Patient engagement is not a new concept. Service industries have been providing their customers with information, tips, and other forms of communication attempting to engage their consumers. The value of patient engagement has evolved in the healthcare industry during the last two decades. Institute of Medicine formally introduced patient engagement in its report Crossing the Quality Chasm: A New Health System for the 21st Century in 2001. This report called for reforms to achieve a “patient-centered” care. The Institute of Medicine has further emphasized the value of patient engagement whereby individuals have the opportunity to access health data, enabling them to be the “source of control” in making healthcare decisions (Tang & Lansky, 2005). Patient engagement is defined by the World Health Organization as “the process of building the capacity of patients, families, care givers, as well as health care providers, to facilitate and support the active involvement of patients in their own care, in order to enhance safety, quality and people-centeredness of health care service delivery”(WHO, 2016). Patients are regarded as partners in care working together with members of their healthcare team to maintain and improve their own health and wellness. They are well-informed and actively participating in decision-making and self-care. With health information technology (HIT) usage continuing to increase, the technology becomes a powerful and critical tool for patient engagement. HIT is used to engage, educate, and empower patients by activating the role of patients in their own healthcare journey. Healthcare providers are adopting new and innovative approaches to boost patient engagement in their care setting. With HIT, patient engagement can take on many forms, from patients accessing their own health data via patient portals, to discussing their treatment plan with their doctors through secure electronic messaging, to monitoring their own health activities using wearable devices. The primary driver of improved patient engagement is communication. The growing demand for improved and more efficient communication between healthcare providers and patients has created an impetus to use patient-facing technologies to promote patient engagement (Rozenblum, Miller, Pearson, & Marielli, 2015). Some of these tools give patients the opportunity to be more responsible for their care by providing them with the ability to access health data, choose care providers, and manage their healthcare. For example, patient portals allow patients to view, verify, and act on their health data from preferable access points outside of the traditional healthcare settings. Other tools allow patients to communicate directly with their healthcare provider, and interact with other patients with similar health conditions, creating a broader and more connected healthcare network. Another big driver of the patient engagement is the government policy such as U.S. federal government’s Office of the National Coordinator for Health Information Technology (ONC) Merit-Based Incentive Program (MIPS), which includes requirements for very basic patient engagement services, and the NHS England Patient and Public Participation Policy (NHS, 2017). ONC’s Meaningful Use Stage 2 requires that physicians provide patients the ability to view online, download and transmit their health information, generate and transmit permissible prescriptions electronically, and use secure electronic messaging to communicate with patients on relevant health information. Along with Meaningful Use, an equally important driver of the patient engagement trend has been the rise of accountable care models and payment reforms (Ivey, Shortell, Rodriguez & Wang, 2018). Under accountable care models, healthcare providers need to keep the patients well and helping them get better—as opposed to fees for services rendered. Thus, healthcare providers are looking for ways to engage patients in healthcare between visits to the doctor’s office. Benefits of patient engagement enabled by the technology include better enhanced communication, better care and improved outcomes, increased satisfaction, and lower costs (Roberts, Chaboyer, Gonzalez, & Marshall, 2017). Patient engagement improves communication between patients and providers. This facilitates the sharing of health and clinical data on both sides, and provides a means for shared decision-making. Enhanced communication leads to better care, improved outcomes, and patient satisfaction. When patients are given access to their health data as well as treatment information, they are better able to participate in their care. Patient’s participation gives providers more information about the patient’s condition and helps them make better decisions. Increased ability to monitor patients’ health condition enables early intervention, and possibly lower emergency room visits and hospitalizations. Easy access to their health data and the ability to interact with their healthcare providers give patients a sense of empowerment. This helps to increase their overall satisfaction with the care provided and outcomes of such care, which is a major component of value-based payment. Time and money can be saved by scheduling appointments using the patient portal. Appointment reminders not only increase patient satisfaction, but also reduce cancellations and no-shows. Increased patient satisfaction results in the practice being able to maintain and grow its patient base. Hibbard and Greene (2013) reviewed the available evidence of the contribution of patient engagement to health outcomes, and costs. It was found that patients who are more activated have better health outcomes and care experiences. Engaged patients are more likely to take preventative measures like having regular health checkups, screenings, and immunizations. They are also more likely to eat healthy, exercise regularly, and avoid risky behaviors like smoking. This led to fewer illnesses. The highly engaged person living with a chronic illness is more likely to take their medications as prescribed and consistently engage in self-care and