How Consumers Can Be More Active in Healthcare By The Use of Patient-Generated Health Data

Background

The world is currently experiencing a pandemic, and a lot of businesses have closed for an unknown number of months. The pandemic has also caused a lot of doctors' offices to shut down until further notice. Many physicians have resorted to using telemedicine to keep in contact with and monitor their patients, which is a great idea to some consumers, but not to those that depend on monthly visits with their primary care physician. During this time, patients are prompted to monitoring themselves by keeping track of daily activities. Patients can create their data and learn how to make better choices to control their overall health and become a more active partner in clinical decision making for their health care.

        The widespread adoption of electronic health records and the increasing prevalence of internet-enabled medical devices create even more opportunities for valuable data collection (McFarlane, 2019). As technology integrates into daily living, the lives of health care consumers are transformed into a critical source of health information, commonly referred to as patient-generated health data (PGHD; Nittas et al., 2019). Patient-generated health data is defined as health-related data created, recorded, or gathered by or from patients or family members, and caregivers to help address a health condition (McFarlane, 2019). Health data includes health and treatment history, symptoms, biometric data, and patient-reported outcome measures. Patient- generated health data differs from data generated in a clinical setting: (1) patients are responsible for capturing and recording data, (2) patients decide how to share or distribute the data to providers. Clinical data and PGHD used together can supply extra insight into an individual's complete health and better inform decision making by providers. The use and sharing of PGHD can gather valuable information about an individual's well-being between medical visits, allow for shared decision-making in preventive and chronic care management, and ultimately improve the cost, quality, and coordination of care (McFarlane, 2019). Patient-generated data creates an immoderate opportunity for consumers to become active partners in their health care.

What is Patient-Generated Health Data? 

        Patient-generated health data is patient-reported outcome data because the data collection is patient-driven, not practice- or research-driven (Cohen et al., 2016). On an individual level, the use of smart and wearable technology pushes the boundaries of self-quantification and generates novel opportunities to monitor and promote health (Maltseva & Lutz, 2018). The emergence of PGHD partially contributes to two dominant digitalization trends: the societal integration of mobile phones and the growing health-related use of web-based media (Visuri et al., 2017). Mobile phone applications and integrated sensors permit continuous measurement of physical, mental, social, and environmental health constant. Online media is becoming a place to communicate and deposit a large amount of data. The generation of one's health information might be a possible way to engage medically underserved populations and close long-lasting inequity gaps (Vangeepuram et al., 2018). The integration will gradually convert consumers from passive beneficiary to an active agent of their health care.  

Patient-generated data is a rapidly growing field where the availability and development of the technologies have, in many instances, outpaced the publication of trials designed to evaluate health outcomes, usability, interoperability, and benefits and harms of these technologies (AHRQ, 2019). For example, observation of daily life is a type of PGHD, which patients observe and record the patterns of their diet, physical activities, quality, and quantity of sleep, pain episodes, and even mood (Hill, 2009). By recording the data, the patient can manage their health condition in a more feasible way. Data collected between visits can inform ongoing care management and provide crucial insights into a patient's health and well-being. As technology advances and patients also become more actively engaged in producing their health data, the amount of health data provided grows substantially (Huba & Zhang, 2012). 

Patient-generated health data took on greater importance in recent years in medical practices and clinical studies. Patients and caregivers who depend on PGHD report that the methods have changed their approach to maintaining their health. Patients start asking new questions with newfound counter-information, seek second opinions, and reflect on the clinician's decisions in their health care. This level of engagement should help the patient feel empowered and in control of their health care. It's essential to have this confidence because now consumers can contribute to their overall health care with self-developed data. 

PGHD Benefits and Patient Outcomes 

        Between improving chronic disease management, boosting the Precision Medicine Initiative, and driving patient satisfaction, patient-generated health data has many healthcare benefits (Heath, 2016). Today, consumers get their information or store information about daily activities through mobile health applications that can be downloaded on any portable device. Utilizing a collection of mHealth apps helps patients collect their health data, which is integrated into their overall health file (Heath, 2019). Patient generated health data is more than adding information to the electronic health records; it's changing the way physicians interact with their patients outside a clinical setting. Three primary benefits that patient-generated health data brings to the scene are: improving chronic disease management, driving the precision medicine initiative, and empowering the patient to become more active in their health care. 

Improving chronic disease management was demonstrated in a blog post about a liver transplant survivor that used technology to help her better manage her health. Her experience highlights three key areas that stand out as opportunities to use data to make sure that patients have the best chance to make the most of this gift of life: transitions of care, coordinated care, and personalized care (Wittie & Myire, 2015). According to Donna Cryer, "One of the major advances in recent years is the availability of wearable and wireless devices and mobile applications to record and visualize the vast majority of my life spent outside the doctors' offices, (as cited in Wittie & Myrie, 2015). Cryer continued by stating, "Using these tools – a wireless scale and bracelet-style activity tracker – my doctors and I have been able to assess intervention effectiveness, adjust dosages, unearth side effects, and clarify decision points"(as cited in Wittie & Myrie, 2015). The patient also needed a knee replacement but wanted to delay if possible. Donna's physician administered a cortisone shot to relieve the pain. After receiving the chance, Donna was able to triple her steps per day and tracked this success on her activity tracker. Her and physician communicated using her generated health data to make a decision on another intervention if needed (as cited in Wittie & Myrie, 2015). By making the data work for her and her physician, she can now do better and feel confident in her data. 

