A dramatic increase in the public's use of digital technologies theoretically should provide new audiences for those who develop, test, fund, and implement applications to help people with chronic conditions care for themselves more effectively. However, to date, such technologies—for example, telemedicine, virtual visits, home health monitors, social networks, digital pill bottles, patient/clinician communities—have attracted scant interest from the public and yielded few if any sustainable improvements in health and functioning. It may be too soon to expect big changes: People are still learning where and how these technologies fit into their lives, and the technologies themselves are changing rapidly.
As a person with a number of chronic conditions, I offer four observations that might help health information technology (HIT) funders, developers, and evaluators understand some of the challenges patients face every day in finding good care and making the most of it—challenges that could be significantly reduced by effective HIT.
Observation #1: The current chaotic state of healthcare delivery deeply affects those of us who use health care frequently. My four different cancer diagnoses—and the responsibilities that come with that many diagnoses and that much treatment—have shown me how advances in health care simultaneously promise better outcomes while demanding more from patients.
I have seen the responsibilities of patients and caregivers change dramatically over time. Some of the new duties that we must now perform result from innovations such as those in surgical care that enable people to leave the hospital quicker but sicker.
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Others result from the drive to improve efficiency by achieving better clinical outcomes while minimizing the demands on professionals.
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Use of electronic health records in U.S. hospitals.
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New duties arise from a fragmented health system that has yet to develop the capacity to support care coordination.
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Collaborative management to achieve treatment guidelines Impact on depression in primary care.
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Still others have developed as health care shifts from an authoritative style toward one based on the premise that we do better when we have a say in our own care.
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Effect of adherence to home spirometry on bronchiolitis obliterans and graft survival after lung transplantation.
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Vancomycin and home health care.
What are these new responsibilities? Consider: following surgery, people find themselves attending to drug, wound-healing, dietary, and rehabilitation recommendations on their own.
Postoperative pain management discharge teaching in a rural population.
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To benefit from new drugs and devices, those with chronic conditions must often implement complex drug and lifestyle recommendations, such as those associated with diabetes, asthma, and HIV/AIDS.
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National Ambulatory Medical Care Survey: 2006 summary.
How often do Americans see doctors?.
The widening variety in care providers, tests, and treatments means not only that more and frequent consequential choices about care must be made, but also that information and services must be coordinated among providers for both the patients and their loved ones.
Projection of chronic illness prevalence and cost inflation.
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Use of medical care for chronic conditions.
U.S. Census Bureau, 2008
Education attainment in the U.S.: 2008 [database on the Internet].
Clearly, the active, knowledgeable participation in our care is necessary if we are to benefit from the available services, advice, drugs, and procedures. The aim of developers and testers of new applications should be to streamline some of the routine tasks of caring for ourselves so that even though we must take the drugs, follow the diet, go to appointments, get the treatments, minimize the side effects, and coordinate the test results among the various clinicians, we can still live lives that are rich in possibility and meaning.
Observation #2: The technology with the greatest potential to help people with multiple chronic conditions is the widespread implementation of interoperable electronic health records (EHRs). The potential cost savings to providers and plans of an interoperable EHR have been well documented, leading to the American Recovery and Reinvestment Act–supported initiatives of the Office of the National Coordinator for Health Information Technology to adopt HIT incentives and to make the requirements for the meaningful use of EHRs a high priority.
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Office of the National Coordinator for Health Information Technology
Health Information Technology.
However, little attention has been paid to the burden and the risks that the lack of an interoperable EHR places on people who are the most frequent users of healthcare services.
Those of us with multiple chronic conditions may consult many physicians in the course of a year.
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Multiple chronic conditions: prevalence, health consequences, and implications for quality, care management, and costs.
Last year, I saw 11. Not one of my doctors has ever communicated directly with another, despite the fact that some of them work in the same health system and have offices in the same building. I am the sole arbiter of who gets what information in what format and when.
The personal EHRs currently available are time-consuming to populate
Lack of EMR data means continued consumer PHR apathy.
; my physicians are neither able nor willing to look at one.
Can technology cure health care?.
