Consumer Health Informatics Discussion

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Reader Preferences Consumer Health Informatics Challenges As we have outlined above, current and emerging consumer health technologies offer significant promise in helping to improve health. Despite this potential, several substantial challenges remain that must be overcome to realize the full potential of consumer health informatics tools. We will briefly outline a few of the most pressing challenges below. First, although broadband networks and broadband adoption is widespread, it is not universal. Estimates are that approximately 13% of the US population remain digitally unconnected (Anderson & Perrin, 2018). As a result, this percentage of the population is wholly unable to take advantage of the transformational possibilities consumer health informatics has to offer. Perhaps more importantly, factors related to the design of the tools can significantly impact their utilization, and therefore, impact the likelihood of the user experiencing health benefits (Kaplan, 2004; Mansfield, 1987). For example, although technology designers often believe their creations to be culturally neutral, technology-based health tools are often embedded with “hidden cultural assumptions” that may not always be appropriate for all intended users (Valdez, Gibbons, Siegel, Kukafka, & Brennan, 2012). Furthermore, when this occurs across an entire population of users, the benefits may only be realized by some users, and therefore, culturally insensitive technologies can create or exacerbate health gaps between consumer populations (Valdez et al., 2012). The privacy and security of data obtained and transmitted in consumer health informatics ecosystems has been repeatedly shown to be insecure, and the systems easily breached (Lin Goh, 2015). Despite this reality, given the strong consumer demand for emerging health technologies, it is unclear to what extent this reality is impacting consumer attitudes or behaviors concerning consumer health informatics solutions. A detailed discussion about these issues is beyond the scope of this chapter, and this is an area that needs additional research. Some literature suggests that a general lack of endorsement of consumer health informatics technologies by medical and healthcare providers is a significant challenge (Slabodkin, 2016). Interestingly, though, evidence is lacking to support a significant impact of such provider views on consumer attitudes and behaviors. Indeed, a growing number of older physicians and other healthcare providers are embracing consumer health technologies, and younger providers, especially those who are “digital natives,” appear to be much more enthusiastic supporters of these tools and solutions (Deloitte, 2013). Finally, computer and technology literacy are also cited as potential challenges to widespread adoption of consumer health informatics tools, particularly among certain low-literacy consumer subpopulations (Norman & Skinner, 2006). As demonstrated in the examples above, it is likely that in the future, literacy may not have a significant impact on consumer knowledge, attitudes, beliefs, or preferences associated with consumer health informatics tools. This is primarily because technology advances and design enhancements, including miniaturization, ubiquitous network connectivity, voice recognition, cognitive computing, and edge processing will enable consumer health informatics tools to disappear and become passive systems that work automatically. They will require little-to-no active consumer involvement, and over time, the systems will learn to understand consumer attitudes, language, and behaviors better. Summary and Conclusions Consumer health Informatics emerged as a consequence of the rapid advances of computer technology in society, as well as national demographic shifts and pressures on the traditional healthcare system to provide convenient, cost-effective care to all. The early evolution of the field has been dominated by mHealth , wireless , wearable and simple sensor-based applications, devices, and platforms. While some of these technologies have been embraced by the public, we are rapidly approaching a saturation point that represents the largest number of consumer health informatics devices an individual consumer can effectively use at any given time. Fortunately, widespread deployment and adoption of broadband networks, along with miniaturization and edge computing, are enabling robust connections between consumer health technologies and platforms to enable the creation of consumer health ecosystems of support that are built directly into the consumers’ environment and work automatically in the background to support patient needs. To ensure universal benefit from these tools, it will be important to maximize broadband deployment and adoption. It will also be important to enhance the design of emerging systems so that they are maximally usable by all consumers. It is also important to address privacy and security concerns associated with these systems. If these challenges are not addressed adequately, it is likely that the health benefits will be seen among some user populations and not in others. In turn, this could lead to increased gaps or increased health disparities across patient populations. On the other hand, if we seize the opportunities and overcome the challenges, the possibilities for consumer health informatics to improve health and health equity are transformational. For example, smart homes will monitor asthmatic children’s physiologic signs and symptoms at night and automatically administer medications to prevent asthma attacks. Low-cost, wearable wristwatches will help diabetic people monitor their blood glucose levels. Smartphones with enhanced audio features that can easily increase font size will deliver medication reminders for those with limited vision and hearing, and new start-ups will provide home delivery for prescriptions in every neighborhood. We have previously suggested that health IT devices and applications could undergo voluntary certification for cultural, linguistic/literacy, and human factors for use with high-risk individuals and communities of color (Gibbons, 2011). There may also be value in looking beyond strategies that rely on providers or consumers to actively engage or exhibit a given behavior to strategies that work at a higher level. For example, instead Reader Preferences The most powerful technologies are those that weave themselves into the fabric of everyday life until they are indistinguishable from it and disappear (Weiser, 1991). Current consumer health technologies