self-monitoring behaviors. This led to fewer complications and fewer emergency admissions to the hospital. Even though it was found that highly engaged patients experience fewer hospitalizations and emergency room visits, there is limited evidence to date about the impact on costs. Baker reviewed case studies of patient engagement for health system improvement across organizations in four different countries (Baker, 2014). He concluded that there are considerable variations in the approaches adopted by healthcare organizations to patient engagement and patient and family-centered care. However, providing patient and family-centered care and improving patients’ experiences with their care are important goals of healthcare organizations. Patient engagement is a key to improvements in these goals at provider, and organizational levels. Patient engagement may be an important catalyst for improving patient outcomes and organizational performance, but additional evidence is needed to understand patients’ experiences of the engagement process and whether these outcomes translate into improved quality of care (Bombard et al., 2018). Some of the latest technologies focusing on patient engagement involve managing patient health data, managing communication with healthcare providers, selfcare at home, and education. A survey conducted by the New England Journal of Medicine identified five tools to help healthcare providers improve patient engagement: biometric wireless devices, apps for smartphones, SMS appointment reminders, social media as a patient education tool, and medication adherence reminder (Volpp & Mohta, 2017). Specifically, 85% of respondents reported that biometric wireless devices, such as wireless glucometers that are able to collect patient health data and transfer it to an EHR, offer significant benefit in patient engagement especially in the area of population health. Seventy-five percent of respondents reported that healthcare apps for smartphones could offer a significant benefit in patient engagement. An app could be used to help patients manage their medications which could be particularly useful for patients with chronic conditions. Seventy percent of respondents indicated that SMS-based appointment reminders systems were identified as the most effective tool for patient engagement. Connections through social media can be used as a way to encourage patient engagement and improve health behaviors. Eighty-five percent of respondents indicated that social networks are potentially useful in healthcare delivery, especially for chronic disease management (85% of respondents) and promotion of healthy behaviors such as weight management, physical activity, and healthy eating (78%). Sixty-six percent of the respondents indicated that medication adherence reminders communicating with the patients as the applications best suited for patient engagement technology tools. Data collected by WHO indicate that about half of the patients with chronic diseases do not take their medication as prescribed (WHO, 2003). Accordingly, tools that can remind patients to take their medications can provide significant benefits in improving patient population health. All of these technologies are useless if the patient does not take an active role in his or her health. According to a 2018 Survey of U.S. consumers, about a third of consumers are interested in using apps for identifying symptoms, for health coaching, and for recognizing the mood (Betts & Korenda, 2018). Many consumers are comfortable using at-home tests, mobile devices, and related technologies to diagnose, monitor, and manage their health problems. For instance, 51% are comfortable using an athome test to diagnose infections, 45% using an at-home genetic test to identify existing or future health risks, and 44% using an at-home blood test that connects to an app to track overall health trends (for instance, cholesterol and fasting blood glucose). The use of technology such as Web sites, smartphones/tablet apps, and personal medical devices to monitor health and measure fitness levels has increased. For instance, the use of technology to measure fitness levels has increased from 17% in 2013 to 42% in 2018 and the use of technology to monitor health issues has increased from 15% in 2013 to 27% in 2018. Sixty percent of the surveyed consumers indicated that they are willing to share personal health data (generated from wearable devices) with their doctors to improve their care. Patient engagement can be applied in myriad healthcare practices and in healthcare education/training for medical personnel. Engaging patients and their families in healthcare is an important endeavor in all parts of the world. Unfortunately, however, a large gap persists between its actual implementation and recognition of its importance. According to WHO, patient engagement encompasses the following (WHO, 2016): • Collection of information about patient experiences and care outcomes • Healthcare education and training • Design and development of patient-centered processes and systems • Patient engagement in policy development • Patients’ access to their own electronic health records • Educating and empowering people to recognize their health needs and seek healthcare in a timely manner This section provides examples and explanation additional to the WHO’s explanation (WHO, 2016). Collection of information about patient experiences and clinical outcomes often serves as a starting point for developing relationships with patients. Such information can be collected through surveys, informal online feedback, interviews, or focus group discussions. Feedback on patient experiences leads to knowing their needs, preferences, and values, which helps improve the quality and safety of care. For example, knowing patients felt they spent too long in the outpatient clinic is a means of recognizing their sense of values and can impel action for avoiding such patients’ dropping out of treatment. Patient engagement also serves as a means of healthcare education or training. For trainees in healthcare, it is important to listen to actual patients’ experiences