates as a form of bootstrapping, allowing people with disabilities the means to better ensure their survival. The more fully we come to understand the nuances of these behaviors and the impact that disability has on the world around us, the more success we will have in recognizing how products and services for these audiences can benefit all users.

For example, Suzanne Erb is a blind resident of center city Philadelphia, who relies on a cane to move about. But objects at waist height, such as caution tape or ropes separating queue lines at the airport, become dangerous obstructions. “It’s insidious,” she says. “By the time you’ve reached it with your cane, it’s way too late” (Avril 2011). Ms. Erb worked with researchers from the University of Pennsylvania and together they managed to equip a cane with an ultrasonic device that vibrates upon detecting obstructions. The prototype components cost about $40 and fit onto her cane within a small housing unit.

Martin Brooks is another example. For years, he struggled to communicate with his severely disabled five-year-old daughter Mia. Although Mia is cognitively alert, living with cerebral palsy has rendered her unable to speak. Mr. Brooks developed an iPhone app called iComm and designed it to be easily customized for Mia’s needs. The app uses the iPhone’s built-in camera and voice features, essentially operating as an electronic photo album. Today, the full version of iComm is available from the iTunes store, priced at $7.99, and has had thousands of downloads since its 2009 release.

Sometimes, niche construction results in products that expand their market reach. Abelardo Gonzalez, a coding analyst located in the Boston area, discovered that few tools existed to help people with dyslexia make better use of e-book technology. Noting that some dyslexic readers have trouble with letters that appear to rotate on the page, Mr. Gonzalez created a typeface called OpenDyslexic that added extra weight to the bottom of each letter. The font is provided as open source, and in September 2012, the popular bookmarking tool Instapaper announced that OpenDyslexic would be included among its typefaces.

Our vision of the future may well reside in common, everyday objects that we wear. For example, Anirudh Sharma, a researcher with Hewlett–Packard Labs in Bangalore, India, developed a special shoe outfitted with four small vibrators in the front and a LilyPad Arduino microcontroller located in the heel (Tecca 2012). Every turn of the shoe triggers a vibration that helps people with visual disabilities navigate the outside world. Called “Le Chal,” which is Hindi for “take me there,” the prototype uses low-cost components that are readily available and easy to assemble. The sensors even pick up the direction and proximity of obstacles through a built-in global positioning system.

Niche construction will increasingly become a key component of clinical innovation. At the Bloorview Research Institute in Toronto, a breakthrough pediatric rehabilitation-engineering program led by Dr. Tom Chau has generated a number of products designed for people with communication disabilities. Dr. Chau sees his team’s role as more than simply creating gadgets: his mission is to help children engage in life activities. “Pediatric rehabilitation engineering is so important,” he says,

because it is a fundamental human right to be able to communicate and indicate personal preference. We leave no stone unturned. Regardless of their ability to communicate through speech and gestures, we look to see if their body is communicative in some [other] way. (Langille 2012)

Dr. Chau’s design team has helped nearly two-dozen nonverbal children communicate through a device called the Hummer, an external neckband that translates humming sounds into commands that can be read by a computer. By placing the band comfortably around a child’s neck and positioning the plastic sensor just over the larynx, the user is able to select items on a screen simply by emitting a series of soft grunts.

The waiting area at Holland Bloorview Rehabilitation Hospital provides a view to a future where sensor-based, animated objects use light and motion to detect when an emergency has taken place. On one wall is a gigantic screen; the floor is covered with brightly colored squares of carpet. Installed in the carpet are sensors that emit signals to the screen when they are pressed. Lightly stepping on the carpet produces a slight visual effect, and applying firmer pressure results in a kaleidoscope of interesting patterns. Greater effort is rewarded with a visual medley, helping patients and their families pass the time before their appointments.

Smart carpets are not simply for fun, however; they also detect and measure imperfections in gait and transmit data when a fall takes place. Research being done in the area of haptics—computer interfaces activated by touch—has resulted in an array of touch mechanisms for personal emergency response systems (PERS). These PERS devices commonly take the form of a “panic button,” not unlike subscription alarm systems that dispatch a medical professional to a patient’s home in the event of an emergency. However, a number of health advocates have issued a call to action for nursing homes, assisted-living facilities, and senior residences to explore alternatives to the “panic button.” From a purely experiential perspective, the flaw of today’s PERS is that the user still needs to push the button to activate the device—making it of little use to someone who is unconscious and unable to summon help.

The future of PERS is likely to take a different form. We can expect tomorrow’s systems to be more fully integrated into our environments in the form of sensors embedded in furniture and carpets. Someone lying motionless on the floor would not have to request assistance, because the decision point to summon help could be programmed directly onto the surface upon which a person has fallen. We can expect still more sophisticated algorithms to be embedded into our furnishings, enabling them to distinguish between authentic emergencies and false alarms. Such tools will be linked directly to the appropriate first responders: medical services, fire departments, or police.

The Challenge of Standardization

We are already seeing how the use of electroencephalography (EEG) can detect the brain’s electrical impulses to control objects on a computer screen. We are also seeing the increased interest in myoelectric prostheses, electrodes placed directly on the body to capture nerve signals and control virtual limbs (Johnson 2011). It is exciting (and a little scary) to consider that these new forms of interaction may one day populate our homes, vehicles, and clothes, sending data to our physicians’ offices twenty-four hours a day.

