Using Health Information Technology to Engage

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need to engage patients fully as partners in our efforts to achieve quality care while ... achieving patient engagement goals and emphasize the role of the nurse ... understanding in contrast to shared information, with careful exploration of ... user interface design and evaluation are critical processes that informatics nurses ...
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Using Health Information Technology to Engage Patients in their Care Issues, Impacts and Insights Column by Sheila M. Gephart, PhD, RN & Judith A. Effken, PhD, RN, FACMI, FAAN

CITATION Gephart, S. & Ef f ken, J. (2013). Using Health Inf ormation Technology to Engage Patients in their Care. Online Journal of Nursing Informatics (OJNI), 17 (3), Available at http://ojni.org/issues/?p=2848

COLUMN

Patient engagement, def ined 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 f ully as partners in our ef f orts to achieve quality care while containing costs. Concurrently, a number of national inf ormation inf rastructure initiatives are targeting increased patient engagement and the design of health inf ormation systems that improve the availability of health inf ormation and integrate it in meaningf ul ways f or patients. So f ar, these technology goals have been advanced primarily through the design of personal health records (PHRs), patient portals, electronic health records (EHRs), and health inf ormation exchanges (HIEs). However, we remain f ar f rom achieving the goal of truly engaging patients in their care. Generation and exchange of health data with patients is a requirement f or Stage 3 EHR meaningf ul 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 f orm of a 6-page document in which the vast majority of inf ormation was copied and pasted f rom previous encounters and in which there were several f actual errors. T he 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 f uture treatment, the plan was not mentioned in the document, leaving the patient to rely on her own memory and notes.

T he National eHealth Collaborative Technical Expert Panel recommends f ully integrating patient-generated data (e.g., home monitoring of daily weights, blood glucose, or blood pressure readings) into the clinical workf low of healthcare providers. A recent study f ound 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 f or the chronically ill is unclear but, given that chronically ill must monitor and care f or themselves on a regular basis and theref ore have a vested interest in accurate reporting, it seems highly likely. Patients want to be able to review their data f or accuracy and edit the data when necessary (and, as our earlier examples suggest, this may be needed with some f requency) (IOM, 2013). Patients also expect that their inf ormation 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 inf ormaticist as f undamental to the process.

HIT Patient Engagement Strategies Patient Portals and Personal Health Records (PHRs) Sharing the EHR with patients has the potential to improve the saf ety 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 inf ormation 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 inf luenced by patients’ motivation f or self -management and their technology literacy (Logue & Ef f ken, 2012a). Logue and Ef f ken (2o012a) outlined numerous environmental and behavioral barriers that older adults with chronic illness f ace in using a PHR, but also highlighted f acilitators that promote PHR adoption. In a f ollow-up study, Logue and Ef f ken (2012b) used the Personal Health Records Adoption Model (PHRAM) to explore the impact of the previously identif ied barriers and f acilitators on younger and older seniors’ intent to use a PHR. Overall, younger seniors f elt more positively about technology, had higher awareness of online health resources, and had systems in place to use PHRs, but indicated that f amily members’ inf luence outweighed that of their provider’s. By contrast, older seniors were less conf ident in their ability to use online PHRs and lacked the online resources to use them. T he authors concluded that, since decision making involves weighing risks and benef its, strategies tailored at highlighting benef its and reducing risks of PHRs should improve their adoption.

Mobile Health Strategies 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 f ind a surprising number of health apps ranging f rom mobile EKG monitoring to calorie counters and f itness trackers. A number of health systems are developing and implementing their own apps in an ef f ort to improve patients’ experiences in their organizations. Up to 50% of medications taken f or 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 of ten f ree (see, f or example, Dosecast, Mango Health, MedCoach, MediPrompt, MediSaf e, 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 & Z heng, 2013; Dayer, Heldenbrand, Anderson et al, 2013). T hese apps also could help patients tailor their discussions with clinicians during of f ice visits, especially when discussing treatment options.

