Physicians often use the data found in disease registries to generate four main types of reports that they use to inform patient care (Simon & Powers, 2004):
1. Patient report. Provides the treating physician with information related to the specific condition and lists the recommended assessments for patient care. For example, this type of report would state that a patient treated with radiation therapy for prostate cancer should be given a prostate-specific antigen (PSA) blood test every six months to monitor the cancer.
2. Registry generated exception report. Identifies patients who have missed appointments and are overdue for care. For example, if patients are late for their blood tests, this report would alert the treating physician.
3. Progress report. Communicates how well a physician or an overall provider organization (HMO, physicians group, etc.) is doing in delivering care for a specific patient population. For example, it might provide the percentage of patients in remission for prostate cancer fol- lowing a particular treatment associated with the patients and their care teams.
4. Stratified population report. This report “separates patients into various categories of risk in order to target interventions at the patients with the highest needs” (Simon & Powers, 2004, p. 10). This data is often used by physicians to enroll patients in clinical trials when appropriate.
Similar to EHRs, a host of software products and technologies is available to support disease reg- istries, ranging from public domains to commercial software, all with varying costs and features. The competition for the development of new software products to support medical registries continues to fuel the burgeoning health information technology industry (HIT).
Medical devices with continuous monitoring capabilities Through innovations in the field of digital medicine, such as Apple’s wireless wrist monitor for tracking blood pressure, electronic medical devices provide continuous health monitoring to improve patient health. Although the software to use a smartphone for health monitoring is still relatively new, implanted medical devices that communicate health data to an external device using wireless telemetry is commonly used to treat conditions ranging from an irregular heart- beat to diabetes. Often used in other areas such as meteorology and even vending machine tech- nology, telemetry in the context of healthcare gathers data from often remote or inaccessible places and transmits it electronically to a central piece of equipment for monitoring purposes.
One of the most common medical devices using telemetry is a pacemaker. This medical device is implanted in the chest or abdomen of the patient to help control abnormal heart rhythms
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through electrical pulses that prompt the heart to beat at a normal rate (NIH, 2012a). The pace- maker consists of a battery, a computerized generator, and wires with sensors at their tips, known as electrodes. The electrodes measure the heart’s electrical activity and send data through the wires to the computer in the generator. If a patient’s heart rhythm is abnormal, the computer directs the generator to send electrical pulses to the heart. These pulses travel through the wires to reach the heart. Wireless telemetry is then used to send data from the patient’s pacemaker to the treating doctor, who can then make necessary adjustments.
Globally, more than three million people have pacemakers (Wood & Ellenbogen, 2002). These devices have saved lives and improved the quality of life for many people who suffer from certain heart conditions. Although most insurers provide coverage for device therapy, pacemakers are still very costly, with some estimates ranging from $50,000–$100,000 depending on whether the pro- cedure is done as an inpatient or outpatient (Blue Cross Blue Shield of Tennessee [BCBST], n.d.).
Other medical devices capable of providing continuous monitoring are also in the works. For instance, scientists have developed “camera pills” or capsule endoscopy. Patients swallow the biodegradable pills and transmit video from within their bodies (Bilton, 2013). In further areas of medical technology, researchers at Carnegie Mellon University are working on devices that could provide treatment during the ingestion process (Kim, Chun, Whitacre, & Bettinger, 2013).
According to PricewaterhouseCoopers, medical devices are highly regulated by the Food and Drug Administration (FDA), and the manufacturer’s accountability does not stop after the sale (PricewaterhouseCoopers [PwC], 2011). Tough regulation is necessary, especially given cases of network failure. One recent example concerns CareFusion, a global medical technology company that has recalled several products over the past few years. In October 2010, the company recalled approximately 17,000 insulin infusion pumps. These pumps, used to treat diabetes, were found to place patients at risk of serious health consequences or death.
Although medical devices offer invaluable benefits, privacy issues emerge anytime information is transferred electronically. Because they provide continuous monitoring and data transmission, digital devices are particularly vulnerable to breaches of confidentiality.
E T H I C S P R E S C R I P T I O N
Medical Devices Bring New Problems
Although medical devices can significantly improve and extend lives, they are accompanied by ethi- cal dilemmas, including quality of life and the right to die.