and thinking. This permits deep knowledge of the patient and maintaining trust between patient and clinician. These core values are essential for providing care with empathy, at a high level of quality, and with particular regard to safety. Encountering the patient’s story during training is a valuable experience and helps the trainee gain greater awareness of safety. For example, asking “Why is walking training difficult for you?” to patients undergoing rehabilitation provides information such as “I’m upset because it’s taking so long to get any benefit from rehabilitation” or “my left ankle really hurts.” Responses should be completely different based on these specifics. At the organizational level, it is useful, for example, to have patients and their families as advisory committee members, as they often positively impact the design and development of patient-centered processes and systems (Frampton & Patrick, 2008). Even after development and implementation, it is still useful to listen to and accumulate patients’ and families’ experiences and to feed this input back into the system. These efforts also enhance patient and family engagement. Engaging patients and families in policy development raises their awareness of diseases relevant to them. For example, patients can take part and assist in development and dissemination of medical tools, informational contents, and healthcare materials (de Silva, 2013). Patients and families can also participate in clinical research as data sources or as collaborators in research design, research planning, and implementation (Domecq et al., 2014). For instance, experiencing the difficulty of preparing, and taking part in tasting, food so as to provide feedback in development and validation of educational materials on dietary measures for diabetes can yield more practical and effective resources. The patients and families can also increase their awareness and skills for controlling the disease. Some developed countries have begun allowing patients access to their electronic medical records. Patients’ personal involvement in monitoring or updating dosage or treatment plans may not only increase harmony between the clinicians’ and patients’ treatment policies, but also impel a review or intervention by the healthcare professional. In the United States, the delivery of personal health record data to patients via the Blue Button system has proven to be an effective strategy. In low-income, resource-poor countries, engaging the patient and family can begin by having them be educated and empowered to understand their health needs and seek healthcare at appropriate timing. It is also important that patients and families ask questions and discuss their concerns. Their involvement in design and development of tools helps deepen their understanding of health and disease, while promoting use of related tools. We have been conducting clinical research on health checkups in rural Bangladesh. One finding from this work was that explaining health checkup results to people who thought obesity was a symbol of family wealth educated them that it is actually a health threat (Nohara et al., 2015). Online Patient Community (OPC) is a subtype of Online Health Community (OHC), for its main users are patients or their relatives, though medical staff may play the role of a counselor or an organizer. OPC is the earliest form which Internet involves in individual’s health, developed from online bulletin board service (BBS). Many OPCs are found in the 1990s, such as MedHelp and HealthBoards. OPC is widely used, according to a survey conducted by the Pew Research Center in the United States (Fox, 2014). Twenty-six percent of adult Internet users in the United States have read someone else’s health experience in the past 12 months. And 16% of adult Internet users have gone online in the past 12 months to find others who share the same health concerns. Behavior of OPC users can be classified into five categories: (1) seeking informational support, (2) providing informational support, (3) seeking emotional support, (4) providing emotional support, (5) and companionship (Wang, Zhao, & Street, 2017). Because of the openness of OPC, it is a great challenge for an ordinary user to distinguish the reliability. Through a study that collected questions posted to and the responses received from an online diabetes community, researchers found that value questions were most answered but some of them were incorrect, while fact question search results were the most clinically valid (Kanthawala, Vermeesch, Given, & Huh, 2016). According to the International Organization for Standardization (ISO) technical report of health informatics, personal health record (PHR) is defined as a type of health record. The key features of PHR are that it is under the control of the subject of care and that the information it contains is at least partly entered by the subject (consumer, patient) (ISO, 2012). PHR can contain a diverse range of data, including but not limited to (1) personal information, (2) insurance information, (3) medication records (allergies and adverse drug reactions, prescription record, medications and dosing, immunizations and the dates), (4) illnesses and hospitalizations records, (5) X-ray and lab reports, (6) consultation and special treatment reports, and (7) dental and vision records. As same as electronic health record (EHR) used in medical agencies, the data format of PHR should obey the universal standard to ensure the consistency during exchanging and transition. The ANSI/HL-7 EHR published by Health Level 7 (HL7) International is the first national standards for the exchange, integration, sharing, and retrieval of electronic health information (ISO, 2015). China has built the largest PHR system of the world, which contains health data of about 1 billion individuals, as a part of the National Essential Public Health Service (EPHS) (Zhang, Wang, & Wand, 2018). At some places which use the newest online PHR system, people can see their annual health checkup results with smartphone apps. The patient’s PHR can be updated at real time when he or