I coordinate all my health information because I believe that my life depends on it. But many of us do not realize that our personal information is not available to all the doctors or we do not know how to make it so: We lack the skills and knowledge to gather the information and make the judgment calls.
2008 Update on consumers' views of patient safety and quality information.
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What happens to us?
The leisurely uptake in EHRs by primary care practitioners does not reflect the urgency of our need.
Digital divide plagues slow e-health records rollout: EHRs can sometimes be the difference between life and death.
A faster pace of adoption of interoperable EHRs would relieve us of responsibilities that, by default, most of us now have, that put us at risk, and that many of us are not adequately prepared to fulfill.
Observation #3: We—our voices and our experiences—rarely play a meaningful role in the development and testing of new applications. Most of us with chronic conditions now show only modest interest in making use of the websites, apps, and devices available to help us perform routine tasks of caring for ourselves. This is puzzling, since Americans tend to like gadgets and timesaving devices that make life easier.
Mobile access 2010.
An analysis of the success of four popular non-health-related decision aids used to inform the development of health-related strategies found that people are more likely to use a decision aid “when they have a clear and compelling need for external support or information in making a choice.”
Center for Advancing Health
Getting tools used: lessons for health care from successful consumer tools.
These findings were echoed by patient advocate Amy Tenderich of DiabetesMine (www.DiabetesMine.com
We will use tools that answer our questions and solve our problems. We will avoid tools that help us do what you think we should do and we won't use tools that add to the work of caring for ourselves.
Reviewing health tools: a community matter.
Some approaches—personalized reminders, e-mail with physicians or from a care team member—have been readily accepted,
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The Health Care Blog
Survey on PHRs: interesting data, wrong emphasis.
demonstrating that there is little resistance to use of HIT as a routine part of self-care when the approach meets these criteria.
Chronic disease battle requires better tools.
The inclusion of potential consumers at every step in bringing new products and services to market is routine in other sectors of our society. A plan to do so should be required by funders, and the opportunity to do so should be embraced by developers and evaluators of new applications.
Observation #4: Those of us with chronic conditions are a rich and varied group, and evaluations of the barriers we face in using consumer HIT applications do not consistently reflect the challenges we encounter. A recent systematic review of consumer HIT described two deficits in the development of new applications.
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Impact of consumer health informatics applications.
First, the list of individual-level barriers to adoption of consumer HIT is long, but those barriers are sporadically measured, making it difficult both to understand of their relative importance and to collect evidence on how they have been effectively addressed. Second, consumer health informatics are not being tested among those of us who need them most—older nonwhite adults with multiple chronic conditions.
A new consensus about standard approaches to studying barriers to the use of consumer HIT should draw heavily on the experience of a range of potential users, with particular attention to those of us who could benefit most from new technologies to help us care for ourselves. The widespread adoption of such a standard—supported by funders and used by developers and evaluators of new applications—has the potential to produce approaches that we are more likely to use and thus are more likely to help us improve our health status.
These observations describe some of the challenges those of us with chronic conditions face in caring for ourselves and suggest some priorities for those who fund, develop, and evaluate various HIT approaches that would help us do so more effectively. Note that we are not the sole audience for these approaches. As the current rhetoric of patient-centered care delivery is slowly implemented, healthcare teams will increasingly curate for us what we might use from among the vast number of potentially useful technologic aids, devices, programs, and applications. Their requirements are likely to be different from ours.
I urge developers, funders, evaluators for HIT, and health professionals all to remember the context into which new HIT approaches enter: Caring for one's chronic conditions is a tedious, uncomfortable lifelong job. Cool, cute, and interesting programs and devices that help us monitor our blood pressure or remember to take our pills seem like they should break that tedium and attract our interest.
Marketwatch: Gaming your way to better health.
And indeed, many of us with chronic conditions are fun people. But keeping ourselves alive and out of pain is a serious business. We want to spend as little time as we possibly can occupied with the drudgery of caring for ourselves. If we are going to use a new website or device or program, we want it to be easy. We want it to save time, not take time. We do not want to have to learn a whole new technology on the off-chance it might help us out. And we do not want it to be fun. We want a technology that is efficient and useful—one that will help us take care of ourselves so that we can live lives that are fun.