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J Natl Cancer Inst Monogr. Apr 2010; 2010(40): 81–89.
PMCID: PMC3482949
Outside the Box: Will Information Technology Be a Viable Intervention to Improve the Quality of Cancer Care?
Bradford W. Hesse,corresponding author Christopher Hanna, Holly A. Massett, and Nicola K. Hessecorresponding author
Affiliations of authors: Division of Cancer Control and Population Sciences (BWH) and Office of Communication and Education (HAM), National Cancer Institute, Bethesda, MD; Oncology Information Systems, Varian Medical Systems, Palo Alto, CA (CH); Department of Obstetrics and Gynecology, Franklin Square Hospital, Baltimore, MD (NKH)
corresponding authorCorresponding author.
Correspondence to: Bradford W. Hesse, PhD, National Cancer Institute, 6130 Executive Blvd, MSC 7365, Bethesda, MD 20892-7365 (e-mail: hesseb/at/mail.nih.gov).
The use of health information technology (IT) to resolve the crisis in communication inherent within the fragmented service environment of medical care in the United States is a strategic priority for the Department of Health and Human Services. Yet the deployment of health IT alone is not sufficient to improve quality in health service delivery; what is needed is a human factors approach designed to optimize the balance between health-care users, health-care providers, policies, procedures, and technologies. An evaluation of interface issues between primary and specialist care related to cancer reveals opportunities for human factors improvement along the cancer care continuum. Applications that emphasize cognitive support for prevention recommendations and that encourage patient engagement can help create a coordinated health-care environment conducive to cancer prevention and early detection. An emphasis on reliability, transparency, and accountability can help improve the coordination of activities among multiple service providers during diagnosis and treatment. A switch in emphasis from a transaction-based approach to one emphasizing long-term support for healing relationships should help improve patient outcomes during cancer survivorship and end-of-life care. Across the entire continuum of care, an emphasis on “meaningful use” of health IT—rather than on IT as an endpoint—should help put cancer on a path toward substantive continuous quality improvement. The accompanying research questions will focus on reducing the variance between the social and technical subsystems as IT is used to improve patient outcomes across the interfaces of care.
An article in the Washington Post, published at a time when discussions over the American Recovery and Reinvestment Act of 2009 were intensifying, attracted attention with a provocative lead: “Here’s the best-case scenario for the government's plans to spend $19 billion on computerized medical records: seamless communication between doctors and patients, and far fewer mistakes. And the worst-case: $19 billion goes down the drain” (1). The question posed by the article was not focused on whether investing in health information technology (IT) would be important for improving the practice of medicine in the 21st century; rather, it was focused on how the investment should be made.
It is our contention that health IT (health IT refers to the hardware, software, integrated technologies or related licenses, intellectual property, upgrades, or packaged solutions sold as services that are designed for or support the use by health-care entities or patients for the electronic creation, maintenance, access, or exchange of health information. [Health Information Technology for Economic and Clinical Health {HITECH} Act of 2009]) alone will not be sufficient to resolve the interface issues in cancer care. Rather, it will take a focus on making these technologies maximally productive in supporting effective communications between members of the care team—primary care, specialist care, patients, and caregivers—that will turn the tide in quality improvement (25). “Getting it right” in this context means rigorously applying the principles of user-centered design to support the best practice of medicine by creating tools that are easy to use, intuitive, protective, and empowering. Following the theme of this supplement, this article examines how cancer care can be improved by employing user-centered applications of health IT across the continuum from prevention and early detection to diagnosis, treatment, long-term survivorship, and end-of-life care.
A User-Centered Approach to Health IT
The methodologies and techniques associated with user-centered design can be traced back to the human factors tradition that gained ascendancy in the field of engineering during the latter half of the 20th century. Aviation specialists began noticing that an inordinate number of fatal aircraft crashes could be traced back to unwieldy designs for cockpit controls. To solve the problem, engineers called on the expertise of psychologists, ergonomicists, cognitive scientists, and other behavioral experts to work with them in creating systems that tolerated human limitations and augmented human strengths. The result has been a remarkable improvement to the safety of modern aviation systems, a record that has continued today (6).