she receives health checkup or treatment at a medical agency connected to the EPHS network (Xia, He, Chen, & Su, 2018). The rapid popularization of medical sensors and wideband network has provided technical possibility to the realization of remote patient monitoring and telemedicine with precise monitoring of physical parameters and stable transition of massive data. Remote patient monitoring is extremely helpful in the care of elder patients with chronic disease. A mattress embedded with piezoelectric sensor and matched with smartphone application can tell the user’s sleep quality according to heart rate, respiratory rate, and body movement during night (Tal, Shinar, Shaki, Codish, & Goldbart, 2017). A smart band can warn the nurse for possible fall accident when a sudden and short acceleration change of a patient is detected (Aud et al., 2010). Telemedicine can allocate medical resource to the area and population which the traditional medicine mode could not do with acceptable cost before. In Guizhou, a southwest province of China, 5000 suits of telemedicine system have been built in all small township hospitals and large general hospitals by the provincial Ministry of Health since 2016. A total of 23 thousand, 274 thousand, and 82 thousand cases of remote consultation, tele-diagnosis of images, and tele-diagnosis of electrocardiogram, respectively, have been conducted since the implementation of the project (Zhang, 2019). Considering the informational asymmetries between a patient and healthcare provider, a visit to hospital could be rather confusing and exhausted. To reduce the time and economic cost during medical service, hundreds of hospital-branded apps have been developed. Basic functions of a typical hospital-branded app usually include (1) helping patients make appointment of health checkup and meeting with doctor online, (2) navigation to and within the hospital, (3) communication and follow-up between patient and healthcare provider, (4) health education for patient, and (5) news of the hospital. Studies have shown that well-designed hospital-branded apps can significantly improve patient-reported convenience scores and satisfaction rate (Armstrong, Coyte, Brown, Beber, & Semple, 2017; Yoo et al., 2016). Moreover, hospital-branded apps can help patients and caregivers connect with their medical team and community in the treatment of specific diseases. EpiWatch, an Apple Watch app developed by The Johns Hopkins Epilepsy Center, allows adults with epilepsy to track their symptoms, seizures, medication, and potential triggers, and send the data to researchers (The Johns Hopkins Epilepsy Center, 2019). Researchers at the Massachusetts General Hospital (MGH) have developed the MGH Perinatal Depression Scale (MGHPDS), a free iPhone application that includes questionnaires about mood, anxiety, sleep, and stress at important time periods during and after pregnancy. The questionnaires will identify which specific symptoms are most critical in the diagnosis of PPD in women ages 18 to 45 who are pregnant or up to 12 weeks postpartum (The Ammon-Pinizzotto Center for Women’s Mental Health at MGH, 2019). Hospital-branded apps have brought great convenience to their users, medical staffs and the managers of hospital, but special notice should also be given to patients who have difficulty to use the technology, such as the elder population and the handicapped, in order not to make the barrier of information even higher for them. The spontaneous initiative of patient is crucial in the healthcare of chronic disease because it needs years of persistence, sometime the rest of one’s life. Patients with chronic disease have better performance in living healthy life style and higher compliance with treatment when they receive support from group or family (Gu et al., 2017). Being different from online patient community, social media is characterized with the immediacy of interaction and strong connection within certain user groups, so it is frequently incorporated into research programs to create a sense of community, group people around shared goals, and offer social and emotional support. When the weight management program and support network has delivered within Facebook group, effects on weight and metabolic syndrome risk factors in overweight and obese adults are obvious than those who received the same program in a booklet (Jane et al., 2017). Future research of social media, such as Facebook and Twitter, for chronic disease management may include (1) iterative content development with input from the target patient population, (2) further understanding of the potential role of key opinion leader, (3) ensuring the social media policies of healthcare institutions allow for real-time online communication, and (4) utilizing comprehensive evaluation strategies, including the use of process evaluations (Partridge, Gallagher, Freeman, & Gallagher, 2018). Direct-to-consumer (DTC) strategy is becoming critical in the business world for several reasons: (1) the demand of consumers for a better purchase experience; (2) DTC model gives companies an opportunity to build their brand relationship with customers, and (3) DTC model allows companies to collect customer data.
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Consumer Patient Engagement and Connectivity in Patients with Chronic Disease in the Community and at Home
INTRODUCTION
Key Drivers of Patient Engagement
Benefits of Improved Patient Engagement
State of the Art in Patient Engagement
AREAS FOR PATIENT ENGAGEMENT
Collection of Information about Patient Experience and Care Outcome
Healthcare Education and Training
Design and Development of Patient-Centered Processes and Systems
Patient Engagement in Policy Development
Patients’ Access to their Own Electronic Health Records
Educating and Empowering People to Recognize their Health Needs and Seek Healthcare in a Timely Manner
PATIENT ENGAGEMENT TECHNOLOGY
Online Patient Communities
Personal Health Records
Remote Patient Monitoring and Telemedicine
Hospital-Branded Apps
Social Media
Direct-to-Consumer Tools
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