by Sheila M. Gephart, PhD, RN
& Judith A. Effken, PhD, RN, FACMI, FAAN
Gephart, S. & Effken, J. (2013). Using Health Information Technology to Engage Patients in their Care. Online Journal of Nursing Informatics (OJNI), 17 (3), Available at http://ojni.org/issues/?p=2848
Patient engagement, defined as the process of placing patients at the center and in control of their own healthcare, is becoming a chief healthcare priority (AHRQ, November 23, 2011). In February, 2013, the Institute of Medicine convened a group of patients and experts to discuss, and raise awareness of, the need to engage patients fully as partners in our efforts to achieve quality care while containing costs. Concurrently, a number of national information infrastructure initiatives are targeting increased patient engagement and the design of health information systems that improve the availability of health information and integrate it in meaningful ways for patients. So far, these technology goals have been advanced primarily through the design of personal health records (PHRs), patient portals, electronic health records (EHRs), and health information exchanges (HIEs). However, we remain far from achieving the goal of truly engaging patients in their care.
Generation and exchange of health data with patients is a requirement for Stage 3 EHR meaningful use incentives. Patients are entitled to an electronically generated copy of the record of their encounters with providers. Sharing provider-generated data with patients is expected to promote patient engagement and accountability, but our own experiences suggest that the data that are being shared are currently a mixed blessing. For example, one encounter report took the form of a 6-page document in which the vast majority of information was copied and pasted from previous encounters and in which there were several factual errors. The errors will be discussed with the provider during the next visit. Certainly the report got our attention; whether empowerment will result remains an open question. On another occasion, although the visit itself had included making decisions about future treatment, the plan was not mentioned in the document, leaving the patient to rely on her own memory and notes.
The National eHealth Collaborative Technical Expert Panel recommends fully integrating patient-generated data (e.g., home monitoring of daily weights, blood glucose, or blood pressure readings) into the clinical workflow of healthcare providers. A recent study found that the quality of patient generated data actually met or exceeded the quality and completeness of provider-generated data in emergency rooms (Porter, Forbes, Manzi, & Kalish, 2010). Whether this holds true for the chronically ill is unclear but, given that chronically ill must monitor and care for themselves on a regular basis and therefore have a vested interest in accurate reporting, it seems highly likely. Patients want to be able to review their data for accuracy and edit the data when necessary (and, as our earlier examples suggest, this may be needed with some frequency) (IOM, 2013). Patients also expect that their information will be kept secure and maintained as an enduring part of the Electronic Health Record (EHR) (IOM, 2013).
Although patients want this type of involvement, we have only begun to address their wishes and concerns. In the next sections, we summarize the current status of several potential building blocks to achieving patient engagement goals and emphasize the role of the nurse informaticist as fundamental to the process.
Sharing the EHR with patients has the potential to improve the safety of medication prescribing and trending of physiologic data (e.g., blood pressure, clotting times, blood glucose or daily weights), as well as to promote health and disease awareness. Patient portals (e.g., MyChart, Intellichart, Kaiser patient portal, and others) can serve as personal health records in which health information is preserved over time. Despite their promise, adoption of personal health records has not met expectations, perhaps in part because of a lack of integration of provider-collected data with patient-generated data. Furthermore, the adoption of a PHR is influenced by patients’ motivation for self-management and their technology literacy (Logue & Effken, 2012a). Logue and Effken (2o012a) outlined numerous environmental and behavioral barriers that older adults with chronic illness face in using a PHR, but also highlighted facilitators that promote PHR adoption. In a follow-up study, Logue and Effken (2012b) used the Personal Health Records Adoption Model (PHRAM) to explore the impact of the previously identified barriers and facilitators on younger and older seniors’ intent to use a PHR. Overall, younger seniors felt more positively about technology, had higher awareness of online health resources, and had systems in place to use PHRs, but indicated that family members’ influence outweighed that of their provider’s. By contrast, older seniors were less confident in their ability to use online PHRs and lacked the online resources to use them. The authors concluded that, since decision making involves weighing risks and benefits, strategies tailored at highlighting benefits and reducing risks of PHRs should improve their adoption.
