Clinicians’ Perspectives in Using Patient-Generated Health Data to Improve Ischemic Heart Disease Management

Abstract

Patients suffering from ischemic heart disease (IHD) should be monitored closely after being discharged. With recent advances in digital health tools, collecting, using, and sharing patient-generated health data (PGHD) has become more achievable. PGHD can complement the existing clinical data and provide a comprehensive picture of the patient’s health status. Despite the potential value of PGHD in healthcare, its implementation currently remains limited due to the clinicians’ concern with the reliability and accuracy of the gathered data to support decision-making and concerns regarding the added workload that PGHD might cause to clinical workflow. The main objective of the study was to investigate the clinicians’ perspectives towards the use of PGHD for IHD management, focusing on data sharing, interpretation, and efficiency in decision-making. The study consists of semi-structured interviews with seven clinicians. Study results identified four main themes: data generation, data integration, data presentation, data interpretation and utilization in clinical decision-making.

Introduction

Ischemic heart disease (IHD), a type of chronic heart condition affecting about 16 million adults in the USA, is responsible for almost one-third of deaths in both developing and developed countries [1,2][3–5]. IHD, also called coronary artery disease (CAD), is responsible for acute events like myocardial infarction, also known as heart attack [6,7]. The treatments may include medication, procedures, and/or bypass surgery, which can be complex and costly. Patients with chronic conditions such as IHD often require continuous monitoring and care management rather than single interventions. Data collected outside the clinics can inform ongoing care management and provide essential insights into a patient’s health and well-being [1].

Patient-generated health data (PGHD) are health-related data created, recorded, or gathered to provide more profound insights into a patient’s condition. The patient is primarily responsible for creating or gathering PGHD to help address health concerns and usually includes health history, treatment history, biometric data, symptoms, and lifestyle choices [8]. It can better reflect a patient’s true health status and potentially provide value in healthcare delivery. Unlike traditional medical settings, where the healthcare providers collect and manage data within their offices, PGHD is collected outside clinical settings. PGHD allows the providers to expand their knowledge about the patients outside of clinical encounters, creating a more holistic view of patients outside the clinical setting that can inform better medical decision-making. Additionally, patients who use PGHD are more actively engaged in their care and better understand their health status [1]. Moreover, PGHD allows providers to track patients’ clinical information in real-time using applications and tools that record continuous data from the patient. Such applications help providers to monitor patient conditions from home and help the care team with real-time notification in case of medical emergencies [9,10]. Therefore, the health data shared by the patients can be utilized for real-time monitoring of ischemic heart patients, a valuable feature that can lead to more informed decisions and improve health outcomes [11–13]. Previous studies have examined the use of PGHD for monitoring specific health conditions, its potential role in improving patient engagement in care, and its use in clinical decision-making [11–15]. These studies emphasize that integrating PGHD into clinical care can facilitate an accurate and timely diagnosis and improve health care management. Our study examined the potential efficiencies of PGHD in IHD clinical workflow, capturing various aspects of respondents’ perceptions of using PGHD and organizing responses into common themes and outcomes.

PGHD is a valuable source of information for IHD and can help in improving patient-provider communication, patient engagement, and support care decisions [10]. In addition, PGHD can play a vital role in collecting the patient’s health data in real-time and can be linked to an intelligent system that can analyze the data to identify the risk factors to trigger an alert when necessary. Thus, PGHD in IHD can lead to early diagnosis, enhanced care, and reduced inefficiencies in the health care ecosystem [22]. As the healthcare industry moves towards patient-centered and value-based care, patient involvement and the incorporation of PGHD into practice will become imperative [19]. Despite the potential benefits of integrating PGHD into clinical workflow and decision-making, certain challenges may arise [11]. Healthcare providers are concerned about whether the patient-shared information is accurate and reliable in providing the healthcare team with efficient health information that supports clinicians’ decisions [17]. There are additional concerns that integrating PGHD into care delivery might create an additional workload for clinicians.

