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Patient-centered care is an important aspect of high-quality care. Health informatics, particularly advances in technology, has the potential to facilitate, or detract from, patient-centered cancer care. Informatics can provide a mechanism for patients to provide their clinician(s) with critical information, and to share information with family, friends, and other patients. This information may enable patients to exert greater control over their own care. Clinicians may use information systems (e.g., electronic medical records) to coordinate care and share information with other clinicians. Patients and clinicians may use communication tools and information resources to interact with one another in new ways. Caution in using new information resources is warranted to avoid reliance on biased or inappropriate data, and clinicians may need to direct patients to appropriate information resources. Perhaps the greatest challenge for both patients and providers is identifying information that is high-quality and which enhances (and does not impede) their interactions.
The concept of patient-centered care has received increased attention since the publication of the 2001 Institute of Medicine (IOM) report Crossing the Quality Chasm.1 This landmark study created a new framework for defining health care quality and improving systems of care and defined six aims, or core values, for the delivery of health care: safe, effective, efficient, patient-centered, timely, and equitable.
Patient-centered care is specifically defined as “care that is respectful of and responsive to individual patient preferences, needs, and values.”1 The Institute for Healthcare Improvement has expanded this brief definition to explain that “Care that is truly patient-centered … makes the patient and their loved ones an integral part of the care team who collaborate with health care professionals in making clinical decisions…. puts responsibility for important aspects of self-care and monitoring in patients’ hands — along with the tools and support they need to carry out that responsibility. Patient-centered care ensures that transitions between providers, departments, and health care settings are respectful, coordinated, and efficient.”2 In an extreme vision of patient-centered care, Berwick defines it as “The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.”3
Jim Naugton of the American Board of Internal Medicine has proposed an action agenda for patient-centered care as reported by Wachter: “1) Patients’ preferences should be respected; 2) We should attend to patients’ emotional needs, context, comfort and meaning; 3) Patients should be engaged and empowered; 4) There should be shared decision-making that promotes patient autonomy; 5) Family and friends should be involved in care decisions where appropriate; and 6) Care should be coordinated within and across systems.”4
Information is critical to patient-centered care, and the field of health informatics has evolved in recent years to focus on how information is acquired, stored, and used in health care, with a particular emphasis on technology.5 Informatics can promote patient-centered care, though it can potentially serve as a barrier to patient-centered care, as well. While informatics can facilitate the availability of important information, information technology can also increase bureaucracy, contribute to dehumanization, and interfere with doctor-patient relationships. Figure 1 depicts a variety of ways that informatics can be used to promote, or detract from, quality oncology care. Specifically, patients and clinicians exist in a universe of information. This information is of varying quality, with only a portion representing high-quality information. One way that information technology can promote patient-centered care is by providing a mechanism for a patient to provide his or her clinician(s) with critical information about him or herself, including the patient’s functioning and well-being (e.g., health-related quality of life) [dark blue arrow]. Similarly, clinicians can use informatics to integrate the information they learn from patients with their medical knowledge and data resources to improve patient care [pink arrow]. Informatics can also help patients share information with their family and friends, and with other patients (e.g., social networking sites) [dotted orange lines], as well as helping multiple members of their care team update and share critical information about them (e.g., electronic medical records) [dotted plum lines].
At the same time, it must be noted that much of the information available to both clinicians and patients is biased, incorrect, or otherwise not useful. Low quality information is shared frequently among patients6–7 (e.g., unmoderated discussion boards) [dashed light blue lines] and even clinicians (e.g., electronic medical records that fail to capture key elements relevant to the patient’s care) [dashed yellow lines]. Misinformation may result in patients’ developing high levels of anxiety or questioning the competence of their cancer specialists. Because clinicians are in a better position to judge information quality, many of them help direct their patients to appropriate information resources [lavender arrow].
The key to harnessing the potential of informatics to promote patient-centered care is to use technology to direct both patients and clinicians to high-quality information, and to share this information with one another. These opportunities for informatics-facilitated patient-centered care are described in more detail in the following sections.
The delivery of cancer care, arguably one of the most complex, multidisciplinary, and data-intensive undertakings in all of medicine, is well suited to the wider use of electronic health records (EHRs) to manage oncology data and workflows. Many cancer therapies entail considerable patient morbidity and risk, and the oncology EHR is an important clinical tool to enhance the IOM principles of patient safety, timeliness, and efficiency, as well as patient-centeredness.