In its original instantiation, the human factors approach was implemented as a way of meshing design affordances with human capacity in both physical (ie, ergonomic) and mental (ie, cognitive) domains. With the onset of the information revolution, the importance of augmenting the cognitive abilities of users became especially important (7,8). As social psychologist Shoshanna Zuboff noted, technologies from the industrial revolution were used to replace human processes by “automating” physical tasks; technologies from the information revolution were used to augment human cognition by “informating” [sic] tasks (9). Cognitive scientists were needed to construct interfaces between humans and computers that were user-friendly, safe, and appealing to both lay and professional markets (7,8,10). Usability laboratories based on cognitive science approaches (eg, cognitive task analysis, “think aloud” protocol analysis, and so on) became de rigueur in companies competing for consumer dollars over the past two decades (1114).
In medicine and health care, health systems researchers began noticing that avoidable errors were emerging not just because of the faulty design of instruments (15) or product interfaces (16,17) but because of insufficient communication and dysfunctional team processes at the organizational level (4,6,18). Medical informaticians began borrowing from the organizational practice of sociotechnical design (3) to improve the integration between humans and technology not just at the individual level but at the social (eg, care team and family) and organizational (eg, hospital, policy, and regulatory environment) levels (4).
In this article, we use the terms “user-centered design” (8) and “human factors engineering” (6) somewhat interchangeably. The actual analytic techniques used in this regard may differ depending on the specific aspects of the health domain problem in question. Cognitive techniques (7,10,11,15,16,19) may become more relevant when the objective is to evaluate the interface between users and the functional aspects of a health information system, whereas sociotechnical techniques (35,20) may become more relevant if the purpose is to improve organizational or sector-level outcomes.
Stimulating Adoption of Health IT
To be sure, the Institute of Medicine (IOM) reports point to health IT as being a necessary part of the solution for improving outcomes and reducing costs in health care (20,21). Medicine is an information-intensive profession, the authors of the reports argued. Health IT is needed to channel the right information to the right person at the right time to improve the outcome of care and create a system that is predictive, preemptive, personalized, and participative (5,22,2327). Unfortunately, the diffusion of health IT into the core business systems underlying medicine has been disconcertingly slow. In a national survey published in 2009, only 7.6% of acute care hospitals had adopted a fully functional electronic health record (EHR) system (EHRs are an electronic record of health-related information on an individual. EHRs may include patient demographic and clinical health information, such as medical history and problem lists, and may have the capacity 1) to provide clinical decision support, 2) to support physician order entry, 3) to capture and query information relevant to health-care quality, and 4) to exchange electronic health information with and integrate such information from other sources. [HITECH Act of 2009]) (28). A survey published in 2008 found that only 13% of US physicians were even using a basic EHR system (29). Reports have suggested that full enterprise integration of a patient's complete medical record is more the exception than the rule in contemporary medicine (30), and projections have been mixed as to whether the United States will be able to achieve the national goal, set by the Bush presidential administration in 2004, to connect the majority of Americans to EHRs by 2014 (31).
Why has the adoption rate been so slow? One reason is that it takes a substantial financial investment to establish the infrastructure and standards that allow the flow of information across all the necessary subsystems of care (3234). One of the main purposes of stimulating infrastructure development under the American Recovery and Reinvestment Act was to overcome this barrier.
Another reason is that many of the conditions for diffusion of innovations as articulated by communication scientist Everett Rogers are not met with respect to health IT (35). One analysis notes that an EHR may not 1) promise relative advantage over current practice, 2) fit in easily with the user's lifestyle or workflow, 3) be perceived as being easy to implement and use, 4) offer observable benefits to broad communities of users, or 5) be relatively easy to experiment with on a trial basis. Adoption rates could be improved, the authors argued, if system designers adopted a user-centered approach to technology deployment (35). Stakeholders could further influence the diffusion process by making market investments based on usability and documented effectiveness, rather than give in to an artificial market based on public subsidy or vendor dominance.
When health IT systems do not match the needs of users, improvements in care are slowed. For example, early attempts at deploying computerized “expert system” technologies into care settings failed because they were perceived as being too difficult to use, too opaque, or too fragile for use in crucial care settings (36,37). Similarly, large-scale clinical support systems often interfered with clinical workflow and tended to distract practitioners and patients with unusable unwieldy interfaces (38,39). In these cases, technological innovations failed to connect to the demands of physicians working with patients to promote healthy outcomes (36). No matter how elegant they may have appeared from a technical perspective, these innovations did not always hold up when put into practice as part of a real-world system of care (38,40). For IT to support effective medicine, it must evolve beyond its technological focus to emphasize cognitive support for physicians, patients, and their caregivers (19,41,42).