To address the aforementioned challenges, this study investigated clinicians’ perspectives and attitudes toward using PGHD in IHD management, focusing on data sharing, interpretation, and efficiency in decision-making for the cardiac health care team. The main reason for choosing IHD was that cardiac care is driven by data and requires continuous monitoring and care management. How easily clinicians can arrive at confident diagnoses depends on the quality and completeness of these data and how it is presented for their interpretation. Clinicians often rely on patient narratives, observations, and patient-reported outcomes during clinic visits to assess the efficacy of heart treatment and reach confident decisions [20]. Data collected between visits can better inform ongoing IHD care management and provide essential insights into a patient’s health and well-being [21]. Moreover, since the collection and use of PGHD can help patients be engaged in their own self-management as well as allow clinicians to monitor their symptoms of IHD remotely, cardiologists may be more likely to adopt and use PGHD as it supports ongoing, real-time monitoring and patient self-management. To understand the clinicians’ perspectives in using PGHD to improve IHD management, this study conducted semi-structured interviews to answer the following research questions: (1) what type of patient data would clinicians like to track for ischemic heart patients, (2) how do we integrate these data into a clinical workflow, (3) what are the clinicians’ preferences on the methods for data gathering, accessing, and visualizing, and (4) how useful and effective those data are in clinical decision making for the health care team?

Methods

For this study, qualitative data in the form of semi-structured interviews were collected from the University of Missouri (MU) Cardiology Clinic, Family Medicine, and Internal Medicine. The study was reviewed and approved by the MU Institutional Review Board (IRB #2010369 HS). The semi-structured interviews were designed with open-ended questions for guiding the discussion with a health care team to understand their perspectives about PGHD for IHD. In addition, the open-ended questions allowed further follow-up questions among the participants, which provided them with more opportunities to express their opinions fully. Moreover, interview questions were designed to elicit information regarding what type of data the health care professionals need to track for the ischemic heart patients, how would they like to access those health data, and what is the preferred methods for gathering, accessing, and visualizing the data? Overall, the interviews allowed the participants to evaluate the usefulness and effectiveness of those data in clinical decision-making for the health care team. A total of seven participants were recruited, including physicians (n=4), nurses (n=1), and clinical researchers (n=2). (Table 1) shows the participants’ information, including average professional experience, current roles, and specialty areas.

Table 1.

Participant summary for the study

Each interview was scheduled on a convenient date and time discussed prior with the respondent. The interviews took place at the University of Missouri Health Care, Columbia, MO. The duration of each interview was approximately 20 minutes, and the audio recordings of the interview were collected for the appropriate data transcription afterward. Thematic analysis (TA) was used to analyze the data and understand the clinicians’ attitudes towards PGHD sharing and interpretation. TA is the process of identifying patterns or themes within qualitative data. In addition, this method allows coding and theme development directed from the content of the dataset. It offers flexibility to the researchers to incorporate multiple theories applicable to research questions beyond individual experiences. TA consists of a six-step process (Figure 1) to identify, analyze, and report qualitative data seeking to provide insights into patterns and common themes across the qualitative data [22]. Subsequently, we assigned specific codes to identify the features of the data for each interview. These codes provide the context of the interviews with all the relevant data patterns. The codes are then combined to develop a potential theme of the data sets.

Figure 1.

Thematic Analysis phases

Results

The outcomes derived from the interview questions were organized into four main themes, including (1) data generation and data collection, (2) data integration, (3) data presentation (4) data interpretation and utilization in clinical decision-making. Figure 2 shows the flow of patient-generated health data in each of the four themes.

Figure 2.

PGHD model

1. Data Generation and Data Collection Tools

This theme focuses on seeking the participants’ opinions based on their experience on what type of healthcare data are more important to track and record for the patients diagnosed with IHD, as shown in Table 3. Blood pressure, weight, physical activity, and blood sugar were frequently mentioned as important data types to collect at home continually. All the participants agreed that blood pressure is the most important data to be tracked because hypertension is the most common cause of IHD and has been poorly controlled by the patients. Moreover, one participant pointed out that home blood pressure monitoring gives a more accurate reflection of one’s true blood than clinical blood pressure measurement.

It is important to measure blood pressure at home because clinical readings might not reflect a person’s true blood pressure.

Table 3.

