I'm in! Towards participatory healthcare of elderly through IOT

(1)

ScienceDirect

Available online at www.sciencedirect.com

Procedia Computer Science 113 (2017) 647–652

10.1016/j.procs.2017.08.325

Peer-review under responsibility of the Conference Program Chairs.

1877-0509

ScienceDirect

www.elsevier.com/locate/procedia

International Workshop in Universal Design for IOT Smart Health (UDISH2017)

I’m in! Towards participatory healthcare of elderly through IOT.

Dimitrios Gkouskos*

a

_{Jonathan Burgos}

b

_,

a_{Malmo University, Malmö, Sweden} b_{Non-Affiliated Researcher, Malmö, Sweden}

Abstract

People today are a capable of living longer, healthier lives than ever before, which results in a growing elderly population. The elderly face issues of reduced physical ability, having to manage multiple health issues over long periods of time, and being digital immigrants. These issues pose unique challenges that often lead to elderly feeling loss of agency due to not being actively involved in managing their own well-being. In this paper, we propose participatory design of IOT technologies to enact universal design in order to better include elderly in managing their health, and thus improving their quality of life.

Peer-review under responsibility of the Conference Program Chairs. Keywords: IOT; Health; Elderly; Universal Design; Participation; Participatory Design 1. Introduction

People today are capable of living longer and healthier lives than previous generations, and the elderly population continues to grow. The term “elderly” traditionally refers to people 65 years of age or older. However, the longevity of elderly persons has made it necessary to distinguish “the elderly” into “the young-old (65-74 years),” “the old-old (75-84 years),” and “the oldest-old (85+ years)”1_{. As a consequence of the increase in elderly population, the}

prevalence of age-associated illnesses and impairments is also increasing. This places a burden on existing healthcare systems to provide quality care to a growing population over longer periods of time. As is often the case, technological advancements are tasked with addressing these issues.

* Corresponding author. Tel.: +46 040-66-57082

E-mail address: dimitrios.gkouskos@mah.se

Available online at www.sciencedirect.com

ScienceDirect

www.elsevier.com/locate/procedia

International Workshop in Universal Design for IOT Smart Health (UDISH2017)

I’m in! Towards participatory healthcare of elderly through IOT.

Dimitrios Gkouskos*

a

_{Jonathan Burgos}

b

_,

a_{Malmo University, Malmö, Sweden} b_{Non-Affiliated Researcher, Malmö, Sweden}

Abstract

People today are a capable of living longer, healthier lives than ever before, which results in a growing elderly population. The elderly face issues of reduced physical ability, having to manage multiple health issues over long periods of time, and being digital immigrants. These issues pose unique challenges that often lead to elderly feeling loss of agency due to not being actively involved in managing their own well-being. In this paper, we propose participatory design of IOT technologies to enact universal design in order to better include elderly in managing their health, and thus improving their quality of life.

Peer-review under responsibility of the Conference Program Chairs. Keywords: IOT; Health; Elderly; Universal Design; Participation; Participatory Design 1. Introduction

People today are capable of living longer and healthier lives than previous generations, and the elderly population continues to grow. The term “elderly” traditionally refers to people 65 years of age or older. However, the longevity of elderly persons has made it necessary to distinguish “the elderly” into “the young-old (65-74 years),” “the old-old (75-84 years),” and “the oldest-old (85+ years)”1_{. As a consequence of the increase in elderly population, the}

prevalence of age-associated illnesses and impairments is also increasing. This places a burden on existing healthcare systems to provide quality care to a growing population over longer periods of time. As is often the case, technological advancements are tasked with addressing these issues.