cannot truly make computing a seamless, invisible part of the way people live their lives precisely because they demand our active engagement, consent, and utilization. If these tools continue to demand engagement, at some point, we will reach our individual and collective limits in terms of the number of tools we can efficiently and effectively use at any one time. The future of consumer health informatics will inevitably need to be based on designing tools that are, in fact, passive. In other words, they are invisible, operate automatically in the background, and do not require the user to do anything. Box 2.2 Dinner Time Technology Joan is a 57-year-old, divorced mother of three teenagers who is also diabetic. Joan works as a sales clerk at a local department store and struggles to provide healthy home cooked meals for herself and her children while working full time and keeping up with all their after-school activities. On most days, she drops her children off at school by 7:30 am and travels to the store where she works weekdays from 8 am to 6 pm. She then rushes to pick up her children who are often at three different after school activities, to get home by 7:30 pm. After a long day, at that time of night she is in no mood to spend another hour cooking. In the past, it was a constant battle between eating well but late of eating earlier and eating out. Recently however, the community association made some upgrades to her apartment and home appliances. Now whenever she wants she simply tells Ida what she has a taste for, and in an instant, Ida tells her what she can make in 15 min or less, and which agrees with the diabetic diet her doctor prescribed, with what she already has in her cupboards. To illustrate, consider the fact that at the turn of the century, a typical workshop or factory contained a single engine that drove dozens or hundreds of different machines through a system of shafts and pulleys. The introduction of electrical networks enabled the production of cheap, small, efficient electric motors. These, in turn, opened up the opportunity to give each machine or tool its own source of power. This ultimately led to the ability to put many motors into a single machine. As a result, for example, today’s typical automobiles have at least two dozen or so “motors” that do everything from starting the engine and wiping the windshield to locking and unlocking the doors, etc. Although it may be theoretically possible to know when each of the motors is activated, there is really no point to doing so (Weiser, 1991). They have become invisible, working in the background automatically, with minimal-to-no active consideration by the driver. Indeed, for many drivers, it is inconceivable to think of owning a car in which there are no windshield wipers, power door locks, or where there is a need to physically crank the engine to start the car. Similarly, future consumer health informatics tools stand to be considerably enhanced if designed less as stand-alone solutions and more as ecosystems of connected consumer technologies that optimize consumer health supports. In Boxes 2.1 and 2.2, we provide two examples of future consumer health informatics tools that are developed from this connected ecosystem perspective. In the first example, motion, respiration, and sleep quality sensors deployed in the bedroom detect breathing problems as soon as they begin, and within a fraction of a second, the data is transmitted to a cloud repository where it is combined with data from Suzie’s personal health record, medication history, and pediatrician-visit and school-attendance records to determine a history of asthma treated with an inhaler, or nebulizer treatments of humidified air and nebulized medication. Given the current symptoms and associated data, the house correctly determines that Suzie is having an impending asthma attack, and before she completely wakes up, automatically gives her an equivalent dose of medication as that of her inhaler. Prior to notifying Suzie’s parents, the home verifies that her breathing and sleeping patterns have returned to normal, and the full asthma attack has been prevented. In the second example, Joan relies on Ida, an interactive, voice response-enabled, dietary-assistant avatar built into the display on her smart stove. Ida recognizes voice commands and uses radio-frequency identification and private and proprietary nutritional databases to identify the contents, date of purchase, nutritional content, and the quantity of unused items in her refrigerator and kitchen cupboards. Once done, the system compared available ingredients with millions of online recipes and found one that would fit into her diabetic diet plan that she could easily and quickly make with what she already had available. Although still in the future, companies are actively exploring ways to bring both of these concepts to market. In a simple yet powerful way these examples illustrate the future potential of consumer health informatics that relies on broadband networks and connectivity to create an ecosystem of connected health supports to optimize patient health in a way that fades into the fabric of the lives of the consumer. These consumer health informatics solutions of the future work without imposing additional user tasks or relying on a certain level of consumer computer or health literacy in order for the system to work appropriately. Consumer Health Informatics Challenges As we have outlined above, current and emerging consumer health technologies offer significant promise in helping to improve health. Despite this potential, several substantial challenges remain that must be overcome to realize the full potential of consumer health informatics tools. We will briefly outline a few of the most pressing challenges below. 