Types of health to track at home

Health Data	Frequency	Percentage
Blood Pressure	7	100
Weights	6	85.71
Physical Activity	3	42.85
Blood Sugar	3	42.85
Pulse	2	28.57
Angina Episodes	2	28.57
Medication Adherence	2	28.57
Diet	1	14.28

The second important feature, according to the participants, was daily weight tracking at home. Participants noted that tracking daily weight is important because it is very common for people with heart failure to experience rapid changes in their weight. Weight gain could be a sign of fluid buildup in the body that might lead to heart failure because the heart is not pumping properly. Patients with an ischemic heart condition are recommended physical activity and exercises; the participants elicited the usefulness of developing a mobile application, smartwatch, or patient portal feature to allow these patients to track their physical activity. Participants also recommended providing educational videos on how to perform certain exercises and allowing patients to add daily tasks, goals, and progress using those applications. In addition, for diet recording, the applications should allow the patients to monitor weight, calories consumed, the number of carbohydrates they take, and the amount of water they drink, allowing monitoring of the nutritional value of daily food consumption. Patients might also have the option to connect to smart scales for automatic weight monitoring or the option to add weight data manually. When a discrepancy is detected regarding the nutritional value norms or the patient has too high a glycemic index in any meals, the physicians want to receive notifications and send recommendations on reading educational articles relevant to their conditions. Another health data that was highly recommended by the participants to be tracked was blood glucose, especially if the patient has diabetes or is taking insulin. Participants noted that self-monitoring of blood glucose data could help clinicians to consider signs of prediabetes when prescribing medications.

The participants stated that currently, there is no standardized way to collect and manage PGHD. However, with all the existing data collection methods, it could be useful to develop an application to collect and analyze real-time health data in a standardized manner to inform medical decisions effectively.

Having the patient go home and do their blood pressure recording, potentially using an app would help us. Currently, we do it in the written format during patient visits using survey scales while patients are waiting in the waiting room.

2. PGHD Integration and Accessibility

One important theme discussed with the participants was the integration of PGHD into care delivery and data accessibility at the point of care. Although the care teams believe that the access to PGHD collected from digital health applications, wearables, and in-home medical devices can lead to better remote patient management, the challenge lies in integrating PGHD without creating additional workload to the frontline clinicians. Therefore, it is crucial to provide effective remote patient management access while supporting more active clinical intervention. The health care professionals reported that they want the integration of PGHD in the EHR to make it easier to use and more accessible at the point of care. One clinician described her experience:

I would like that data to go right into our EMR to allow us to view the patient’s note and create a note for their visit. It’s a lot easier for me not to have to open a whole separate application. It would be nice to have that fall right into the rest of the data, such as labs, vital signs, diagnostic tests.

Moreover, participants emphasized that integrating technologies into care delivery without additional workload can help the clinical teams make the PGHD more acceptable in their workflow. Significant trends of the health-related data should be notified electronically to the health care team. It can be beneficial to take necessary actions for the patients.

As a provider, I may have hundreds of patients. So that’s what I mean is at some point, there have to be triggers or an alert system to notify me when I need to access the data. I wouldn’t access it until receiving a notification that a patient needs clinical intervention. It would be time-consuming to look at the data every day to try to figure out who’s in trouble.

The health care team identified data accessibility at the point of care, privacy, and confidentiality concerns of using PGHD as essential areas to consider when implementing health IT tools to assist patients with collecting PGHD. The health care professionals’ preference to have PGHD integrated with the EHR was mitigated by legal concerns related to patient privacy and data storage. When they share this data, the patients want to know that it is appropriately received and used by their providers, kept private, and secure in their EHR.

3. PGHD Presentation and Visualization

Meaningful display of the health data generated at home is essential, according to the participants. The data summary should be presented for meaningful display to ensure a complete understanding of the data. PGHD provided the health care professionals with data dashboards through Web-based platforms that collect, summarize, and visualize PGHD. The participants reported that the ability to sort or summarize data in a descriptive manner or graph it in different ways helped health care professionals see patterns more quickly in the data and extrapolate meaningful value from these data. Clinicians are not expected to study various PGHD records and make conclusions about the patients’ health status. Instead, technology is here to assist and notify clinicians in predefined cases, such as IHD. The system should constantly monitor patient health status to detect abnormalities. It should identify patterns and changes at a specific time interval or depend on other health factors for patients with an ischemic heart condition. In addition, it is essential to make clear data presentations that highlight abnormal values in different colors to help users identify any deterioration of the patient’s status within seconds as one participant expressed her opinion.

Clinicians don’t want to see daily weights; they want to see if the weight has been trending up or down. Something that takes all of those inputs and summarizes them into something that physician can quickly review. For example, a patient’s daily weight recording information goes into the provider’s health data analytics system. Suppose the trend indicates that the patient gains weight too quickly. The patient’s care team receives an automated notification about this change.