Regrettably, oncology care in 2011 is not as safe and evidence-based as it could be. Hospital and office workflows, still largely paper based, contribute to errors such as omissions and duplications that can cause patient harm. Problems include illegible handwriting, computational prescribing errors, inadequate patient hand-offs, and drug administration errors. For example, in a retrospective review of 1262 adult oncology visits across three clinics and 117 pediatric oncology visits in a single clinic, 7.1% and 18.8% of the visits, respectively, were associated with a medication error. Almost 60% of the errors had the potential to cause harm, and in 13% of cases, actual patient harm did result.8 Even when computerized provider order entry (CPOE) systems are utilized, chemotherapy errors are not eliminated. A report from the Dana-Farber Cancer Institute (DFCI) in 2000 showed that 4% of all adult chemotherapy orders written during the time course studied had at least one error.9
EHRs have great potential to minimize common chemotherapy-related errors when designed and implemented according to basic safety principles. The American Society of Clinical Oncology (ASCO) and the Oncology Nursing Society recently published a joint set of 31 safety standards across seven domains to govern the administration of chemotherapy in the outpatient setting.10 While not specific to EHRs, this document informed the creation of the proposed certification criteria for the oncology EHR developed by the Certification Commission for Healthcare Information Technology (CCHIT), currently in draft form.11 Additional principles of safe practice for an oncology CPOE system were published in the Journal of Oncology Practice in 2008, based in part on seminal work on patient safety performed at DFCI.12 These include prohibition of verbal and handwritten orders, standardization of regimens for chemotherapy and supportive medications, automated dosing calculations, and decision support tools to notify users of allergies, drug interactions, and needed dose adjustments.
Patients with cancer should expect that their care is safe and effective. Little is known about oncology patients’ attitudes towards chemotherapy safety principles and practices. One survey performed at a regional Swiss hospital of 479 chemotherapy patients showed that 16% had experienced an error in their care, and over 55% expressed concerns about errors.13 Most of those surveyed agreed that patients can play a role in error prevention; however, only a minority identified that hospital staff actually encouraged them to report errors in care that they might have recognized (e.g., failure of staff to perform appropriate hand hygiene in the patient’s presence). Providers should encourage patient participation in making care safer for oncology patients, and institutions should facilitate patient empowerment by implementing electronic systems to promote communication among providers and between patients and providers, including systems for reporting errors.
Cancer patients in particular have high information needs, and these might be well-served by interaction with an EHR14 by, for example, using a patient portal, as discussed below. Even at the level of a single provider and patient, there are opportunities to integrate the EHR more fully into the visit as an enabler of patient-centered care and a communication tool. While EHRs are largely used today to store and transfer patient data and document visits for purposes of reimbursement, they could more effectively be used at the point of care in the exam room to educate patients (e.g., viewing imaging studies together), to engage them in co-creation of visit notes, and to enlist them in ensuring the accuracy of the data being recorded.15 It should be noted that the high cost of EHRs can be a critical barrier to adoption of these systems.
Personal health records (PHRs), sometimes referred to as personally controlled health records, are electronic tools used by individual patients to store and share medical information. Most PHRs fall into one of two categories: cloud-based standalone PHRs developed by companies such as Google and Microsoft or tethered PHRs integrated with a provider’s specific EHR product. Despite interest across multiple stakeholder groups and existing pilot projects sponsored by the Centers for Medicare and Medicaid Services in the U.S.,16 adoption of PHRs has been slow. This may be due to a variety of technical and policy barriers, with the lack of interoperability across platforms and organizations a key issue.17 Krist and Woolf described a model to improve the patient-centeredness of the PHR. They defined five levels of functionality, ranging from a passive collector of patient information to an integrator of decision aids, personalized messaging, and vetted health information, to enable self-management and action.18 To serve the complex and interrelated care needs of oncology patients most effectively, a PHR would have to achieve this highest level. There is little information at present on how oncology patients are using PHRs and whether the issues and barriers faced differ substantially from those in primary care populations.
One important concern is whether patients with cancer might have higher levels of anxiety if they receive uninterpreted imaging or lab results from a tethered PHR without clinical context provided to them in a face-to-face visit. One small study suggests this is not an issue for a population of breast cancer patients.19 Other areas that need to be addressed to more fully understand the role that PHRs might play in oncology include privacy and security issues, the accuracy of patient-reported history of past cancer treatments (especially specific drugs/doses or radiation fields), and how PHRs might improve survivorship care. While it seems inevitable that the use of PHRs will increase in this population, prospective studies should be designed to identify best practices and guidelines developed to support patient-centered care.