User-Centered Design Across the Cancer Care Continuum
To facilitate our discussion of the user-centered design perspective, we present an overview of some of the components in oncology care as embedded within a typical care system at a major urban hospital (Figure 1). Within the dotted lines are the various departments that comprise most medical care settings, and each represents a subsystem (eg, family and community medicine, urgent care, laboratory services, social services, and oncology). Oncology's role, complete with its own subunits of care, is further highlighted in an expanded box to the right of the diagram.
The structure of the interfaces between these typical care components varies depending on the nature of the financial and organizational connections tying the units together. As these connections evolve, the use of distributed network technologies to bring the elements of care together efficiently and seamlessly will become essential (43). The technological system will need to facilitate the transfer of information from one component to the next in a way that is timely, accurate, and transparent. The social system will need to evolve the protocols, quality improvement procedures, and incentives necessary to keep the system running efficiently as a standard of practice within the hospital.
The following sections focus on each major phase in the cancer care continuum—prevention and early detection, diagnosis and treatment, and survivorship and end-of-life care. We begin each phase with a real example of patient need drawn from medical practice. We then follow with research recommendations aimed at improving care by using the capacity of user-centered health IT (43) to fortify the teamwork and coordination needed to support patients over their life spans.
Prevention and Early Detection
A Patient Example.
A.B. is a 25-year-old female who presents to her family practitioner for routine gynecologic care. Prior medical records are unavailable because of relocation from another state, and she does not know when her last Papanicolaov smear was performed or if the results were normal. A Papanicolaov test is taken as part of her health maintenance. When the results return as abnormal she is referred to a gynecologist for further evaluation and treatment. Upon arrival at the gynecologist office, the abnormal Papanicolaov results from the family practitioner are not available and the patient is unsure of her diagnosis and the reason for her visit.
Root Cause Analysis.
This case speaks to a common error of omission in a health-care system that lacks the capability to connect the dots in health promotion and early detection (44). The case of cervical cancer is a prime example of a neoplasm that is well understood with a highly effective method of early detection. In fact, with the national introduction of routine Papanicolaov smears in routine maintenance exams, the health-care enterprise has been successful in reducing the incidence of invasive cervical cancer from 14.6 per 100 000 women in 1975 to 7.6 per 100 000 women in 2000. Yet, in spite of these successes, the American Cancer Society estimates that slightly more than 4000 women will die each year unnecessarily from cervical cancer (45).
Why does this happen? In a chart review of late-stage invasive cervical cancers within a community hospital, health scientists found that the primary contributor to the unchecked disease was a lapse in routine cervical cancer screening. The majority of these women (56%), all of whom had access to health care, simply missed the opportunity to detect their cancer early through routine Papanicolaov screening (46).
The Role of IT.
The human factors question lies in whether or not it is possible to bring health IT to bear on the problems that limit health-care providers and health-care users from creating a supportive environment for preventive care. The absence of a viable EHR system to share records between practices, or simply to identify a lapse in care, meant that A.B.'s case histories and test results were lost at a time when proactive vigilance might have been warranted. The absence of any consumer-facing interface to the patient record, referred to as a personal health record (personal health records have generally been described as electronic records of health information initiated and controlled by an individual. They can be “tethered” or “integrated” to EHRs, meaning that they allow for personal access to records maintained by a medical institution.), also meant that A.B. lacked the ability or motivation to engage proactively in her own care.
The sociotechnical approaches that appear to have the greatest promise in creating technological support for patients appear to be oriented around the chronic care model introduced by Wagner (47) and described by Taplin (48) elsewhere in this issue. Efforts have been underway to operationalize the chronic care model by using integrative information systems to improve continuity of care in a self-improving delivery system and to provide greater support for preventive services into the front lines of primary care (20). In one related example, a group of health systems researchers at Harvard Vanguard Medical Associates implemented a sociotechnical system based on three defining components: 1) a population management component designed to produce timely actionable data on services needed by individual patients and by populations of patients in aggregate; 2) an organizational shift toward systems-based practice, in which workflows and incentives are altered to support action based on population management data; and 3) a modified style of patient interaction referred to as planned care to empower patients with information and motivational support. The researchers found modest gains in overall organizational quality of care in a 3-year prospective study in diabetes prevention and management. The study's authors concluded that the “ongoing maturation of medical informatics” will allow frontline clinicians to adopt patient management processes “previously reserved for specialized programs” (49).