For example, a cardiac pacemaker might significantly extend the life of an adult suffering from heart disease, but the individual’s quality of life might be seriously compromised and lead to physi- cal, emotional, and financial burdens for the family of the individual (Butler, 2010). Before accepting a device such as a pacemaker, patients, their families, and their physicians need to assess the poten- tial long-term risks versus short-term gains. Not all new technologies are appropriate when the patient’s overall mental, physical, and emotional health will not benefit from them.
These new technologies are also not distributed evenly across socioeconomic classes. Some patients might have the means to improve their quality of life or extend their lives, while others might not. Paradoxically, as technology improves, more people are being denied basic care. Sultz and Young
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Telemedicine As society increasingly expects to access services remotely, telemedicine—the use of telecom- munication to provide healthcare from a distance—is becoming more available. The California Business and Professions Code defines it broadly to include
. . . the mode of delivering health care services and public health via information and communication technologies to facilitate the diagnosis, consultation, treatment, educa- tion, care management, and self-management of a patient’s health care while the patient is at the originating site and the health care provider is at a distant site. Telehealth facili- tates patient self-management and caregiver support for patients and includes synchro- nous interactions and asynchronous store and forward transfers. (Board of Behavioral Sciences, 2012, para. 2)
Telemedicine reduces many barriers to healthcare, such as distance, transportation, and even the availability of particular services in one’s area. This is of particular relevance to rural com- munities who often have less access to medical services than their urban counterparts. Examples of telemedicine in acute medicine include psychotherapy over the telephone or by videoconfer- ence and in-home care of elderly patients (Egan, 2010; Novotney, 2011). Studies of the efficacy of telemedicine have shown it to be a good alternative to face-to-face healthcare. In fact, one study found that psychotherapy via telemedicine reduces the stigma often associated with seek- ing mental health services (Ludman, Simon, Tutty, & Von Korff, 2007).
(2011) have referred to this as the “tyranny of technology” (p. 22). They note that many health pro- fessionals become so “mesmerized” by the technology that it often overtakes their basic practices of care. For example, hospitals often allocate the most competent staff and technology to the care of terminal patients. In contrast, fewer resources are given to those patients requiring basic and preventive care. This not only follows the biomedical model of health (see Chapter 1), but also rein- forces the treatment-oriented nature of the U.S. healthcare system over one that makes prevention a priority.
The trend of substituting technology for care can also be observed in the hyper-specialization of U.S. healthcare and the dearth of medical students interested in pursuing primary care, a field of medicine that often utilizes more basic forms of technology. Meanwhile, new subspecializa- tions have emerged as doctors with narrow specialties tend to be rewarded with higher earnings. For instance, orthopedic surgery was once considered a specialty within surgery; now orthopedic surgeons might specialize in one particular part of the body and even one side of the body over another. A pediatric orthopedic surgeon might specialize in arthroscopic techniques for right knees in prepubescent children. Although this represents an extreme example, it nonetheless highlights the endless limits of specializing and the accompanying value placed on medical technology. This hyper-specialization of the medical field makes it more difficult for patients to find general care than specialized care, especially patients with limited financial resources.
To respond to these ethical concerns, the American Medical Association (AMA) and the federal government continue to develop programs to assess the effects of medical advancements. One of the first of these initiatives was the Diagnostic and Therapeutic Technology Assessment program, created as a result of the Technology Assessment Act of 1972. The U.S. Congress early on recog- nized that “it is essential that, to the fullest extent possible, the consequences of technological applications be anticipated, understood and considered in determination of public policy on existing and emerging national problems” (Technology Assessment Act, 1972, § 2 [b]).
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These examples have all been slowly incorporated into insur- ance reimbursement codes, Medicare eligibility, licensing criteria for health professionals, and informed consent guide- lines (Benitez & Jensen, 2002; CMS, 2012c). For instance, Medicare deemed the following health professionals as eli- gible for reimbursement for telemedicine: physician, nurse practitioner, physician assistant, nurse midwife, clinical nurse specialist, clinical psychologist, clinical social worker, and registered dietitian or nutrition professional (American Telemedicine Association [ATA], 2013). More recently, as part of the Affordable Care Act, the Centers for Medicare & Medicaid Services released a publication that outlines the newly approved telemedicine reimbursement codes (2012c). For example, telehealth reimbursement codes now apply to alcohol and substance abuse, depression screening, behav- ioral counseling for sexually transmitted infections, behav- ioral therapy for cardiovascular disease, and behavioral counseling for obesity (CMS, 2012c).