Whether a patient is managing a chronic disease or trying to adhere to a diet, exercise, or complex monitoring regimen, mobile health applications (apps) can be used to engage and support them. Visit any app store and you will find a surprising number of health apps ranging from mobile EKG monitoring to calorie counters and fitness trackers. A number of health systems are developing and implementing their own apps in an effort to improve patients’ experiences in their organizations.
Up to 50% of medications taken for chronic disease are not taken as prescribed, with an economic cost approaching $100-289 billion per year (Viswanathan, Golin, Jones, et al, 2012). Yet today medication adherence apps are broadly available and often free (see, for example, Dosecast, Mango Health, MedCoach, MediPrompt, MediSafe, MedMory, MyMedSchedule, MyMeds, Pillboxie, PillMonitor, and Rxmind Me). One low cost solution to the medication adherence problem is to deliver medication reminders via smart phone apps or personally tailored text message (Arya, Alam & Zheng, 2013; Dayer, Heldenbrand, Anderson et al, 2013). These apps also could help patients tailor their discussions with clinicians during office visits, especially when discussing treatment options.
Telehealth enables clinicians to engage with patients in their homes using technology for monitoring, disease management and consultation. Compared to no continuing engagement post-hospitalization or institutionalization for skilled nursing care, telehealth is both cost-effective and feasible. Patients and their families using telehealth technology do need considerable education, as well as clinical and technical support. Of course not every patient is a candidate for telehealth. Either the patient or the home caregiver must be able to check in and upload data (vital signs, blood sugar, etc) on a regular schedule. If these data are abnormal (or if the patient or caregiver fails to report), the nurse will intervene. The intervention may take the form of a phone call, a call to the physician, or a home visit.
In telehealth, establishing the patient-clinician relationship is important to facilitate trust and promote self-care behaviors. As the telehealth nurse communicates with the patient, it is important to focus on shared understanding in contrast to shared information, with careful exploration of the extent to which the patient is engaging in self-care behaviors. Shea and Chamoff (2012) found that it was not the communication frequency between the telehealth nurse and the patient that related to health behavior change, but the explicit sharing of goals and intentions for integrating the technology into their daily life to optimize health. Videoconferencing can be used to convey both verbal and nonverbal communication, it can be used to establish and reinforce trust that a nurse really is on the other end of the technology reviewing the data and providing timely feedback. If technologies like Skype or Facetime are used, ensuring a secure, HIPAA compliant interface is paramount to avoid violation penalties.
Providing decision support to the patient based on telemonitoring values is another powerful opportunity for HIT to engage patients. Seto and colleagues (2012) tested an expert clinical decision support system for heart failure, with alerting directed at both patients and clinicians. Alerts and recommendations were delivered to patients based on inputs to the system for weight, blood pressure, heart rate and symptoms. The expert-validated heart failure rule system was then used to advise patients based on their symptoms (e.g. “Your measurements are fine today”; “If you feel worse use the system to take your symptoms”; “Contact the heart failure clinic if you think you should”; “Follow the doctor’s orders and take 40 mg Lasix now and restrict fluids and salt”; “Have someone drive you to the emergency department now”) (Seto et al, 2012, p. 561). In a randomized controlled trial of the system, intervention group patients (n = 50) had statistically significant improvements in quality of life, self-care maintenance, heart failure severity as measured by the Brain Natriuretic Peptide (BNP) values, self-care maintenance and management. Further, patients qualitatively reported a sense of empowerment when they received tailored feedback based on their telemonitoring readings.
Patients who receive individually tailored behavior change advice are nearly 20% more likely to change at least one risky health behavior compared to those who do not (Kreuter & Stretcher, 1996). Using a patient portal as a clearinghouse, health messages can be delivered via text messages, email, or automated telephone delivery. In a bidirectional health information exchange, the healthcare provider can be alerted to which messages are being delivered, and reinforce health messages when interacting with the patient. Spaced repetition (i.e., delivering a message at least four times in different forms that highlight unique aspects of the message), based on adult learning theory, can improve retention of motivational message content (Kolb, 1984).