1.1 1 1 11 11 11 1 19 TO 1. • 11 1 A 1 on n10 Reader Preferences Table 2.1 Key CHI infrastructure concepts • Cognitive Computing— Type of computing that learns through experience, like the human brain • Neural Networks—A system of hardware and/or software patterned after the operation of neurons in the human brain • Deep Learning-Deep learning refers to artificial neural networks that are composed of many layers similar to how nerves are arranged in the human brain • Artificial Intelligence (AI)—The ability of computer systems to imitate intelligent human behavior • Data Mining—Computer processes which enable the analysis of very large data sets to identify patterns and meaning • Internet of Things (IoT)The system of machines and devices connected by broadband networks that do not require human intervention to transfer data and complete tasks • Edge Computing Networked computer processing that occurs at the site data collection on the network instead of relying on a single centralized processing network configuration • Cloud Computing—The practice of using remote, Internet-based servers instead of local servers on a personal hard drive to store, process, and manage information Finally, these computer-based tools, devices, and systems are connected by wireless or wired broadband Internet networks, which enable the bidirectional transfer of data and information. Because the networks can enable a potentially infinite number of connections between afferent and efferent consumer platforms, devices, apps, or other technologies, the broadband network and connected technologies have been referred to as an emerging Internet of Things . Also, as computing power continues to increase to the point where hundreds of thousands, and at times, millions of operations can be performed by computer chips that themselves are continually getting smaller, it enables simple and complex sensing, computational, data transfer, and interventional tasks to be performed in an instant, at any time day or night, for the benefit of any consumer connected to the network. The Future of Consumer Health Informatics While the emergence of new consumer health informatics tools, platforms, devices, and apps is exciting and may ultimately help improve consumer health, a device- or app-driven vision of the field is also limited. How many consumer health apps can anyone use effectively at the same time? How many different wearable devices will consumers be willing or able to wear and interact with each day? As the numbers of devices proliferate, what impact will it have on our interactions with the people and the world round us? If more and more of our time is focused on a screen, display, or dashboard, there will inevitably be less time to interact with the people and environments in which we live. Box 2.1 Healthy Homes that Keep You Healthy Suzie is a 6-year-old girl who has asthma requiring the use of a rescue inhaler approximately once per week. Suzie and her parents recently moved into a new smart care community that was advertised as being optimized for health. A major selling point of the new home was the multiple sensors and health technologies that were built into the home in ways that kept them unseen and working automatically without the need for Suzie or her parents to press a button or otherwise choose to use them. The sensors can detect any number of issues, concerns, and health conditions. Over time, the home will also “learn” the habits and behaviors of family members. When an issue arises, the home will determine what is occurring and correctly initiate a course of action that will appropriately address the issue. One night, after bedtime, Suzie begins to have to work harder to breathe. Before she wakes up, the smart home recognizes that it is an early sign of an impending asthma attack. Suzie’s parents are asleep in the next room and unaware of her changing condition. Before Suzie fully wakes up, the smart home has raised the humidity level in her room and released an appropriate amount of Susie’s nebulized medication, into her room through the heating vents in her room. Suzie begins to breathe the warm, moist, medicated air and her asthma attack is prevented without any human intervention; her parents are unaware of the potential incident until they receive a home alert delivered to their mobile phones detailing what happened. Suzie’s parents quickly run to her room and find her sleeping soundly in her bed. The Future of Consumer Health Informatics While the emergence of new consumer health informatics tools, platforms, devices, and apps is exciting and may ultimately help improve consumer health, a device or app-driven vision of the field is also limited. How many consumer health apps can anyone use effectively at the same time? How many different wearable devices will consumers be willing or able to wear and interact with each day? As the numbers of devices proliferate, what impact will it have on our interactions with the people and the world round us? If more and more of our time is focused on a screen, display, or dashboard, there will inevitably be less time to interact with the people and environments in which we live. Box 2.1 Healthy Homes that Keep You Healthy Suzie is a 6-year-old girl who has asthma requiring the use of a rescue inhaler approximately once per week. Suzie and her parents recently moved into a new smart care community that was advertised as being optimized for health. A major selling point of the new home was the multiple sensors and health technologies that were built into the home in ways that kept them unseen and working automatically without the need for Suzie or her parents to press a button or otherwise choose to use them. The sensors can detect any number of issues, concerns, and health conditions. Over time, the home will also “learn” the habits and behaviors of family members. When an issue arises, the home will determine what is occurring and correctly initiate a course of action that will appropriately address the issue. One night, after bedtime, Suzie begins to have to work harder to breathe. Before she wakes up, the smart home recognizes that it is an early sign of an impending asthma attack. Suzie’s parents are asleep in the next room and unaware of her changing condition. Before Suzie fully wakes up, the smart home has raised the humidity level in her room and released an appropriate amount of Susie’s nebulized medication, into her room through the heating vents in her room. Suzie begins to breathe the warm, moist, medicated air and her asthma attack is prevented without any human intervention; her parents are unaware of the potential incident until they receive a home alert delivered to their mobile phones detailing what happened. Suzie’s parents quickly run to her room and find her sleeping soundly in her bed. The most powerful technologies are those that weave themselves into the fabric of everyday life until they are indistinguishable from it and disappear (Weiser, 1991). Current consumer health technologies cannot truly make computing a seamless, invisible part of the way people live their lives precisely because they demand our active engagement, consent, and utilization. If these tools continue to demand engagement, at some point, we will reach our individual and collective limits in terms of the number of tools we can efficiently and effectively use at any one time. The future of consumer health informatics will inevitably need to be based on…

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