A mounting accumulation of data suggests that administrative support tools, such as appointment systems and secure messaging to provider teams, can remove some of the barriers patients find in making arrangements for preventive services in cancer (50,51). Online patient education materials, either triggered as an “information prescription” (52) in the clinical encounter or on events based in the EHR, can help correct patient misconceptions during “teachable moments” (53,54) while easing burden on primary care staff (5558). Reminder systems, also triggered from a personalized EHR, can promote better adherence to screening recommendations as well as treatment protocols (51,5961). Providing personalized access to laboratory results can provide patients with feedback on biological processes (such as glucose levels and cholesterol levels) they need to regulate through behavior modifications (24). Even something as simple as providing asynchronous messaging abilities between patients and doctors or patients and a designated advice nurse can reduce costs associated with unnecessary office visits while providing patients with timely health critical guidance (50,62). Some refer to these ideas as a consumer informatics (6366) approach, and it represents an answer to the prevention dilemma from the technology side (61,6770).
A Research Agenda.
In all these applications, the overriding principle lies in creating a health environment in which preventive measures are the default and not the exception. Health systems should make it easy for physicians to practice evidence-based preventive care, with administrative tools geared toward prompting staff and patients when recommended screenings are due and with reimbursement incentives in place to cover the cost of preemptive counseling. Outside the health-care setting, progress is being made in developing new tools for patient empowerment through applications deployed through the Internet. Data from the National Cancer Institute's Health Information National Trends Survey (HINTS) suggest an increase in public engagement in online health information (71,72) and an increase in the number of online Americans who are in e-mail communication with their physicians (71,73). The social consequence of this trend will be an increase in demand on health systems to accommodate patients who are proactive, or “activated,” (47) with respect to their own preventive health care (74).
The human factors agenda, then, is to understand how to use IT to create scalable change in preventive care. The question is what human factors need to be addressed through health IT to promote cancer prevention as default standards for population impact. From a user-centered design perspective, the research agenda should 1) create human–computer interfaces that are understandable to patients and their families and meet their expressed needs, 2) offer structured support for decisions in a way that is easy to use and is congruent with personal values, 3) align incentives to motivate healthy behaviors, 4) give feedback on progress toward personal goals, and 5) expect lapses and then make it easy for patients to reset missed appointments or get back on track with healthy habits (6,75,76).
Diagnosis and Treatment
A Patient Example.
S.W. is a 58-year-old male former smoker who presents with several-month-old shoulder pain to an orthopedist. The orthopedist prescribes pain medication and physical therapy. One month later, S.W. develops a cough and visits a pulmonologist. A chest x-ray is ordered and performed approximately 1 week later. The images reveal a small mass and a pneumothorax. S.W. is asked to schedule a procedure to address the pneumothorax and to take a biopsy of the identified mass. Tissue samples are sent out-of-state for analysis. Three weeks later, while awaiting results of the lung biopsy, he experiences a fracture of his humerus while undergoing his physical therapy. The orthopedist orders a new x-ray and wonders aloud whether the lytic lesions might be because of metastatic disease. The patient reports that he had a chest x-ray a few weeks earlier because of a cough and that a biopsy was done as well, but he does not know the results.
Root Cause Analysis.
This case demonstrates what can happen in a fragmented system of care when neoplastic disease eludes diagnosis and late-stage symptomologies are detected independently across multiple providers. It also illustrates what happens when components of the diagnostic process are slowed down by a reliance on antiquated methods of transmission of information and when, in the absence of a central source of information and a human coordinator, the patient and individual providers do not have “the big picture” on the patient's clinical situation.
From a human factors perspective, this point in the continuum of care represents the most demanding in terms of time sensitivity, technical accuracy, and team coordination. S.W. had no central coordinator, such as a primary care physician. The person who had the opportunity to perform this function was the orthopedist, but this physician did not consider the possibilities carefully. As pointed out by Nekhlyudov and Latosinsky (77) in this supplement, misdiagnosis can lead to a delay in diagnosis and to ineffective treatment of isolated symptoms. It is therefore left to the patient to figure out whether further evaluation is needed and to determine who should do it. In S.W.'s case, misdiagnosis by one provider, left untracked by a central coordinating hub and misunderstood by the patient, led to physical therapy, which led to injury and a delay in appropriate therapy.
