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The chronically ill are those who need online services the most

Jessie Gruman, PhD
Patient
November 14, 2013
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Outsourcing work to cheaper workers is a common strategy of corporations. It has largely escaped the public’s notice, however, that much of this new labor force isn’t located in Southeast Asia, but is rather found here in the U.S. and is virtually free. It is we, using our laptops and smartphones to perform tasks once carried out by knowledgeable salespeople and service representatives.

This was particularly salient to me this week: I spent an hour online browsing, comparing prices, reading customer reviews, and filling out billing and shipping information to get a great deal on a new printer. An airline charges me 99 cents to talk to a person but I can schedule my travel for free online. Calls to Amtrak to make train reservations are routinely answered with a message that I must wait 30 minutes to talk to an agent, but that I can book tickets myself plus get a better deal if I do it online. My bank has a small staff, limited hours and it charges extra for paper checks and mailed hard copy statements, but its website is welcoming and responsive, even at 3:00 on Sunday morning.

Many of us don’t really mind taking on these responsibilities. We are pleased with the convenience of doing these tasks ourselves and are willing to put in the time. We like to look at all the options and choose the best one for ourselves. And we don’t even seem to mind the shared accountability these do-it-yourself approaches impose: When we mess up, it’s our own fault.

But as online applications make it easier to find better, more convenient deals on goods and services, the old way of doing business has become more expensive and less available. Incentives are aligned to make our patronage online the best and, increasingly, the only choice.

There is considerable optimism about the cost-cutting potential of health information technology — electronic health records, secure messaging with clinicians, medication reminders and weight loss programs. Even blood pressure and diabetes monitoring are now designed to capitalize on the efficiency and personalization offered by remote technologies.

But the stream of surveys and studies documenting that some of us, for various reasons, are not using online health applications should give pause to patient advocates, health professionals and health policy makers.

Why?

The migration of services from in-person to electronic comes with the assumption by their sponsors that if we can explore, investigate, compare, communicate and purchase online, we will.

The article “The Digital Divide in Adoption and Use of a Personal Health Record” published in the Archives of Internal Medicine in 2011 suggests otherwise. Cyrus Yamin and his colleagues studied a large population with uniform access to an online personal health record (PHR) through which they could view their medication lists, laboratory results, and appointment information and communicate electronically with their clinicians’ practice. Of 75,056 people, only 43 percent had made any use of this service, and half of those who did logged in once or not at all. Blacks and Hispanics were half as likely to make use of the PHR compared with whites. While overall use by patients of online personal heath records has undoubtedly increased, there are few reasons to believe that patterns of use have changed significantly.

It is easy to be lulled into believing that this lack of Internet use is a temporary problem that will be soon solved by the access afforded by the growing popularity of smartphones. This research suggests that access to the Internet is only one barrier. Many of us who truly need what online health services now offer are often ill or lack literacy, search skills, experience, confidence or cognitive capacity to use the online information and applications upon which we increasingly must depend or face expensive consequences. This problem is growing because today:

Many tools that could help us carry out our own complicated treatments are only available online. Advances in drugs and technology make it possible for us to administer complex treatments ourselves. We now operate in-home devices for infusions, oxygen, drains, dialysis and feeding. We take multiple medications that require constant monitoring and dietary and physical activity modification. We often struggle to do these tasks safely. Increasingly, information, guidance and applications are primarily available online to help us use our devices and organize, track and administer treatments to ourselves and our loved ones and to connect to expert help when our efforts fall short.

Certain comparative information is only available online. Most quality ratings for nursing homes, hospitals and doctors are available only online. Medicare Part D was designed for online use by older Americans (or their kids). It is far easier to compare and find the best deal for individual health insurance policies online than elsewhere. Government health information exchanges – troubled as they are today – will be most efficiently used online. Decision support tools for various treatments are only sporadically available in print and cannot be tailored to one’s specific condition as they can be online.

Interactions about our health care are increasingly conducted online. The drive to increase the meaningful use of personal health records consigns administrative functions such as scheduling and updating or correcting our medical and insurance histories to us, the no-cost workforce.

A combination of incentives and exclusive online availability means that to find appropriate health care and make the most of it; we are required to be proficient with a wide variety of technical skills. This means that a substantial percentage of us must rapidly improve our health literacy, expand our rudimentary knowledge about our bodies and health care, and develop more technological sophistication — while we overthrow a lifetime habit of deferring to our clinicians — to ensure that we are able to benefit from the information and services of modern health care. The consequences of not doing so are expensive in terms of our money, time and health.

Those of us who are unable, unwilling or too ill to respond to these incentives and marketing efforts will lose out.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient blog.

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The chronically ill are those who need online services the most
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