* Corresponding author. Tel.: +46 040-66-57082

(2)

Technological pervasiveness has spread rapidly over the last decade as more devices are equipped with the ability to share information with other devices. This phenomenon has been referred to as the Internet of Things (IOT). The Society for Participatory Medicine held a workshop on IOT and its role in improving healthcare access. Storni reported that this workshop discussed the need to shift from a traditional healthcare model to a new inclusive model that facilitates continuous care2_{. Since this 2010 workshop, several “smart health” and health IOT devices have been}

(and continue to be) introduced. One theme that is often brought up with respect to IOT solutions is that they will empower and engage the patient insofar as the patient is not confined to a hospital.

When it comes to empowering users, Universal design (UD) is a relevant term. Processes involving UD are based on seven key considerations3_{, which ideally produce an artifact that is universally usable by everyone regardless of}

physical or cognitive limitations. While UD principles can help ensure that IoT devices are usable, these considerations alone cannot guarantee that the device will be readily adopted into the user’s everyday life. And while the UD considerations provide general benchmarks to measure solutions against, clearer direction on how to do UD is needed. Several studies support that user participation can be a way to improve the universal design of artifacts4,5,6_{. Further, IOT can be used as a tool to increase the participation of users}7,8_{. Since IOT technologies are}

relatively new it is worth examining participation facilitated through IOT for the universal design for supporting an aging population. Every individual has a stake in healthy aging as this population includes loved ones today as well as our future selves.

1.1. Aim

This paper aims to outline areas of improvement for health related IOT research by examining existing health IOT solutions from the position of advocating for a participatory approach to elderly health management.

1.2. On Aging

There are numerous problems that the elderly must deal with; however, in this paper we shall limit the scope to just a few. Three key issues that the elderly face are:

1. reduced physical ability

2. need to simultaneously manage several health conditions 3. being digital immigrants

In general, physical strength, flexibility, and fine motor skills decrease as one ages. The word frailty is used to describe the biological condition that results in a reduced ability to complete necessary tasks associated with daily life1_{. The need for assistance to complete everyday tasks (e.g. walking, rising from a seated position, grooming, and}

hygiene) increases with increasing age. However, more focus on healthy aging--among other factors--have resulted in a decline in self-reported disability over time. It is widely accepted that engagement plays a vital role in healthy aging. While the age for self-reported disability is advancing, frailty as a result of age-related degeneration is unavoidable. Treating the elderly prematurely as frail individuals removes some level of independence as well as places strain on healthcare providers. Therefore, facilitating independent living is preferable to both the individual as well as the healthcare system.

Independent living includes the ability to manage one’s own health. According to the World Health Organization’s (WHO) 2015 report on Aging and Health, the majority of health problems the elderly face are due to chronic, non-communicable diseases9_{. In other words, these individuals must adjust their lifestyles to include}

keeping track of ongoing medication regimens. Such revised lifestyles must accommodate any physical limitations as well as possible side effects of these medications. Additionally, juggling complex medication schedules makes it easy for someone to accidentally miss or double dose. Compliance or adherence to prescribed treatment instructions is of utmost importance when managing chronic conditions. When an elderly individual cannot manage these activities on their own, the responsibility then shifts to a caregiver. These comorbidities among elderly, in conjunction to already belonging to a large patient cohort, is making it increasingly difficult for the current healthcare infrastructure to provide a level of care that maintains a high quality of life.

Being digital immigrants is another issue that parallels and reinforces ageist stereotypes that senior citizens are resistant to or incompatible with digital solutions. User studies (see Money et. al10_{) highlight the importance of}

perceived usefulness and perceived ease of use as instrumental factors in adoption of new solutions. Having not grown up in a digital world is another obstacle for today’s elderly, as they must acquire new technical skills in addition to managing other lifestyle factors mentioned previously. Being a digital immigrant is treated as a handicap that must be addressed by designers. Many solutions targeting the elderly place emphasis on passivity. An assumption is made that the elderly are incapable of learning the skills necessary to adequately manage complex devices (e.g. a remote monitoring device). Therefore, health IOT solutions are designed in such a way that the end user is a care provider rather than the patients themselves. Taken together, these three key issues culminate in a general loss of agency for the elderly. As long as the elderly continue to be seen as frail dependents, healthcare is something that happens to them rather than with their participation.