The process of deciding how to evaluate symptoms, make the appropriate referral, and coordinate care at the time of diagnosis can be one of the most difficult for physicians and isolating for cancer patients (78). Once the appropriate diagnosis is made, patients and physicians begin the equally challenging phase of cancer treatment. This phase is characterized by a need to coordinate the care of multiple specialists [Sussman and Baldwin (79)] as well to balance the demands of highly complex medical technologies against the human needs of patients.
The Role of IT.
Nowhere is the need for systems support to improve quality of care more greatly needed than in the areas of diagnosis and treatment of life-threatening conditions. In his book titled “The Human Factor,” systems engineer Kim Vicente recounted a “hidden epidemic” in Canada in which cancer care teams in different parts of the country repeatedly made the same mistake of administering two facets of a chemotherapy regimen for childhood leukemia (vincristine, to be administered intravenously, and methotrexate, to be administered intrathecally) in the exact same manner (both delivered intrathecally) with devastating consequences. The “epidemic’ was not resolved until the Canadian health-care system began moving away from an attitude of individual responsibility, or a “blame and shame” mentality, and moved instead toward better systems through human factors engineering to prevent the error from occurring in the first place (6).
One of the most striking points of vulnerability in cancer care is the coordination challenge associated with transitioning from primary care into the collective service of a multitude of diagnosticians, screening technicians, office staff, nursing staff, and medical care specialists.
Health IT can be used to facilitate these interfaces, following a human factors goal of creating “situational awareness,” that is, equally informing members of a team as to the progress being made in collectively addressing and solving a targeted situation. Designing information systems to address situational awareness is what allows suppliers, vendors, and customers to track delivery of a Fed Ex package in seamless and time-urgent ways.
In oncology care, the process may begin with a determination that a patient needs a specific diagnostic test. The questions at this phase relate to who makes that determination and how IT can help the referring and receiving physicians and the patient track and receive the appropriate care. The trigger for a diagnostic visit could come from the physician's discovery of a sign or symptom during a routine visit, a physician's reminder system for screening, or as in S.W.'s case, a patient's search for the explanations for shoulder pain. The first provider to see S.W. simply missed the diagnosis. Whether a decision support tool would have helped in the differential diagnosis is unclear. From a human factors perspective, having multiple ways of triggering a testing event could help reduce omission errors and helped S.W. receive a diagnosis (6).
Once diagnostic testing is ordered, the information must be made available to all of those who are involved in the patient's care. If that had happened for S.W., the second visit to the orthopedist would not have left the physician and S.W. wondering about metastasis. The physician's knowledge of the chest x-ray would have made the diagnosis obvious. If the facility in which the test occurs is electronically linked to all the physicians involved, then the system can generate an order request, provide a tracking number, initiate the appointment setting process, and be a repository for results that all providers and the patient can see. Industry standard messaging protocols can help ensure the integrity of the electronic data interchange, but changes in practice will be necessary to allow the sharing of information across and within institutions. Transparent queuing systems can help provide all members of the care team and the patient with up-to-date status checks on the requested test (24,80). Once the test has been performed, copies of the results can be forwarded to the ordering physician and can be made available to the rest of the care team, including the patient and a primary care physician.
Once the positive result is returned, the coordinating physician must generate a list of differential diagnoses, order the appropriate test, and make the appropriate referral for confirmation. Decision support tools may be useful in linking the coordinating physician with facilitated access to diagnostically relevant information (eg, conditional probabilities of a particular disease occurring given the presence of specific signs and symptoms), but a more important function may be in connecting the entire care team to the relevant literature and evidence bases for treatment planning and then for treatment execution.
During the treatment phases, the original referring physician may fade out of the picture as specialists become the dominant care providers. Many specialist providers may become involved, heightening the need for effective systems to exchange information and coordinate responsibility. In S.W.’s case, treatment specialists would include surgery, radiation oncology, and, potentially, other specialists. All will need to work together to determine primary site, options for treatment, and extent of metastasis. Patients will need help in finding the information that will help them become part of the care team and adapt to navigating a health-care system and set of providers that may be both unfamiliar and complex.
At its core, the challenge of the health IT system during the diagnosis and treatment phases is to serve as a time-sensitive coordination system for the health-care enterprise. A well-designed sociotechnical system can perform this task once the technical details of secure messaging, the organizational details of coordinated access to the information in real time, and the behaviors that need to be supported are made clear.