In addition to cloud-based or tethered PHRs, there are a variety of ways that patients can use electronic systems to provide information to their clinicians. For example, web portals enable patients to communicate with their physicians, request prescription refills and appointments, and access their health records, laboratory test results, and x-rays and other images. Studies have shown that provider messaging improves patients’ perceptions of the quality of overall care and doctor-patient communication.20 Patient satisfaction has been shown to be highest for information necessary for ongoing active care (e.g., medication refills, provider messaging, and lab test results).21–22 Patient portals have also been shown to be a useful intervention platform for patient coaching and education focusing on chronic conditions, such as diabetes,23–24 heart disease,25 or focused on health risk factors such as hypertension,26 and smoking.27 Patient portals that have been implemented in cancer centers often include a focus on symptom identification and monitoring, but few studies have focused on the use of web portals among cancer patients.28–29
The collection and interpretation of structured information from patients can inform and guide clinical care. For example, routine assessment of patient-reported outcomes (PROs) in areas such as health-related quality of life (HRQOL) and symptom monitoring has been shown to improve patient care by improving patient-provider communication30 and the identification of treatment symptoms31–32 and psychosocial problems.33–34 As EHRs and data capture have become increasingly integrated into patient care, providers and researchers have begun to implement electronic PRO (ePRO) assessments in clinical practice. Some of these systems link with the EHR35 or have been designed to enable linkage in the future.36
Compared to paper-based PRO assessments and questionnaires, ePRO assessments provide the benefit of automating both the administration and the scoring of the assessment, increasing patient satisfaction and ease of use, while minimizing missing data and the time delay in reporting results to providers.37–39 Electronic assessments also facilitate patient-centered care by enabling customization of the assessments and increasing flexibility in selecting the frequency and locations of assessments.
While cancer patients have expressed a strong interest in using ePRO systems to evaluate their symptoms and HRQOL, they have also emphasized the need to be asked questions that are relevant to their specific conditions and needs.40–41 Thus, the type of cancer, phase of the disease (e.g., active treatment or long-term survivorship), and treatment course may all impact the type of symptom and HRQOL assessments that can best inform clinical care. Electronic PRO systems provide options for assessments to be tailored to the needs of patients and providers by, for example incorporating score thresholds, branching decisions, and computer-adaptive testing techniques. One example of this method currently in development is an ePRO system that has incorporated a patient-reported version of items from the Common Terminology Criteria for Adverse Events (PRO-CTCAE).42 Specific adverse events can be selected prior to administration or can be used to trigger additional questions, allowing for assessments that are tailored to the needs of the individual patient.
As noted above, ePRO systems can also promote patient-centered care by providing flexibility in choosing the location and method of assessment. For instance, tablet-based computing can be used to administer assessments in clinic settings, with little impact on patient workflow.43–47 Other systems allow for data collection outside of the clinic using a range of mobile technology such as Internet-based patient portal websites,35,42 mobile technology and text messaging,48–51 and computerized telephone surveys.52–53 These assessments allow for clinical follow-up and monitoring across a wide range of clinical time points and frequencies, ranging from twice-daily assessments and text messages from patients undergoing chemotherapy54 to long-term surveillance of symptoms and HRQOL in long-term survivors.55
Although a large number of Americans report using the Internet, individuals with lower household income (below $30,000/year) and less than a high school education report much lower Internet usage rates.56 While ePRO is popular among patients, and Internet use is common among most patient populations where pilot testing occurs,55 these patients are typically receiving treatment at academic institutions and may not be representative of all patients receiving care.
Cancer patients are also utilizing informatics to identify resources, smooth transitions, and help navigate their care. In 2006, the Pew Internet and American Life Project found that 80% of Internet users in the United States have searched for health-related information via the worldwide web.57 Patients who learn about proposed treatments seem to have a clearer understanding about what to expect through the processes of diagnosis, acute treatment, and recovery. This gathered knowledge increases health literacy and therefore has the capacity to make patients more actively involved in decision-making processes. Informatics also facilitates different forms of family participation, broadening the network of care and support beyond the individual, and potentially empowering an entire kinship/social network with the tools of information, online assistance, and support from the biomedical community.
