Are We All Ready for Do-It-Yourself Health Care?

Jessie Gruman, PhD

First published 4/06/11 on the Center for Advancing Health blog.

The outsourcing of work by businesses to the cheapest available workers has received a lot of attention in recent years.  It has largely escaped notice, however, that the new labor force isn’t necessarily located in Southeast Asia, but is often found here at home and is virtually free.  It is us, using our laptops and smart phones to perform more and more functions once carried out by knowledgeable salespeople and service reps.

This was particularly salient to me this week: I spent an hour online browsing, comparing prices, reading customer reviews and filling out the required billing and shipping information to get a great deal on a new lamp.  An airline would charge me 99 cents to talk to a person but provides information for free online.  Calls to Amtrak to make train reservations are routinely answered with a message that the wait to talk to an agent is 30 minutes, but that I can book travel myself – plus get better deals – 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 useful, even at 3 a.m.

Many of us don’t really mind taking on these additional responsibilities.  We are pleased with the convenience of doing these tasks ourselves. We like the mastery we gain by looking at all the options and choosing the best one for us.  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: the incentives are aligned to make our patronage online the best and increasingly, the only choice.

There is considerable cyber-optimism about the cost-cutting potential of health applications — electronic health records, secure messaging with clinicians and weight loss programs. Even blood pressure and diabetes monitoring can be designed to capitalize on the efficiency and personalization offered online.

But the stream of surveys and studies documenting just who among us does not – for various reasons – make use of existing online applications for health-related purposes should give pause to patient advocates, health professionals, and health policy makers.

Why?

The migration of service from in-person to online also comes with the assumption by the sponsor 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” in a recent issue of the Archives of Internal Medicine 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 could 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 less.  Blacks and Hispanics were half as likely to make use of the PHR compared with whites.  Interestingly, race / ethnicity was far less strongly associated with intensity of use among all those who did register.

It is easy to be lulled into believing that the lack of Internet use is a temporary problem that will be soon solved by the access afforded by the growing popularity of (Web-enabled) smart phones.  This research suggests that access to the Internet is only one barrier for those of us who lack literacy and search skills, experience, cultural orientation, confidence, or cognitive capacity (because we are ill or frightened or frail) to use the online information and applications upon which we increasingly must depend  – or face expensive consequences.  Because today:

We are responsible for carrying out our own treatments. Advances in drugs and technology make it possible for us to administer complex treatments ourselves.  For example, we return from the hospital quicker but sicker and have become, along with our families, responsible for our drug, dietary, medication and rehabilitation regimens.  We operate in-home medical 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 things competently.  Information, guidance and applications are available online that can help us organize, track and administer treatments to ourselves and our loved ones, and help us know when and who to call for help when our efforts fall short.

Certain information is only available online. Comparative 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 daughters).  It is far easier to compare and find the best deal for individual health insurance policies online than not. 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 work force, just as it has for Amtrak and my bank (some advocates will sigh, “Dream on…” here).  As the Archive article demonstrates, the intuitive appeal to “do it ourselves” is far from universal.

Let’s not kid ourselves.  Just because we go online doesn’t mean we are using that access for meaningful health-related purposes.  Just because important, useful applications exist doesn’t mean we seek or find them. And just because we find them doesn’t mean we act on the information they provide.

But even today, to obtain the full benefit of health information and health care services, we are required to make use of online applications, which in turn means that a substantial percentage of us must rapidly acquire health literacy skills, rudimentary knowledge about our bodies and health care, and some technological sophistication – and that we overthrow a lifetime of habit to transform ourselves from passive to active participants in our care.  The consequences of not doing so are expensive in terms of our money, time and health.

Those who are unable or unwilling to respond to incentives and marketing efforts to actively engage with the health tools and information online are losing.  Again.

Jessie Gruman, PhD, is the founder and president of the Washington, DC based 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 Forum.