1.3. Unpacking participation

The concept of participation is a complex one, where different disciplines place different meaning and define diverse thresholds into what is considered a “participatory approach”. Given that the focus of this paper is on IOT technology and health, we draw from the sub-fields of participatory design (PD) for interactive technological artifacts, and from the sub-field of participatory healthcare, in order to develop a rounded understanding of the rich meanings within the concept of participation.

In the field of Interaction design, discussions of user participation have been focused on three general areas, as shown in Fig. 1.

(3)

Technological pervasiveness has spread rapidly over the last decade as more devices are equipped with the ability to share information with other devices. This phenomenon has been referred to as the Internet of Things (IOT). The Society for Participatory Medicine held a workshop on IOT and its role in improving healthcare access. Storni reported that this workshop discussed the need to shift from a traditional healthcare model to a new inclusive model that facilitates continuous care2_{. Since this 2010 workshop, several “smart health” and health IOT devices have been}

(and continue to be) introduced. One theme that is often brought up with respect to IOT solutions is that they will empower and engage the patient insofar as the patient is not confined to a hospital.

When it comes to empowering users, Universal design (UD) is a relevant term. Processes involving UD are based on seven key considerations3_{, which ideally produce an artifact that is universally usable by everyone regardless of}

physical or cognitive limitations. While UD principles can help ensure that IoT devices are usable, these considerations alone cannot guarantee that the device will be readily adopted into the user’s everyday life. And while the UD considerations provide general benchmarks to measure solutions against, clearer direction on how to do UD is needed. Several studies support that user participation can be a way to improve the universal design of artifacts4,5,6_{. Further, IOT can be used as a tool to increase the participation of users}7,8_{. Since IOT technologies are}

relatively new it is worth examining participation facilitated through IOT for the universal design for supporting an aging population. Every individual has a stake in healthy aging as this population includes loved ones today as well as our future selves.

1.1. Aim

This paper aims to outline areas of improvement for health related IOT research by examining existing health IOT solutions from the position of advocating for a participatory approach to elderly health management.

1.2. On Aging

There are numerous problems that the elderly must deal with; however, in this paper we shall limit the scope to just a few. Three key issues that the elderly face are:

1. reduced physical ability

2. need to simultaneously manage several health conditions 3. being digital immigrants

In general, physical strength, flexibility, and fine motor skills decrease as one ages. The word frailty is used to describe the biological condition that results in a reduced ability to complete necessary tasks associated with daily life1_{. The need for assistance to complete everyday tasks (e.g. walking, rising from a seated position, grooming, and}

hygiene) increases with increasing age. However, more focus on healthy aging--among other factors--have resulted in a decline in self-reported disability over time. It is widely accepted that engagement plays a vital role in healthy aging. While the age for self-reported disability is advancing, frailty as a result of age-related degeneration is unavoidable. Treating the elderly prematurely as frail individuals removes some level of independence as well as places strain on healthcare providers. Therefore, facilitating independent living is preferable to both the individual as well as the healthcare system.

Independent living includes the ability to manage one’s own health. According to the World Health Organization’s (WHO) 2015 report on Aging and Health, the majority of health problems the elderly face are due to chronic, non-communicable diseases9_{. In other words, these individuals must adjust their lifestyles to include}

keeping track of ongoing medication regimens. Such revised lifestyles must accommodate any physical limitations as well as possible side effects of these medications. Additionally, juggling complex medication schedules makes it easy for someone to accidentally miss or double dose. Compliance or adherence to prescribed treatment instructions is of utmost importance when managing chronic conditions. When an elderly individual cannot manage these activities on their own, the responsibility then shifts to a caregiver. These comorbidities among elderly, in conjunction to already belonging to a large patient cohort, is making it increasingly difficult for the current healthcare infrastructure to provide a level of care that maintains a high quality of life.

