Home Healthcare, Hospice, and Information Technology Innovations Conference

Innovations in Home Healthcare, Hospice, and Information Technology

A forum towards achieving evidence-based diffusion and implementation of innovations

Fri, Nov 3, 2017

Friday, Nov 3, 2017, Washington - D.C.

H3IT: Home Healthcare, Hospice, and Information Technology Conference Chicago, IL, 2016

Accessibility and Beyond: Designing Consumer

Health IT for Individuals with Disabilities

Rupa S. Valdez, PhD

(rsv9d@virginia.edu), Melissa R. Lemke, MS

(lemkemr@humanabilitydesigns.com), Geoﬀrey R. Smith,

II, MD

(gs4gd@virginia.edu), Claire A. Wellbeloved-Stone, MPH

(caw7fd@virginia.edu)

s health care shifts to home- and community-based settings

1,2

the roles of both providers and patients are trans-

forming.

3,4

There has been an increasing focus on consumer health IT (CHIT) (i.e., electronic technology used

by laypeople to support health and health care management) to address this shift in health care.

5–7

People

living with physical, cognitive, and/or sensory disabilities face challenges engaging in CHIT and have not been

a demographic focus of developers.

8–10

Approximately one-ﬁfth of the non-institutionalized U.S. population self-identiﬁes as

disabled.

With such a large portion of the population identifying as disabled it will be necessary to develop CHIT with this

demographic in mind. This study aims to assess the needs of individuals with disabilities for CHIT focused on one technology

platform (mHealth) and one self-management task (health information communication with social network members). This

will be accomplished through a multi-method study that explicates individuals with disabilities’ existing health information

communication practices and the accessibility, usability, and usefulness of three existing mHealth solutions incorporating

health information communication functionalities.

Methods: There are three phases in this two-year longitudinal study: (1) interview-based exploration of existing health

information communication practices, (2) task analysis and journal-based exploration of challenges to using existing con-

sumer health IT incorporating health information communication functionalities, and (3) design session-based exploration of

potential design solutions. The study will involve 60 participants living with physical (n=20), sensory (n=20), and cognitive

(n=20) disabilities. In Phase 1 participants are involved in a semi-structured interview about their personal network and

health information sharing—including use of CHIT for health information communication. In Phase 2 participants interact

with three existing mHealth apps focused on health information communication on either an iPad or iPhone: (1) Microsoft

HealthVault (non-tethered PHR), (2) Epic’s MyChart (tethered PHR), and (3) CaringBridge (social support). In Phase 3

participants attend group design sessions to discuss mHealth app design focused on health information communication as

well as access ibility challenges of mHealth apps and how to overcome them in future design.

Results: To date we have screened 29 individuals, interviewed XX, and conducted task analysis with 4. Initial analysis of

interviews has shown that most participants rarely use CHIT to communicate health information. Instead, they mainly use

the telephone or communicate in person. Their networks tend to be small (range: n=3-47, mean: n=11, median: n=8).

Many participants are not opposed to using CHIT, but have never learned how or do not have access. The pilot data from

Phase 2 led to initial ﬁndings about the usability and accessibility of the three mHealth apps. HealthVault and MyChart do

not have iPad versions. It is not possible to click the sign up button in HealthVault on the iPad, making it non-functional on

the iPad. Additionally, there are limitations with the voiceover function’s interface with the apps. For example, the terms

and conditions text was not read out on the CaringBridge app, there was no voiceover indication when a pop-up appeared,

and it was diﬃcult for the user to tell what she had entered into the email text ﬁeld. By the symposium we will have a more

robust dataset and more results to present.

Discussion: The initial results show that there are still large gaps between CHIT developers and the needs of individuals

with physical, cognitive, and/or sensory disabilities. After collecting and analyzing data from all 60 participants we will

develop guidelines for app development that address this population’s needs. Simple modiﬁcations, such as ensuring that alt

text is available for photos and that the screen ﬂips orientation to landscape, could reduce user burden. A limitation of the

study is that the design guidance to be generated is anchored in one technology platform and three speciﬁc mHealth apps.

Conclusion: Engaging with people living with physical, cognitive, and/or sensory disabilities will allow us insight into user

needs and preferences for CHIT. Through mixed methods we hope to use existing mHealth apps to inform design guidance

and increase the accessibility and usability of future mHealth apps as health care shifts to home- and community-based

settings.

Acknowledgments: This research is supported by the Agency for Healthcare Research and Quality (AHRQ) under award

number 1 R21 HS023849-01. The content is solely the responsibility of the authors and does not necessarily represent the

oﬃcial views of AHRQ.

University of Virginia, Charlottesville, VA

Human Ability Designs, Canton, MI

H3IT: Home Healthcare, Hospice, and Information Technology Conference Chicago, IL, 2016

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