Telemedicine is used increasingly for critical care and emer- gency situations. For example, a program being piloted at the University of California, San Diego, uses telemedicine to reduce the effects on patient care of emergency room over- crowding. An offsite doctor is paged to remotely “link in” to a telemedicine station in the emergency room to see patients. This is done in conjunction with an emergency room nurse who is physically present with the patient (Brubaker, 2013). Other efforts within emergency care utilize telehealth technology to connect emergency departments and ambulances (Bashford, 2011).
The technologies associated with telemedicine are also changing the working lives of health pro- fessionals. For example, if you go to the emergency room in the middle of the night with a broken foot, someone in Australia might review your x-ray, as telemedicine is widely used in radiology. Instead of employing a radiologist overnight, a hospital can outsource this service to a doctor in a country where it is daytime. Such a practice has proven cost-efficient for hospitals, without reducing the quality of care (Clark, Huckman, & Staats, 2012).
Data collection New technologies also make data collection more efficient and effective for healthcare provid- ers and insurers, and for research purposes. Hospital and ambulatory care settings benefit from these technologies in multiple ways. Beyond the financial benefits, providers can better track their patients over time without requiring physical office space. Health records can be transferred and shared easily between healthcare providers, and records can be updated more efficiently. This greater efficiency should also result in cost savings to hospitals and ambulatory care facilities alike. Accreditation of healthcare institutions has the potential to be done remotely and more frequently because travel to the site is not necessary. If providers believe that at any moment they could be reviewed, they are likely to keep more accurate records.
Insurers have taken advantage of recent technologies for both reimbursement purposes and data monitoring. In fact, technology is said to be driving the growth of this industry. A recent
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▲ Tele-consultation allows a facility that does not have a neurology department to communicate with one that does, resulting in an immediate diagnosis.
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report by Cognizant, a leading business consulting firm, identified mobile technology and social media as emerging technologies being used in the insurance industry (Kim & Khuntia, 2012). For example, insurers are now using mobile technology and social media to appraise medical claims more efficiently. This modernization effort is largely driven by the industry’s desire to improve customer service among insurers, providers, and patients. Insurance companies rely heavily on the use of electronic records and data.
Clinical researchers use electronic records to access and analyze data remotely, improving effi- ciency and cost. EHRs make data readily available and can potentially facilitate research of a large cohort with a specific condition, such as kidney disease or diabetes.
However, as noted previously, privacy issues arise in sharing patient data electronically for the purpose of research. Indeed, one of greatest concerns of the bioethics community is the improper use of patient information by pharmaceutical companies for both research and targeted advertising.
In 2011, five big drug companies (Pfizer, Merck, Roche, Johnson & Johnson, and Bayer Healthcare) announced plans to use electronic health data gathered from patients of 13 hospital systems across New York State (Eisenberg, 2011). This data is used to identify and enroll participants in drug studies. Recognizing that federal law bans medical providers, hospitals, and insurers from disclosing identifying information such as names, addresses, and Social Security numbers, drug companies have devised a legal strategy to work around this.
The drug companies have offered to pay hospitals between $50,000 and $200,000 per query to compile a list of patients who match a trial’s requirements (Eisenberg, 2011). Once they deter- mine how many patients might qualify and where they are located, the hospital seeks approval from a local ethics board, and then contacts the patients’ doctors. At the end of this process, a drug company has access to personal information only if the patient consents, but consent is not required for the initial database search. Interestingly, physicians and hospitals have largely wel- comed this initiative because it makes them and their hospitals more “attractive research part- ners” (Eisenberg, 2011). However, it raises significant ethical concerns for patients. In particular, data breaches and the potential for third parties to reconnect names to data (even if patients are anonymous) are just two of the ethical and legal issues.
This fear of data exposure is not without evidence. In 2011, as part of a settlement, UCLA Health System agreed to pay almost $900,000 after two celebrity patients alleged that hospital employees reviewed their medical records without authorization (Hennessy-Fiske, 2010). Although federal and hospital officials would not reveal the names associated with this particular settlement, in 2009 the Ronald Reagan UCLA Medical Center was fined $95,000 for privacy breaches of Michael Jackson’s files. (Jackson was taken to that hospital after his death) (Hennessy-Fiske, 2010). A simi- lar breach was reported to have occurred in 2007 with the medical records of actress Farrah Fawcett (Ornstein, 2008). In this case, information was reportedly sold to the National Enquirer. In fact, the news that her cancer had returned was posted on the tabloid’s website before Fawcett was able to inform her son and closest friends. The hospital fired the employee responsible, and UCLA issued an official statement ensuring the public of its commitment to privacy (UCLA Media Relations, 2008).