Patient-generated health data plays a crucial role in the Precision Medicine Initiative (PMI). In a study conducted by the president of the United States on optimized treatment plans, a physician obtains the participants' data from wearable sensors and remote monitoring systems. This data enhanced the electronic health records that were already on file. Physicians were able to take a broad compilation of information and develop specialized medications for patients' treatment. The sharing of this data and patient engagement came to improve the flow of health data and communication between patients and providers. 

The affluence of data outside the health care setting is not always tangible. Empowering the patient is a rewarding experience and will help a patient’s confidence in their knowledge of medical information. Helping them feel in control and included is a contributor to making a difference in the quality of health care. Research has proven that consumers want to be more involved in their overall health care, especially patients with chronic illnesses. According to the Healthcare Information and Management Systems Society (HIMSS), patient-generated health data causes the patient to stake a factual claim in their healthcare and often inspires them to further engage in care (Heath, 2019). As health care progresses through the years and transitions more towards patient-centered care, health care professionals will need to encourage patient engagement to improve overall care and patient outcomes. 

Patient-generated Health Data and Healthcare Professionals 

Driving, listening, and coaching are essential skills that can make the clinician-patient interaction stronger and guide to an experience the patient can understand. Healthcare providers should want their patients to feel comfortable and confident with being involved in their treatment. If clients feel involved, they can always provide additional or new information in the next clinical visit. Providers found that reviewing the supplied data before the appointment can help prepare them for any situation. Providers also believed that the data could be used in five other categories, such as setting an agenda, assessing self-care activities, identifying patient barriers, understanding patients' perspectives, and increasing patient activation. 

Physicians have started to make use of mobile apps for their patients with chronic illnesses. A study by Athinlingam & Jenkins (2018) has reviewed a mhealth application that provided usable and efficient data to support self-care management for Heart Failure patients and to improve heart failure outcomes. self-care for Heart Failure requires patients to perform daily self-monitoring for changes in weight and symptoms, practice decision making for symptom changes, and adhere to prescribed medication, diet, physical activity, and follow-up care (Moser et al., 2012). For this technique, there must be education about the best practices of self-care management and how it is integrated into daily life. 

        Healthcare organizations identified three main benefits of PGHD accessibility in clinical settings: (1) more in-depth insight into a patient's condition; (2) more accurate patient information, particularly when of clinical relevance; and (3) insight into a patient's health between clinic visits, which enabled revision of care plans for improved health goal achievement while avoiding unnecessary clinic visits (Cohen et al., 2016). Data collected between visits can promote ongoing care management and issue insight in patient well-being. All data is stored in electronic health records (EHR), making it easier for healthcare providers to backtrack and integrate old information with the new. Providers did have some concerns using the data, but they are considering making use of the collected data in future clinical visits. 

Limitations 

      Several barriers have been recognized for the integrated use of health data provided by patients alone. The most common barrier was access to information technology in low-income and minority populations, which would limit the availability of patient-generated health data in patients who often needed it most and risk increasing health disparities (Nundy et al., 2014). Many studies have reported barriers and facilitators of electronic PGHD. These include, but are not restricted to: (1) data collection and use, (2) technical and design considerations, (3) ethics, safety, and trust, (4) user characteristics, and (5) context and content (Nittas et al., 2019). The five categories are vital to how confident a provider and patient feel about using this kind of data. Ethics, safety, and trust are crucial to credible information; always ensure that all data is confidential, reliable, and trustworthy. Electronic PGHD should be user-friendly and have assistance available to help the ones who are not technologically literate. Even though PGHD has limitations, a patient with an active role in health care will improve their knowledge and awareness.

Patients Use of Patient-generated Health Data 

There are two main ways to collect PGHD, passive and dynamic, and both allow consumers to be more active in health care. A passive PGHD generation will be less worrisome but have reduced interaction of consumer engagement. A dynamic PGHD generation takes more effort and will result in higher user motivation. Programs that involve consumer engagement has an elevated chance of being successful. Most of the studies identified in this project integrated electronic PGHD within multicomponent interventions by either complementing or facilitating other intervention components like enabling self-reflection, facilitating social comparison, informing counseling, and directing guidance (Nittas et al., 2019). The data was used in self-referencing, enabling individuals to keep track of health goals. 

        In addition to the role of PGHD in an analytical or predictive capacity, PGHD can be used to facilitate supportive interventions on clinical trials. Some types of PGHD are amenable to targeting through behavioral approaches, with subsequent effects that can be measured with PGHD streams such as physical activity, diet, and sleep patterns (Wood et al., 2015). This approach will optimize data efficiency, generate biological and clinical perception into behavior and treatment responses.

Conclusion 

        Patient-generated health data is rapidly growing and will always be a part of the healthcare system and will keep evolving as time goes on. The rise in PGHD production through the proliferation of health wearables is becoming an essential part of personalizing patient-centered care. Patient-generated Health Data could play a critical role in providing data to inform precision medicine initiatives (Abdolkhani et al., 2019). Patient-generated health data is said to be mostly used with mHealth through wearable devices. By the patient keeping track of health, it should motivate them to do better and feel confident during their next clinical visit. Patient-generated health data has the potential to contribute to the evolvement of health care quality and delivery. 

      Each section of this paper has given a different description of PGHD and its use in clinical practices. Patient-generated health data has played a role in contrasting disease self-care, and the patient data collected is integrated into clinical decision-making. The field of PGHD and related technologies remains new and is quickly changing based on the endless arrival of new devices, applications, and interfaces. The real value these technologies add to healthcare delivery continues to be seen (Rosenbloom, 2016).  

References

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