Most participants preferred graphical representation of the health data to help provide a more accurate picture of the patient’s health status and identify the upward or downward trends, including charts/graphs like a bar chart, pie chart, etc. As participants expressed their opinions:

Graphically represented data is easiest to understand and discuss with the patient to make medication changes or therapeutic changes. Graphical visualization can reduce the cognitive load and can help identify spikes and trends and tell you if things are falling either above or below a specific parameter. Graphical visualization can also make it easier to look at large pieces of data at a glance, unlike raw data, which can be hard to analyze and sort through. Graphs can represent fluctuation points and relevant trends and quickly identify the peak points or the low points and help you pinpoint the exact time or exact data you want to see.

4. Data Interpretation and Utilization in Clinical Decision Making

This section focuses on the usefulness of PGHD in clinical decision-making for the health care team. The essence of PGHD is to provide an insight to support clinicians’ decision-making process in developing a treatment plan and track post-discharge treatment progress. Participants reported that PGHD is aggregated and analyzed by the organization’s health data analytics system to process the results and compare them to previous measurements. Suppose the analysis uncovers negative trends in the patient’s health status, for example, a sudden or steady gain in daily weight, increased heart rate, systolic or diastolic blood pressure. In that case, it will automatically notify the care team about possible health risks.

Many participants consider engaging patients with IHD as vital in the decision-making to develop a treatment plan and track post-discharge treatment. Patients can track and share health data such as heart rate, rhythm, sleep, temperature, blood glucose, and blood pressure from home. Since clinicians mainly rely on the information presented during visits to the clinics, having access to PGHD data would lead to a better understanding of the health status of patients with IHD, especially when it comes to highly variable factors such as blood pressure readings.

We may be less available to see our patients as frequently as we would like as cardiologists. So, if you see the patient less frequently, then knowing what’s going on between the visits potentially, you can even instruct the patient to contact the office to make an earlier visit. If you notice if your blood pressure is constantly above a certain number, if your sugars are above a certain number constantly, if your weight goes up by three pounds, we would like to see you before the next scheduled visit. So, it may reduce symptoms, readmissions, and events.

Many participants identified monitoring patients more closely as a tool that can help reduce clinical events for post-discharge IHD patients. In addition, having customizable clinical metrics based on the users’ specific needs to reduce information overload can help in an emergent situation to provide the healthcare team with immediate guidance regarding the point of care.

Discussion

Utilization of PGHD in Clinical Workflow

Integrating PGHD into IHD workflow brings efficiencies that are essential for comprehensive cardiac care. PGHD can be generated by using different methods utilized in a patient’s day-to-day life outside of clinics. From the literature, digital health tools for collecting PGHD can be organized into three main methods. First, wearable devices allow people to track and collect different biometric data such as heart rate, pulse, blood pressure, and temperature. Second, mobile applications allow the patients to manually enter their information and track their lifestyle measurements such as physical activity, diet, and medications. Third, registered medical devices can track data, such as heart rate, blood glucose, and other biometric data, often through remote monitoring [10,13,14,23–29]. A technology that integrates as many of these methods as possible in a standardized way could help create a much fuller view of the patient’s condition for providers. However, implementing PGHD into the clinical workflow will bring challenges that need to be considered for its success. These include the volume of PGHD generated from the continuous monitoring can be significantly high, creating further information overload [17]. Also, the requirement of regular reviewing of the information will generate additional workload. Thus, this will bring the need for an incentive model for the providers [30]. In addition, the organizations need to consider appropriate levels of training for the clinical staff. Another challenge will be recruiting and enrolling patients into the PGHD program. Various approaches must be adopted to create enthusiasm, including face-to-face conversations during office visits and online interventions. Also, the objectives and expectations must be clearly communicated with the patients.

Efficiency of PGHD in Decision-Making

The quality and completeness of data are essential for clinical decision-making. From the providers’ perspective, as reported in our study findings, it is highly desired that the PGHD is integrated into the clinical workflow through the electronic health record (EHR) system. From the EHR development and maintenance perspective, maintaining a high volume of data in the EHR could be concerning. As a result, a middle-tier application might be utilized to reduce the data overload to the EHR system, but the clinical decision-making components such as alerting, summarizing, and visualization are integrated into the clinical workflow through the EHR system [31]. It is essential to recognize that the efficiency of PGHD in decision-making is highly reliable on the successful implementation of meaningful altering, summarization, and visualization. Our study findings pointed out that meaningful utilization can help early intervention and help control symptoms such as high blood pressure and reduce further health complications. For simplifying the interpretation and analysis of PGHD, providing a set of tools such as clinicians facing dashboard for sorting a panel of patients with higher risks needing immediate attention, methods for identifying significant values, or tools for visualizing data over time can help significantly boost the use of PGHD in the clinical decision-making process.