Data exposure of individual medical records is not limited to celebrities. The U.S. National Research Council identified insider attacks as the primary threat to patient data privacy. Among the primary threats identified are vengeful employees or insiders who cause accidental disclo- sures, abuse access privileges, or access information for spite or for profit (Knudson, 2013). In theory, misuse of patient data has the potential of endless consequences.
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Summary and Resources This chapter describes leading medical technologies and their benefits. There is an increased spending in research and development, and the health-tech industry continues to expand. Significant advances are occurring in the areas of pharmaceuticals, medical procedures, medical devices, diagnostic equipment, and information technology. Longer life expectancies associated with particular diseases, improved quality of life, and more efficient sharing of health records can all be attributed to developments in medical technology. Information is also more accessible for patients, and, as a result, patients are now better able to be active participants in their own health management and care.
This chapter also highlights how the use and over-use of technology in healthcare contributes to higher healthcare costs. For instance, the third-party payer system includes few deterrents for the misuse of technology. Also the wide variation in the use of technology has both quality and cost consequences for the U.S. healthcare system.
The Affordable Care Act aims to address some of these issues in order to make the U.S. system more accountable, efficient, effective, and equitable. However, at the core of the U.S. healthcare system is a culture that is characterized by the increased use of medical technologies. Embedded in this culture is the idea that the “newest is always better.” As a result, this poses a challenge to any reform of healthcare.
Compounding these technological challenges are complex ethical and legal issues. Ethical issues about the morality of extending someone’s life without considering aspects of quality are becom- ing increasingly relevant as people are living longer with the assistance of health technologies (e.g., the pacemaker). In terms of the ethical treatment of patient data, ensuring privacy and confidentiality have long been at the forefront of healthcare laws in the United States. However, new technologies such as electronic health records give rise to new ethical and legal challenges. Patients are growing progressively concerned about the measures being taken to ensure the safety of their medical records, especially now that records can be shared within seconds.
To complement this discussion, Chapter 11 compares the United States relative to other health- care systems globally. For example, do other countries have a heavy reliance on medical technol- ogies? How do their health outcomes compare to those of the United States given their different uses of technology? The answers to these questions contribute to a larger understanding of the unique features of the U.S. healthcare system and offer additional lines of inquiry for improving it.
accountability Ensuring that patients, doctors, hospitals, and insurers are responsible for the healthcare they provide, including the costs of technology.
electronic disease registries Electronic collections of data related to patients with specific diagnoses, conditions, or medical procedures. The primary purpose is to serve as a “comprehen- sive disease management strategy” (Simon & Powers, 2004).
electronic health records (EHRs) A collection of medical documents that can be shared across different healthcare settings and are stored in a secure database. An EHR contains medi- cal history, diagnoses, medications, immunization dates, allergies, radiology images, and lab test results.
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evidence-based medicine (EBM) A set of clinical guidelines that represents the “best prac- tices” and “proven treatments” in healthcare that can serve as a tool for the practice of medicine.
health technology assessment (HTA) The evaluation of the efficacy and safety of new medi- cal technologies by privately funded technology assessment organizations. These expert consul- tants evaluate the scientific evidence supporting a particular technology.
medical technologies A broad array of devices, instruments, or systems related to how medi- cal knowledge is applied. Includes innovations that help people stay healthy, better diagnose disease, treat illness, and provide a better quality of life.
patient-centered A system of care that is characterized by patients playing an active role in their care and decision making rather than being driven solely by the physician. Patients are now active participants in their healthcare rather than passive recipients of care.
patient-facing technology These technologies are broadly defined as policies, processes, or procedures controlled or supported by a healthcare organization that facilitate the access to and use of health information by individuals, family members, and other proxies. One of their goals is to support direct interaction with customers.
physician quality reporting system (PQRS) Part of the Quality Initiatives spearheaded by federal and state agencies and medical associations to assure high-quality, cost-effective health- care for all Americans through accountability and public disclosure.
point-of-care testing (POCT) Technologies that allow patients the ability to test their own vital signs and immediately communicate them to a healthcare professional at a remote location.
telemedicine The use of telecommunication to provide healthcare from a distance.