Nedra Gillette, director of Research Resources for the American Occupational Therapy Association, once referred to today’s digital health system as “living in a high-tech, low-touch society”—we have the tools necessary to monitor health, but we are still working out how to make them affordable and adaptable for common use. While digital outcasts may be developing innovative ways to help themselves adapt to a changing world, widespread implementation will be a greater challenge.

In December 2012, the U.S. Health IT Policy Committee sought public comment on proposed recommendations for Stage 3 of meaningful use under the Medicare and Medicaid Electronic Health Record Incentive Program. Meaningful use is the term applied to a set of standards defined by the Centers for Medicare & Medicaid Services (CMS), governing the use of electronic health records and allowing eligible providers to earn incentive payments by meeting criteria established by the CMS. The intention is to improve patient health outcomes by increasing the quality, safety, and efficiency through the use of health IT services.

In the future, it is believed, an empowered patient will be a healthier patient. It will also result in healthier practices. Medicare will reimburse compliant physicians up to $44,000 each over five years, with Medicaid subsidizing up to $63,750 over six years. Practices who have adopted electronic health systems and achieved meaningful use benchmarks by October 2014 will avoid a reduction in payments the following year.

The stages of meaningful use employ an incremental scale, helping practices achieve rigorous procedural criteria for storing and exchanging health information. Where early stages were intended to demonstrate that a practice was capable of accommodating electronic health records, later stages dictate that these activities be implemented. For example, there will be increased requirements for e-prescribing and incorporating lab results into diagnostic reports, in addition to computerized order entry for all medication and radiology orders. Practices will be compelled to examine their options for exchanging data with local hospitals—both in and out of network—and record-keeping technologies will need to comply with certifications issued by governing bodies.

The Health Impact of Digital Outcasts

From a futurist standpoint, patient-contributed information will be the crucible of proof. Vendors who had once guaranteed that their systems would meet meaningful use criteria will now be tasked with delivering tangible results. Benchmarks will be set to track key clinical conditions and establish reporting practices that individual devices and large-scale public health initiatives can easily interpret.

Now that 11 to 19 percent of smartphone users have at least one health app on their device (Comstock 2012), significant changes will take place with regard to how we capture and interpret personal health information. We exist on the brink of the “quantified self” where clinical indices can be tracked with a device that fits in a pocket. Emerging technologies, such as wireless sensors and haptic interfaces, will forge new paths in self-care and their methods of implementation (Pfister and Ingargiola 2012). Not only may health care providers have greater success in helping their patients by encouraging the use of these tools—a key step toward achieving meaningful use benchmarks—but they will also need to develop “quantified systems” to replace antiquated paper-based records.

The emphasis on system technology and utilization, however, will be accompanied by an attitudinal shift among tomorrow’s health consumers. According to Jeff Loughlin, project director for the Massachusetts eHealth Collaborative, physicians must be willing to educate patients on the availability of their health data. “The mentality is that patients think medical records are for medical professionals,” says Loughlin (Dolan 2012). There is also the challenge of tying reimbursement to the achievement of good health outcomes, implying that patients in poor compliance may risk being “fired” by their doctors. This will necessitate an “ownership” model in which patients assume greater responsibility for their health successes and failures. Hospital networks will make enormous investments in data technologies to promote trust—not only between doctor and patient but also between practices—to ensure that instructions are accurately conveyed outside the office.

Digital outcasts could have an influential impact by forcing decision support through the use of self-managed tools. The increase in remote monitoring platforms and self-administered data may open the field for homemade devices that optimize and enhance patient-centric experiences. It is not difficult to visualize a future where grassroots innovation could, one day, encourage productive dialogue between health care consumers and the medical professionals who treat them.

Having noted earlier that the human body stops growing between the ages of twenty and twenty-five, current life expectancy trends clearly demonstrate that we have successfully lengthened the distance of natural mortality. However, these same trends remind us that a high proportion of people will require more frequent medical attention, forcing individuals to undergo a process of adaptation to achieve a successful life. How we as a futurist society choose to guide these important transitions will have direct, measurable impacts on global health systems and on our collective quality of life.

For those of us who work in the design and development of technology products, there is much to learn from digital outcasts. We see how their self-sufficiency is turned into sustainability and how genuine need is translated into innovation. We can assimilate the morals of affordance, empathy, adaptability, and perseverance into our own experiences, and appreciate the added value that intellectual curiosity brings to our own product designs. In short, we can create something life-affirming from situations that appear to be disadvantageous.

The digital outcasts of our time—those older citizens who do not always rush to embrace the latest developments in technology, and those whose disabilities may seem to bar them from full membership in today’s high-tech society—represent what we can expect clinically as we age. But at the same time, they also indicate where we can reliably expect innovative new methods of communicating with the world around us to emerge. Chances are that the ubiquitous good health of tomorrow’s global citizens will include greater accountability for one’s own well-being, and that today’s digital outcasts will have helped materially to draw the blueprints of a collective future comprising health literacy, technology, and engagement.