Patient navigation software allows cancer patients and survivors to organize many aspects of care, from initial diagnosis through long-term survivorship. This technology assists patients who otherwise may have felt socially isolated or restricted by geographic barriers to link up to informational, medical, and psychosocial resources.58 Internet communication tools such as chat rooms, discussion boards, blogs, and online support groups may help patients share experiences and ask questions through the mutual support of other cancer survivors. For day-to-day assistance, some software programs allow patients to develop an online calendar to organize treatment visits and invite friends and family to view tentative schedules and sign up to assist the patient with meals, transportation, childcare, or other support services, as shown by the example in Figure 2. New models of mobile phone apps are now emerging so that patients are not tethered to their desks, but rather have much of this information at their fingertips at all times.59
Historically, oncology care was responsible solely for treating or removing cancer, as an acute condition. Patients previously experienced short- and long- term side effects from cancer and its treatments with few, if any, resources to address these effects in their lives outside the realm of biomedical surveillance. Survivorship care is an evolving field that highlights the importance of a holistic, patient-centered plan moving beyond the removal of malignant cells within the body. In the 21st century, this shift is coupled with the development and implementation of electronic mechanisms to give patients more direct access to information regarding the treatment of their disease, and goals and guidelines for recovery. Standardized templates now deliver knowledge designed to facilitate the transition from cancer-patient to cancer-survivor, as online architectures address follow-up care, provide recommendations on how to reduce the risk of recurrence or new cancers, and suggest creative solutions for adapting to late medical and psychosocial effects of cancer therapy. Innovative, interactive digital databases are now facilitating unprecedented coordination among cancer specialists and primary care providers.
Several organizations, including ASCO and the National Coalition for Cancer Survivorship (NCCS) have been working towards the design of an electronic version of a survivorship care plan template, such as the example in Figure 3. The main goal is to display information in a useful way for both patient and associated cancer and non-cancer providers.60 Having this information in an electronic format easily allows for amendments or additions to be made to a patient’s treatment plan, if s/he has a recurrence, or if there are any other changes in medical history. Some survivorship software has the ability to interface with a facility’s EHR. Not only does this link survivorship care plans to all other medical records (promoting adherence amongst accessing providers), in some cases, it also allows for fields (such as patient demographics, pathology characteristics, or received treatments) to be automatically populated. This can save large amounts of time in the creation of a care plan and promote accuracy within the plan. Some electronic versions of care plans have been designed with a patient portal which allows the patient to log in with an assigned username and password to view, print, email providers; fill out forms; be notified of potential research opportunities; and/or send a created care plan to a treating physician--hence increasing communication between primary care providers, oncology specialists, and the patient.
Informatics has also had an important impact on how clinicians and patents interact, in a way that facilitates patient-centeredness. In second-generation medicine, referred to by some as “Medicine 2.0,” healthcare systems “… need to move away from hospital-based medicine, focus on promoting health, provide healthcare in people’s own homes, and empower consumers to take responsibility for their own health.”61 Hartzband and Groopman contend that despite medicine’s history of embracing technological innovation, nothing has impacted medical practice, and the relationship between patients and healthcare providers as much as the Internet.62 Search engines have now leveled the playing field, and the control over the information flow has now shifted away from the physician. A new generation of physicians and patients is being exposed to social media tools that stimulate a bidirectional sharing of images, thoughts, emotions, and experiences that undoubtedly influence how medical decisions are made beyond the pure technical evidence.
In an increasingly familiar scene, patients come to medical appointments with binders containing PubMed reprints, guidelines, and educational documents downloaded from websites maintained by cancer and advocacy organizations. They may also bring misinformation disguised as high-level evidence and available from various uncurated websites. Information technology has also changed how providers approach patient care. Physicians will frequently consult the Internet themselves rather than doing a PubMed search or reviewing sites like UpToDate. Well-honed diagnostic clinical skills remain critical, but online resources and risk factor modeling tools now influence providers’ interaction with patients, in what has been termed a transition from “bedside medicine” to “desktop medicine.”63 It is not surprising that in his review of the book “The Medicalization of Cyberspace,” Campion described cyberspace as “… loaded with health information because this is one of the main things that Web users want.”64
Thus, informatics is changing how health care providers and patients communicate. Previously, physicians were shielded from their patients by receptionists, answering services, and pagers. Today, patients often feel free to engage their providers anywhere via e-mail, which may produce certain boundary issues. Patients who get immediate responses to their emails may overuse this form of communication, putting the providers in a difficult position. It is critical that patients understand that under no circumstances is email an appropriate communications tool for emergencies. Patients and providers may also use social networking sites, and providers may sometimes choose to befriend or accept requests to “friend” other health care professionals and patients. However, before making these choices, it is important for professionals to remember that they may wish to shield some of their personal activities from people in their professional lives. Public postings on Twitter are now being digitally archived by the Library of Congress.65 A recent limited survey of self-identified physicians with 500 or more followers on Twitter observed that as many as 3% of tweets would be categorized as unprofessional and up to 10% of those users had committed potential privacy violations.66 Along these lines, professional societies are beginning to pay attention to electronic modes of communication. For example, in 2010 the American Medical Association issued a policy statement on professionalism in the use of social media.67
Despite these limitations, social media tools can prove quite useful. Content analysis of information on the Internet can identify important topics that are under-represented.68 Narrative analyses have also shown how effective the sharing of personal cancer experiences by survivors and caregivers on video and posted on YouTube can be as vehicles to allow other patients to model coping skills.69 Webinars and video chats sometimes include the option of calling in or emailing questions, which can help remove geographic barriers to accessing information and minimize the stigma or embarrassment felt by cancer patients regarding issues such as sexual dysfunction. Similarly, patients may use social networking sites to connect with other patients with similar needs and concerns. There are Facebook pages specifically for cancer survivors and fertility, African Americans, caregivers, and other groups with particular interests. Organizations such as ASCO have developed carefully editorialized websites targeting patients (e.g., Cancer.Net) that contain videos, blogs, and other educational materials. Many of these organizations also maintain a prolific Twitter and RSS (Really Simple Syndication) feed, Facebook presence, blogs, and podcasts to advertise new educational material, share information on the release of new data, among others.
