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Right-Sizing Health IT: Where’s My App?

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Ever take a mental step back and observe your Web searching strategies? How long do you stay on sites as you are buzzing around? How many times do you click within a site before you give up and move on to the next one? How many apps do you have on your phone that you have only used twice?

Most of us are fast and fickle when we are online. We have short attention spans. We are demanding about what will answer our question or keep our attention. And we are particularly demanding about what will get us to repeatedly return to a Website or app. That is, unless we think the Website or app contains some movie, product, service or information we really want or need, at which point we doggedly stick with it, learning the Website’s eccentricities and tricks, poking at it for hours or days until it produces.

The online migration of health information services and technologies (IT) has been a popular focus for IT investors and developers recently. But we have not been as captivated by their efforts as we have been by those of, oh, Facebook, say. Or Lady Gaga’s fan site. Or eBay. In fact, most of us are reluctant to make use of the thousands of helpful health IT tools launched to get us healthier, take better care of ourselves and make good use of health care.

What’s up with that? What will it take to enable all of us to benefit from advances in health IT at the level we have from IT in other parts of our lives: shopping with price comparisons; investigating the origin of those Easter Island statues; banking online; playing bridge with people all over the world.

In a recent paper on “Designing consumer health IT to enhance usability among different racial and ethnic groups within the United States” published in Health Technology, Rupa Valdez and her colleagues describe why some of us may not make use of health IT: the lack of customization to meet the unique needs of our cultural, racial and ethnic background.  The authors caution designers about the potential to increase disparities in health care and outcomes by developing apps, Websites and portals without attention to our differences.

Valdez and her coauthors describe the importance of taking into account, for example, that our preferences for devices (smart phones, laptops) vary by race; that ideas about privacy and decision making differ among cultural groups; that our ethnic background influences our preferences for the type of health information (if any at all), and the format and language in which it is presented; and that we approach navigation differently.

If IT designers don’t attend to and accommodate our differences, the authors caution, a significant number of us will not use the tools that have been developed to inform and assist us in caring for ourselves, and our health will suffer.

Customizing is wickedly expensive, though, especially because there is scant research and experience to guide designers in determining where, when and how much of it is worth investing in. After all, careful tailoring to the needs of different subgroups doesn’t guarantee their use of an app or Website, it just removes obvious barriers to doing so.

Remember that 500 million people all over the world have figured out how to use the ever-evolving Facebook, transcending language, income, cultural preferences, age and literacy barriers.  And similarly, to the surprise of many (including me), most Medicare beneficiaries have been able, with generous help from their kids, SHIIP volunteers and local agencies, to brave the formidably complicated Medicare.gov Website and sign up for a Part D pharmacy plan.

Maybe there are topics and settings and situations where the unique needs of the potential user should be considered in the design of health IT and others in which an app or site can be put together with the idea that people will just work it out if the rewards (or penalties) are great enough.

The challenge is to figure out which is which.

As a patient and enthusiastic user of a wide range of health IT, I don’t know the answer to the question of “what’s up” with our general low level of interest in making use of the online resources currently available. In my experience, most of the digital tools designed to help us care for ourselves and navigate our care don’t take into account any users’ needs. Rather, they are a product of some designer’s (or funder’s) idea of what the general population should know or should do. Much of our lack of enthusiasm for health IT is due to this mismatch. Valdez and her colleagues make a compelling case that the lack of attention to the ways cultural, ethnic and racial factors influence people’s use of IT also contributes to our disinterest.

Customizing health IT so that we can act to more easily and effectively engage in our health and health care is surely a hefty proposition. The wild cards are changes in the way we use technology and changes in technology itself.  Our feisty, determined resourcefulness in each of us getting what we want and need from our adventures online is an often an overlooked joker in the deck.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


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Health Information Technology   Promote your Health   Inside Healthcare  


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