Nurse informaticists are well equipped to create, test and deploy tools for patient engagement that provide value for patients, health systems, and clinicians. Trained in the tri-partite fields of nursing science, cognitive science and information science, nurse informaticists have the technical knowledge and clinical insight to identify gaps in current healthcare and propose solutions. To meet the goals of both patients and healthcare professionals, nurse informaticists incorporate users’ input from planning through evaluation of these systems so that they meet both provider and patient needs. Unfortunately, one of the continuing challenges to implementing usable, useful HIT has been the lack of informatics-trained nurses.
To increase patient adoption of health technology, the technology must be very easy to use. To that end, user interface design and evaluation are critical processes that informatics nurses must lead. Usability refers to the user (i.e. the patient in this instance), utility (does the system do what is intended) and usefulness (does the system add value) (Yen & Bakken, 2012). Use of consistent terms, displays and sequencing of information according to universal design principles allows for predictable and timely navigation through the system. Automatically synching information from one system (the EHR) into another (the PHR) and integrating information across providers (via health information exchange) maximizes the likelihood that information is complete and reconciled. For accurate input of data to occur and to reduce errors, the human interface must be designed for ease of use. The health data that devices output are only as good as the accuracy of the input. Bad data help no one. When health information systems “talk to another” via HL7 synchronized interfaces, the potential for this integration is maximized. Finally, equipment needs to be dependable, and support for computer problems should be accessible around the clock.
Evaluation of HIT for patients can be done by considering the 4 C’s: communication, care, control and context. Usability evaluation, as a fundamental and iterative process, is rooted in cognitive science and human factors engineering. As systems grow increasingly complex, evaluation methods must remain iterative (Kushniruk & Patel, 2004). It is important to communicate to the user (the patient) the benefit of the HIT tool, offer training and provide system support (e.g. help desk, telephone number, internet-based support). Control by patients can be supported by allowing continuous access to a patient portal, providing online patient education flexing to their knowledge, language and education level and making it convenient and low cost (e.g., via medication adherence or lifestyle support apps). Finally, considering the context for the patient is critical. Context awareness includes an assessment of their health literacy, technology literacy, motivation for change, availability and extent of social support, and severity of illness.
It is important for information sharing to be done in a secure fashion using encryption and password protection to comply with HIPAA requirements. Costs for violating HIPAA security laws are severe. Products supporting secure messaging are available, such as Virtual Care Works (see www.virtualcareworks.com), that provide secure feeds for email, text, file sharing and transfer (for health information exchange), and video conferencing. The nurse informaticist can ensure data and messaging security, with or without the help of a vendor-based solution, by ensuring messages are sent in encrypted form, are password protected and do not compromise individually identifiable health information. Backing up patient portal data in an offsite, HIPAA compliant, Tier III datacenter, with uptime reliability exceeding 99.9% is advisable. Addressing how data are secured in the offsite data center is similarly important. Data center security is strengthened with keycard protocols, biometric scanning protocols, and round-the-clock interior and exterior surveillance monitors restricting access. When patients access the patient portal or consent for secure text messaging communication, they should be asked to acknowledge a HIPAA privacy rule compliance statement.
To realize our national patient engagement goals, key issues of security, usability and evaluation must be addressed. Nurse informaticists are well positioned to take a leading role in this initiative. Nurse informaticists are fundamentally skilled in design, usability, and workflow effects of HIT. As nurses, they recognize the need for patient engagement and routinely advocate for patients to understand their disease to optimize their health. In collaboration with patients, other providers, and venders, nurse informaticists can improve our health outcomes and reduce the costs of healthcare by designing, implementing and evaluating health information technology that enables patients to easily and effectively participate as full partners in their own health care.
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