Social media tools could also be integrated into EHRs as part of a patient-centered care approach, but existing strict and potentially limiting rules about patient privacy would need to be modified to accommodate the integration of these tools into clinical practice.70 The combination of web and mobile tools could support exchanges of information that are integrated into the EHR via asynchronous consultations (not live) or live videoconferences.
Another important area of concern is the so-called Direct-to-Consumer-Advertising (DTCA). DTCA became ubiquitous once authorized by the U.S. Food and Drug Administration (FDA) back in 1985 to cover print media and expanded in 1997 to include broadcast media.71 Even though it has been labeled by some as “an uncontrolled public health experiment,”72 DTCA is now the fastest growing form of pharmaceutical marketing in the US, outpacing physician marketing and research and development.73 Internet-based, interactive DTCA marketing systems transcend national borders with no formal FDA oversight in place. Third-party private websites also often gain large public viewership in a specific narrow area of knowledge, and are perceived as neutral even though many receive direct pharmaceutical company support without adequately disclosing it. In view of this conflict of interest, groups such as the Consumer Union have advocated for tough and specific oversight rules for DTCA.74
The Internet has opened the door to new and more dynamic interactions between and among patients and health care providers, even though current models of physician reimbursement provide little incentive for clinicians’ participation. Regardless, high-quality data are now available at one’s finger tips, and it is inevitable that health care providers will continue to explore social media as tools to disseminate health information, educational initiatives, and useful URLs containing reputable material of interest to the patients they serve. As Hartzband and Groopman stated, “knowledge is power,” but “… information and knowledge do not equate wisdom…”62 The amount of information available on the Internet and need of expertise to apply it properly mandates an ever close relationship between patients and their physicians.
The Commonwealth Fund describes patient-centered care simply as care that is “…more centered around the needs and preferences of patient and family.”75 As described above, there are a number of ways that informatics can be used to promote such patient-centeredness in oncology care. Benefits include better access to health information and health services, improved patient care and safety, greater coordination of care, and more empowered patients. At the same time, it is important that information and technology not come between providers and their patients, with providers spending more time with computer terminals than patients.63 Real issues of cost, access to and comfort with technology, privacy and security, health literacy, feasibility, and social inequality must be addressed. Perhaps the greatest challenge for all is to find and apply information that is high-quality and helpful from the vast array of other information that is now available and use it to improve patient care while preserving the humanity of this interaction.
Funding Sources: Drs. Snyder, Wu, and Wolff receive funding from the National Cancer Institute (R21CA134805-01A1). Drs. Snyder and Wu are supported by a Mentored Research Scholar Grant from the American Cancer Society (MRSG-08-011-01-CPPB). Drs. Wolff and Snyder and Ms. Bantug receive funding from the Maryland affiliate of Susan G. Komen for the Cure. Dr. Jensen receives funding from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (1U01AR057971-01) and National Cancer Institute (3U01AR057971-02S1).
Claire F. Snyder, Associate Professor of Medicine, Division of General Internal Medicine, Johns Hopkins School of Medicine, 624 N. Broadway, Room 657, Baltimore, MD 21205.
Albert W. Wu, Professor of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health.
Robert S. Miller, Clinical Associate, Breast Cancer Program, Oncology Medical Information Officer, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.
Roxanne E. Jensen, Research Instructor, Cancer Control Program, Lombardi Comprehensive Cancer Center, Georgetown University.
Elissa T. Bantug, Breast Cancer Survivorship Program Coordinator, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.
Antonio C. Wolff, Associate Professor of Oncology, Breast Cancer Program, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.