Telehealth Telehealth enables clinicians to engage with patients in their homes using technology f or monitoring, disease management and consultation. Compared to no continuing engagement post-hospitalization or institutionalization f or skilled nursing care, telehealth is both cost-ef f ective and f easible. Patients and their f amilies using telehealth technology do need considerable education, as well as clinical and technical support. Of course not every patient is a candidate f or 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 f ails to report), the nurse will intervene. T he intervention may take the f orm of a phone call, a call to the physician, or a home visit. In telehealth, establishing the patient-clinician relationship is important to f acilitate trust and promote self care behaviors. As the telehealth nurse communicates with the patient, it is important to f ocus on shared understanding in contrast to shared inf ormation, with caref ul exploration of the extent to which the patient is engaging in self -care behaviors. Shea and Chamof f (2012) f ound that it was not the communication f requency between the telehealth nurse and the patient that related to health behavior change, but the explicit sharing of goals and intentions f or integrating the technology into their daily lif e to optimize health. Videoconf erencing can be used to convey both verbal and nonverbal communication, it can be used to establish and reinf orce trust that a nurse really is on the other end of the technology reviewing the data and providing timely f eedback. If technologies like Skype or Facetime are used, ensuring a secure, HIPAA compliant interf ace is paramount to avoid violation penalties. Providing decision support to the patient based on telemonitoring values is another powerf ul opportunity f or HIT to engage patients. Seto and colleagues (2012) tested an expert clinical decision support system f or heart f ailure, with alerting directed at both patients and clinicians. Alerts and recommendations were delivered to patients based on inputs to the system f or weight, blood pressure, heart rate and symptoms. T he expert-validated heart f ailure rule system was then used to advise patients based on their symptoms (e.g. “Your measurements are f ine today”; “If you f eel worse use the system to take your symptoms”; “Contact the heart f ailure clinic if you think you should”; “Follow the doctor’s orders and take 40 mg Lasix now and restrict f luids 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 signif icant improvements in quality of lif e, self -care maintenance, heart f ailure 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 f eedback based on their telemonitoring readings.

HIT-enabled Delivery of Personally Tailored Health Messages 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 inf ormation exchange, the healthcare provider can be alerted to which messages are being delivered, and reinf orce health messages when interacting with the patient. Spaced repetition (i.e., delivering a message at least f our times in dif f erent f orms that highlight unique aspects of the message), based on adult learning theory, can improve retention of motivational message content (Kolb, 1984).

The Role of Nurse Informaticists in Supporting Patient Engagement

Nurse inf ormaticists are well equipped to create, test and deploy tools f or patient engagement that provide value f or patients, health systems, and clinicians. Trained in the tri-partite f ields of nursing science, cognitive science and inf ormation science, nurse inf ormaticists have the technical knowledge and clinical insight to identif y gaps in current healthcare and propose solutions. To meet the goals of both patients and healthcare prof essionals, nurse inf ormaticists incorporate users’ input f rom planning through evaluation of these systems so that they meet both provider and patient needs. Unf ortunately, one of the continuing challenges to implementing usable, usef ul HIT has been the lack of inf ormatics-trained nurses.