A Research Agenda.
The challenge during the diagnosis and treatment phases of cancer care is to work on integrating the systems, actors, and tools necessary to seamlessly support the patient during a critical and anxious time. Such a seamless system means that the interfaces of care are no longer barriers to the transfer of information and responsibility. On the technology side, a robust EHR system with ubiquitous but secure access to information for all members of the care team is a necessary starting point. So, too, are the error-checking routines, agenda management systems, and secure messaging channels needed to support evidence-based decision making (41). Most important, however, is clarity with respect to the functional needs of providers and patients who will be using the technology.
On the human side, the role of the primary point of contact during the transition from primary to specialist care must be articulated (81). Health systems research is still needed to ensure that a patient-centered information system supports all the necessary functions, including 1) conveying up-to-date and accurate information to the patient and care team, 2) providing assistance in navigating through the health-care system for appointments and treatment options, 3) offering structured support for vital and everyday decision making, 4) helping patients cope at a time of uncertain outcomes, 5) helping to deal with the emotional side of a difficult diagnosis and treatment plan, and 6) teaching patients the skills they need to manage their condition (82).
New translational methodologies are needed to ensure that advances in diagnostic procedures, imaging, and treatment are implemented in ways that improve patient and system outcomes (83). Promising approaches for human system integration include cognitive task analysis, especially in the context of collective decision making (19); contextual inquiry to determine the fit between technologies, roles, and workflow (3); and data-based systems analysis in the service of continuous quality improvement (2). In all of this research, the technology should be made to protect the sense of trust and relationship that is crucial in a successful partnership for medical care (9,21,84,85).
Survivorship and End of Life
A Patient Example.
T.L., a 67-year-old postmenopausal woman, comes to her primary care provider for routine care. During the examination, the woman complains of symptoms consistent with depression and a selective serotonin reuptake inhibitor is recommended for symptom relief. Review of the medical record reveals that the patient had been treated for breast cancer 10 years earlier. Prescription medication for the patient is delayed pending a telephone consultation with the oncologist providing ongoing cancer care. A week later, when the physicians connect, the discussion reveals a potentially negative interaction of the selective serotonin reuptake inhibitor with the earlier cancer therapy.
Root Cause Analysis.
The case is emblematic of a new cadre of patients—the cancer survivor—made possible by advances in treatment. According to a review by the IOM, the transition from cancer patient to cancer survivor in the current system can be brusque and lonely (86). Problems of communication, uncertain expectations, and disrupted coordination can leave survivors “lost in transition” (86) as they struggle to maintain support in a system otherwise oriented toward reactionary care. Medically, survivors and their primary care physicians must be advised to remain vigilant for a risk of recurrence in the original site or the occurrence of a new cancer in a secondary site. They also should monitor for the late-stage treatment sequelae, late-stage comorbidities, and psychological symptoms stemming from the cancer experience (84,87).
The Role of IT.
Once again, patients’ actions using the Internet may presage the changes needed from a reengineered health system. Following the anecdotal observations noted by members of the IOM survivorship working group, researchers at the National Cancer Institute analyzed data from the Health Information National Trends Survey for evidence of an informational gap at around the time in which cancer patients made the transition from routine care into a phase of long-term survivorship. What the researchers found was that during a period of routine care, patients reported being able to go to their health-care providers first for health information. After a transition to survivorship, patients reported relying on the Internet as their source of first resort, with a concomitant increase in frustration for meeting information needs compared with those under current care (88). Health systems engineer David Gustafson noted that the Internet by itself will not work as a successful intervention for cancer survivors. Instead, systems need to be developed that support the long-term vigilance and care needs of patients, their families, and their caregivers (20,89).
The challenge of IT during this phase, then, is to equip primary care physicians and other support givers with all of the information they need to attend to the distinct needs of the cancer survivor as a whole patient over time (89). This means attending to their physical, mental, and social health needs as suggested by Grunfeld and Earle (90). It also means extending the human factors notion of “situational awareness” from an acute phase to a long-term phase of survivorship and in some cases end-of-life decision making. As sociotechnical experts have explained, support from the Internet must expand from a focus on singular “transaction-based” exchanges to long-term “relationship-based” exchanges (91).