Being digital immigrants is another issue that parallels and reinforces ageist stereotypes that senior citizens are resistant to or incompatible with digital solutions. User studies (see Money et. al10_{) highlight the importance of}

perceived usefulness and perceived ease of use as instrumental factors in adoption of new solutions. Having not grown up in a digital world is another obstacle for today’s elderly, as they must acquire new technical skills in addition to managing other lifestyle factors mentioned previously. Being a digital immigrant is treated as a handicap that must be addressed by designers. Many solutions targeting the elderly place emphasis on passivity. An assumption is made that the elderly are incapable of learning the skills necessary to adequately manage complex devices (e.g. a remote monitoring device). Therefore, health IOT solutions are designed in such a way that the end user is a care provider rather than the patients themselves. Taken together, these three key issues culminate in a general loss of agency for the elderly. As long as the elderly continue to be seen as frail dependents, healthcare is something that happens to them rather than with their participation.

1.3. Unpacking participation

The concept of participation is a complex one, where different disciplines place different meaning and define diverse thresholds into what is considered a “participatory approach”. Given that the focus of this paper is on IOT technology and health, we draw from the sub-fields of participatory design (PD) for interactive technological artifacts, and from the sub-field of participatory healthcare, in order to develop a rounded understanding of the rich meanings within the concept of participation.

In the field of Interaction design, discussions of user participation have been focused on three general areas, as shown in Fig. 1.

(4)

As seen in Fig. 1, participation concerns distribution of power between stakeholders, and the way that participation is understood and performed varies depending on cultural aspects such as country of origin, type of context etc. The issue of nature of participation is an important one, and it highlights that there are varying levels of participation depending on the possibilities afforded to user-participants. Finally, good intentions are not enough to enable participation, but appropriate methods that facilitate participation must be used to enable users in voicing opinions and providing impactful data that can shape their healthcare. There is a plethora of PD projects in the realm of design, where users are empowered to have great influence in the end results of the design process12_.

1.3.1. On participatory healthcare

Participatory healthcare is a possible answer to the problem of treating an ever-growing aging population. In a 2010 workshop on participatory healthcare, it was suggested that designing healthcare tools that support lay people in managing their own health is a possibility. However, for this approach to succeed “data should be aggregated, made public, and made freely accessible to users in addition to being anonymous”2_{. Since then, there have been}

many studies reporting on participatory healthcare for the elderly, with a wide variety of levels of participation. A comprehensive review is beyond the scope of this position paper, however we found that for most studies that do not originate from design research, participation is performed through having sensors monitor, and passively collect data on an elderly person (for instance in 13,14,15_).

Comparing this approach to the PD issues outlined in Fig. 1, we can see that there is a mismatch, especially concerning possibility for participants to have independent positions, to partake in decision making and in the availability of methods.

2. Analysis and Discussion

In this section, we examine a sample of modern health advances that relate to IOT and/or participation in terms of how they enable participation, as seen in fig.1. We also discuss participation issues that may provide future directions for participatory elderly health IOT applications. There are several IOT technologies that have a health focus, some emerging through research, and some that already are available for consumers. Here we present a selection of current health related technologies that in some way address user/patient participation. This is by no means an exhaustive review of all available IOT technologies, but rather a summation with the aim of illustrating how participation is dealt with in the IOT health context. Further, not all of the examples explicitly address the elderly population, but many address “patients” as their general target user.