Remote Monitoring and Clinical Intervention

Health data analytics is key for monitoring a patient’s post-discharge recovery and preventing acute events or progression of chronic conditions such as IHD. PGHD enables clinicians to access health data and continuously monitor patients after being discharged from the hospital. For example, hypertension is closely linked to increased cardiovascular risk, and patients could have a condition known as white-coat hypertension, in which a patient’s blood pressure readings are higher when taken at the doctor’s office compared to other settings, such as at home. This may be attributed to factors such as the patients’ experience during medical appointments, tiredness from traveling, concern regarding medical costs, etc. [32,33]. EHR contains vitals, lab results, medical images, medications, procedures, and other data. The clinician can rely on these data to create the basis for a treatment plan. However, EHR is only the starting point. To reduce the risk of developing post-discharge acute events, providers can enable PGHD to complement the existing clinical data in the EHR. The health status of a patient can be tracked against a pre-established health goal between in-person clinical visits, thus enabling the real-time monitoring of the changes in the health status from day to day. Thus, real-time data can be used to identify the risk factors to trigger an alert and notify providers for early intervention. The results confirm that clinicians are interested in using technology that shows PGHD in the form of summarized data, identifies patterns and trends over time and notifies clinicians immediately to react proactively to adverse health events. Clinicians also believe that visualization and summary representation of the dataset would be beneficial for making better and more efficient clinical decisions. Effective monitoring of the health status based on the PGHD can ensure the timely identification of high-risk patients. It creates an opportunity for early intervention reducing complications, hospitalizations, and readmissions. However, more work is required for the efficacious implementation of PGHD-based remote monitoring, which relies on correctly identifying the characteristics of health systems, patient populations, and intervention designs [19].

Supporting Patient Engagement and Self-management

Integrating PGHD in cardiac care can substantially help patients to engage in their care planning and clinical decision-making. A study investigating the patient perspective on PGHD [34] reported the patient motivations for PGHD engagement. Some patients may set specific health goals and track their progress based on the health data. Research indicates PGHD is considered an effective tool to help increase patient health literacy, improve health consciousness and health behavior, which in turn enhances patients’ knowledge on health conditions and risks [34]. Aware of the health conditions and risks, patients and their family members can gain more control over patients’ health and recovery process. Additionally, the patients are more willing to provide the clinicians with any information that could be useful for effective diagnosis and care management. These data enable clinicians to adjust the treatment plan and help patients achieve better health outcomes [35]. One of the important challenges that health care providers need to consider is interrupted measurements and incomplete data. In addition, the patient engagement level is subject to the objectives for PGHD collection and may change with time. For example, if PGHD is collected for acute health care, a patient may be reluctant to share the health data after regaining the normal function [35]. Therefore, the changes in the level of patient engagement need to be assessed for the continuity of the participation.

Conclusion

Based on the study results, four main themes were identified: data generation and collection, data integration and accessibility, data presentation and visualization, data interpretation and utilization in clinical decision-making. Various aspects of PGHD were discussed in this study to highlight the efficiency of PGHD in IHD clinical decision-making. Also, the study discussed some challenges that might hinder PGHD implementation. The growth of consumer technologies, including mobile apps and wearable devices, has allowed patients to collect their health-related data outside of healthcare encounters. It can also lead to a significant increase in health-generated data. From a health informatics perspective, implementing digital health solutions can facilitate data collection, sharing and integration with healthcare system. This study emphasizes the importance of PGHD and the usefulness of the data in clinical decision-making. Incorporating PGHD into IHD clinical workflow can help clinicians develop a treatment plan and track post-discharge treatment progress. PGHD can also influence how patients with IHD report and monitor health conditions. Patients who contribute to PGHD are more actively engaged in their care and may have an increased understanding of their health status and influence how individuals report and monitor symptoms. Data collected outside of healthcare encounters can impact remote monitoring and provide a valuable source of information for ongoing IHD management. These generated data be liked to an intelligent system that can analyze the data to identify health factors. Also, the data should be summarized and graphically visualized to reduce the cogitative workload. Changes in patient’s health measurements and overall trends can be identified with automated push notifications in case of possible health risks. Additional research is needed to understand the patients’ perspective of PGHD. Also, more research is necessary to include clinicians from various departments.