This challenge is echoed by the IOM's exhortation that health-care systems in the 21st century must foster the development of “healing relationships” with patients; that medicine itself must move away from its reactionary focus on the “single visit” to consider ways of supporting people over their life spans (21,22). A redesigned sociotechnical system can play a crucial role in providing sufficient support for patients over the long term (20). A fully integrated EHR should make it possible to avoid late-term interactions between treatments (as was the case with T.L.), to aid in the diagnosis of subsequent conditions, and to personalize monitoring or prevention recommendations based on updated models of conditional risk. Examples of these types of systems have begun to emerge in pediatric oncology, but much work remains to apply the model systematically to adult care (92).
In its review of cancer survivorship, the IOM also recommended the creation of a personalized survivorship plan to help guide monitoring and treatment (86). The purpose of the plan would be to give patients and their physicians a proactive blueprint for how to remain vigilant on late-stage sequelae of cancer treatment and would provide recommendations for how to steer patients toward a plan of prevention and early detection for recurrence [see Grunfeld and Earle (90)]. In 2008–2009, the National Comprehensive Cancer Network added survivorship care recommendations to its non–small cell lung cancer and colorectal cancer guidelines. The addition of the guidelines has been touted in professional periodicals as a way of smoothing the transition from oncology back to primary care (93).
A Research Agenda.
Research is needed to identify ways of making the survivorship care plan an integral part of the cancer survivor's EHR. Just as in the case of prevention, administrative support tools can be made to exploit the plan on a routine basis to ensure that the appropriate vigilance is taken over the course of the patients’ life. Personal planning tools can be made available both to the primary care physician and to the patient to help plan forward for routine examinations and anticipated needs. If recurrence does occur, care may need to be extended beyond the treatment setting into assisted living facilities. If the treatment is not successful, all the issues of case coordination and vigilant monitoring must be extended to include home health-care and hospice workers [Han and Rayson (94)]. Research will continue to be needed in the area of telehealth and in-home care. The needs of hospice workers, nursing home staff, and caregivers will need to be taken into account as human factors specialists endeavor to create an environment that is reliable, safe, and conducive to patients’ wishes for privacy, dignity, quality of life, and estate planning.
Discussions are mounting on how to create a health-care system for the 21st century (21,22,95). Such a system must move beyond a reactionary and acute focus to an emphasis on care that is predictive, personalized, preemptive, and participative (27). Moreover, it must garner the same efficiencies gained in other sectors of the economy through strategic applications of IT to improve the effectiveness of medical care and reduce its costs (27).
The urgency to improve systems of care is especially keen in the case of cancer. Estimates suggest that applying what is known in prevention and early detection alone can reduce overall mortality from cancer by as much as 50% over time (45,96). By applying what is known in personalized surveillance and by enhancing the effectiveness of coordinated care, we can improve outcomes for cancer patients through diagnosis, treatment, and survivorship (86,97). Moreover, by linking our medical data systems, we can create a translational environment in which discovery is pushed from bench to bedside and then back to the bench through informatics systems that serve to connect cancer research to care settings (98).
All of this movement forward in cancer will require IT as a necessary foundation but that is only the beginning. Legislative requirements for “meaningful use” (99) should facilitate the integration of optimally designed social and technologic care systems. The national effort to link the nation's health information systems to enable improved medical communication is only the first step. The next step is to conduct the translational research necessary to produce care standards for linking primary care teams, specialist care teams, technical service providers, and patients in ways that reduce error and maximize effectiveness.
Such a step, we believe, will require a user-centered orientation (6,44,100) to apply data to the problem of reducing error and improving outcomes across the interfaces of care. By making these systems truly supportive of user goals, it should be possible to capture the same return on investment for IT realized in other economic sectors (95,101,102). In cancer care, that return is measured not just in terms of returns in economic investments but in an opportunity to accelerate success against cancer now.
Figure 1.
Figure 1.
Oncology's role in the provider environment. EHR = electronic health record; GI/GU = Gastrointestinal and genitourinary; OB/Gyn = Obstetrics and Gynecology; SRS = Stereotactic radiosurgery.
Funding
None.
Footnotes
B. W. Hesse is an employee of the National Cancer Institute, as is Dr. H. Massett. The work did by them on the article was covered in their official capacities as scientists for the institute. The same is true for Drs. C. Hanna and N. Hesse, who completed their contributions under regular employment.
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