2.1. Consumer health applications

The Proteus digital health (www.proteus.com) is an IOT enabled “digital medicine” service. Proteus is comprised of a small ingestible sensor and a companion wearable sensor patch that monitor data related to “medication adherence” aka, whether the patient is taking medication as prescribed. Proteus offers a companion app for the users to access basic information similar to what is found in fitness trackers such as steps, sleep patterns, heart rate, blood pressure, and weight. The service does share different kinds of information with patients and doctors, with doctors having access to more “high level” information. Availability of relevant information is one of the core elements of a participatory approach, however we see that this service furthers an imbalance of power by excluding patients from having the same access to information as doctors do. One could argue that “high level” information may require specialized knowledge to understand, however not providing this additional information only ensures that the users will be demotivated in taking control of their health.

A different approach is taken by Propeller (propellerhealth.com) where a device is attached to inhalers and logs data of inhaler use for asthma patients. Following the issues outlined in fig.1, the same data is made available to users and caregivers. Equal access to information is a step for empowering users to better understand possible triggers of asthma attacks.

2.2. Experimental Applications

There are some experimental IOT technologies that explicitly target the elderly. One such advance is reported in a study by Amendola et. al14_{. This research team proposes a home solution of RFID tags to “unobtrusively” and}

passively monitor elderly. While the authors mention a participatory approach, there is no example of participation further than the passive involvement of test users in their designs. This proposal is far from actively including the elderly and more akin to treating people as test subjects rather than as autonomous beings.

Another experimental approach is proposed by Pinto et al15_{, where a wearable bracelet is devised as a way to}

passively monitor elderly. Besides an S.O.S panic button on the bracelet, the users have no access to information and no possibilities to actively participate in the design or management of their healthcare.

On a different vein, openAPS (openaps.org) is a grassroots movement started by diabetics. The technology offers the possibility for the user to make their own artificial pancreas system by customizing a compatible medical device. In this approach, all information is made available to anybody that is interested thus equalizing the power disparity between patient and caregiver.

While not specifically IOT, the Technology Adoption Model approach10_{is a step in the right direction in terms of}

meaningful user involvement. The authors base the model on insights from participatory workshops for the design of a custom bathroom solution. The model reconciles perceived use with perceived ease of use, by reporting users enjoying the solution given that they have assistance from experts, but did not see themselves as using the technology independently. Similarly, De Couvreur's Design for (every)one framework16_{of directly involving people}

in designing their own solutions is an exemplary process--though not validated for elderly.

An initial observation from the examples mentioned above is that there is a stark difference between participatory approaches coming from design fields, and participatory approaches originating from health & engineering. In design, participation has been an issue discussed and elaborated on since the 1960s. However, in health it is technical advancements such as IOT that make active user participation possible. One way to promote the active participation of elderly in the design and implementation of their healthcare would be to learn from the field of design and adapt models, concepts and methods relevant to participation for use in a healthcare setting. A discussion must be had on how exactly to compromise designerly ways of knowing with traditions found in health science and engineering, however the potential payoff far overshadows the possible challenges of employing multi-disciplinary teams of designers, engineers, and healthcare professionals.

3. Conclusion

Designing health solutions for elderly is a challenging endeavor. Older generations may often be less comfortable with modern technology due to being digital immigrants, and the combination of deteriorating health and loss of agency pose special requirements when designing solutions for this population. Combining elements of universal and participatory design has the benefit of giving users (or elderly individuals) the opportunity to contribute to the invention of solutions that are more compatible with their daily lives. If the elderly become co-designers, adoption of resultant artifacts will improve, since the perceived use and perceived ease of use are automatically addressed through the design process. IOT provides promising possibilities for actively including elderly users in designing solutions for healthcare and in managing their health over time. If we can find meaningful ways to empower these users, we not only improve their health but help them maintain control of their lives; thus, improving their quality of life.

References

1. Crews DE, Zavotka S. Aging, Disability, and Frailty: Implications for Universal Design. J Physiol Anthropol 2006;25:113–8. doi:10.2114/jpa2.25.113.

2. Storni C. Report on the “reassembling health workshop: exploring the role of the internet of things.” J Particip Med 2010;2:e10.

3. The Center for Universal Design NSU. The principles of universal design 1997.

(5)