Table 1. St rat egies t o engage pat ient s using HIT

User Interf ace Design and Evaluation To increase patient adoption of health technology, the technology must be very easy to use. To that end, user interf ace design and evaluation are critical processes that inf ormatics nurses must lead. Usability ref ers to the user (i.e. the patient in this instance), utility (does the system do what is intended) and usef ulness (does the system add value) (Yen & Bakken, 2012). Use of consistent terms, displays and sequencing of inf ormation according to universal design principles allows f or predictable and timely navigation through the system. Automatically synching inf ormation f rom one system (the EHR) into another (the PHR) and integrating inf ormation across providers (via health inf ormation exchange) maximizes the likelihood that inf ormation is complete and reconciled. For accurate input of data to occur and to reduce errors, the human interf ace must be designed f or ease of use. T he health data that devices output are only as good as the accuracy of the input. Bad data help no one. When health inf ormation systems “talk to another” via HL7 synchronized interf aces, the potential f or this integration is maximized. Finally, equipment needs to be dependable, and support f or computer problems should be accessible around the clock. Evaluation of HIT f or patients can be done by considering the 4 C’s: communication, care, control and context. Usability evaluation, as a f undamental and iterative process, is rooted in cognitive science and human f actors 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 benef it of the HIT tool, of f er 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 f lexing to their knowledge, language and education level and making it convenient and low cost (e.g., via medication adherence or lif estyle support apps). Finally, considering the context f or the patient is critical. Context awareness includes an assessment of their health literacy, technology literacy, motivation f or change, availability and extent of social support, and severity of illness.

Security and Consent It is important f or inf ormation sharing to be done in a secure f ashion using encryption and password protection to comply with HIPAA requirements. Costs f or violating HIPAA security laws are severe. Products supporting secure messaging are available, such as Virtual Care Works (see www.virtualcareworks.com), that provide secure f eeds f or email, text, f ile sharing and transf er (f or health inf ormation exchange), and video conf erencing. T he nurse inf ormaticist can ensure data and messaging security, with or without the help of a vendor-based solution, by ensuring messages are sent in encrypted f orm, are password protected and do not compromise individually identif iable health inf ormation. Backing up patient portal data in an of f site, HIPAA compliant, Tier III datacenter, with uptime reliability exceeding 99.9% is advisable. Addressing how data are secured in the of f site 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 f or secure text messaging communication, they should be asked to acknowledge a HIPAA privacy rule compliance statement.

Conclusions To realize our national patient engagement goals, key issues of security, usability and evaluation must be addressed. Nurse inf ormaticists are well positioned to take a leading role in this initiative. Nurse inf ormaticists are f undamentally skilled in design, usability, and workf low ef f ects of HIT. As nurses, they recognize the need f or patient engagement and routinely advocate f or patients to understand their disease to optimize their health. In collaboration with patients, other providers, and venders, nurse inf ormaticists can improve our health outcomes and reduce the costs of healthcare by designing, implementing and evaluating health inf ormation technology that enables patients to easily and ef f ectively participate as f ull partners in their own health care.

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Logue, M. D. & Ef f ken, J. A. (2012a). Modeling f actors that inf luence personal health records adoption. Computers, Informatics Nursing, 30, 354–362. Logue, M. D., & Ef f ken, J. A. (2012b). An exploratory study of the personal health records adoption model in the older adult with chronic illness. Informatics in Primary Care, 20(3), 151-169. Porter, S. C., Forbes, P., Manzi, S., & Kalish, L. A. (2010). Patients providing the answers: Narrowing the gap in data quality f or emergency care. Quality and Safety of Health Care, 19(5), e34. doi: 10.1136/qshc.2009.032540 Seto, E., Leonard, K. J., Caf azzo, J. A., Barnsley, J., Masino, C. & Ross, H. J. (2012). Developing healthcare rule-based expert systems: Case study of a heart f ailure telemonitoring system. International Journal of Medical Informatics, 81(8), 556-565. Shea, K. & Chamof f , B. (2012). Telehomecare communication and self -care in chronic conditions: Moving toward a shared understanding. Worldviews on Evidence-based Nursing, 9(2),109-116. Viswanathan, M., Golin, C. E., Jones, C. D., Ashok, M., Blalock, S. J., Wines, R. C. M., … Lohr, K. N. (2012). Interventions to improve adherence to self -administered medications f or chronic diseases in the United States: A systematic review. Annals of Internal Medicine, 157(11), 785–795. doi:10.7326/0003-4819-157-11201212040-00538 Yen, P. Y., & Bakken, S. (2012). Review of health inf ormation technology usability study methodologies. Journal of the American Medical Informatics Association, 19 (3), 413-422. doi: 10.1136/amiajnl-2010-000020

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