Patient-generated Health Data Use Research Articles

Patient and Provider Perspectives About the Use of Patient-Generated Health Data During Pregnancy: Qualitative Exploratory Study.

There is increasing interest in using patient-generated health data (PGHD) to improve patient-centered care during pregnancy. However, little research has examined the perspectives of patients and providers as they report, collect, and use PGHD to inform obstetric care. This study aims to explore the perspectives of patients and providers about the use of PGHD during pregnancy, including the benefits and challenges of reporting, collecting, and using these data, as well as considerations for expanding the use of PGHD to improve obstetric care. We conducted one-on-one interviews with 30 pregnant or postpartum patients and 14 health care providers from 2 obstetrics clinics associated with an academic medical center. Semistructured interview guides included questions for patients about their experience and preferences for sharing PGHD and questions for providers about current processes for collecting PGHD, opportunities to improve or expand the collection of PGHD, and challenges faced when collecting and using this information. Interviews were conducted by phone or videoconference and were audio recorded, transcribed verbatim, and deidentified. Interview transcripts were analyzed deductively and inductively to characterize and explore themes in the data. Patients and providers described how PGHD, including physiologic measurements and experience of symptoms, were currently collected during and between in-person clinic visits for obstetric care. Both patients and providers reported positive perceptions about the collection and use of PGHD during pregnancy. Reported benefits of collecting PGHD included the potential to use data to directly inform patient care (eg, identify issues and adjust medication) and to encourage ongoing patient involvement in their care (eg, increase patient attention to their health). Patients and providers had suggestions for expanding the collection and use of PGHD during pregnancy, and providers also shared considerations about strategies that could be used to expand PGHD collection and use. These strategies included considering the roles of both patients and providers in reporting and interpreting PGHD. Providers also noted the need to consider the unintended consequences of using PGHD that should be anticipated and addressed. Acknowledging the challenges, suggestions, and considerations voiced by patients and providers can inform the development and implementation of strategies to effectively collect and use PGHD to support patient-centered care during pregnancy.

"What is Your Envisioned Future?": Toward Human-AI Enrichment in Data Work of Asthma Care

Patient-generated health data (PGHD) is crucial for healthcare providers' decision making, as it complements clinical data by providing a more holistic view of patients' daily conditions. We interviewed 20 healthcare providers in asthma care to envision future technologies to support their PGHD use. We found that healthcare providers want future artificial intelligence (AI) systems to enhance their ability to treat patients by analyzing PGHD for profiling risk and predicting deterioration. Despite the potential benefits of AI, providers perceived various challenges of AI use with PGHD, including AI-driven data inequity, added burden, lack of trust toward AI, and fear of being replaced by AI. Clinicians wished for a future of co-dependent human-AI collaboration, where AI will help them to improve their clinical practice. In turn, healthcare providers can improve AI systems by making AI outputs more trustworthy and humane. Through the lens of data feminism, we discuss the importance of considering context and aligning the complex human infrastructure before designing or deploying PGHD-based AI systems in clinical settings. We highlight the opportunity to design for human-AI enrichment, where humans and AI not only partner with each other for improved performance, but also enrich each other to enhance each other's work overtime.

Assessing Engagement With Patient-Generated Health Data Recording and Its Impact on Health Behavior Changes in Multicomponent Interventions: Supplementary Analysis.

BackgroundThe use and sharing of patient-generated health data (PGHD) by clinicians or researchers is expected to enhance the remote monitoring of specific behaviors that affect patient health. In addition, PGHD use could support patients’ decision-making on preventive care management, resulting in reduced medical expenses. However, sufficient evidence on the use and sharing of PGHD is lacking, and the impact of PGHD recording on patients’ health behavior changes remains unclear.ObjectiveThis study aimed to assess patients’ engagement with PGHD recording and to examine the impact of PGHD recording on their health behavior changes.MethodsThis supplementary analysis used the data of 47 postpartum women who had been assigned to the intervention group of our previous study for managing urinary incontinence. To assess the patients’ engagement with PGHD recording during the intervention period (8 weeks), the fluctuation in the number of patients who record their PGHD (ie, PGHD recorders) was evaluated by an approximate curve. In addition, to assess adherence to the pelvic floor muscle training (PFMT), the weekly mean number of pelvic floor muscle contractions performed per day among 17 PGHD recorders was examined by latent class growth modeling (LCGM).ResultsThe fluctuation in the number of PGHD recorders was evaluated using the sigmoid curve formula (R2=0.91). During the first week of the intervention, the percentage of PGHD recorders was around 64% (30/47) and then decreased rapidly from the second to the third week. After the fourth week, the percentage of PGHD recorders was 36% (17/47), which remained constant until the end of the intervention. When analyzing the data of these 17 PGHD recorders, PFMT adherence was categorized into 3 classes by LCGM: high (7/17, 41%), moderate (3/17, 18%), and low (7/17, 41%).ConclusionsThe number of PGHD recorders declined over time in a sigmoid curve. A small number of users recorded PGHD continuously; therefore, patients’ engagement with PGHD recording was low. In addition, more than half of the PGHD recorders (moderate- and low-level classes combined: 10/17, 59%) had poor PFMT adherence. These results suggest that PGHD recording does not always promote health behavior changes.

Patient-generated health data earn a seat at the table: clinical adoption during the COVID-19 transition to telemedicine.

Patient-generated health data (PGHD) have not achieved widespread clinical adoption. However, the COVID-induced shift to telemedicine may have created opportunities for PGHD as surrogates for vital signs collected in person. We assessed whether this shift was associated with greater ambulatory care PGHD use. We conducted an interrupted time series analysis of physician enrollment in, and patient-initiated vital sign transmission of non-COVID-associated PGHD through, a national PGHD platform (Validic). Ten health systems, 4695 physicians, and 51 320 patients were included. We found a significant increase in physician enrollment (slope change of 0.86/week, P = .02). Platform application programming interface calls continued their pre-COVID upward trend, despite large reductions in overall encounters. These findings suggest significantly greater pandemic-associated clinical demand for PGHD, and patient supply disproportionate to encounter rates. Increasing clinical use and ongoing efforts to reduce barriers, could help seize current adoption momentum to realize PGHD’s potential value.

Quality Assurance of Health Wearables Data: Participatory Workshop on Barriers, Solutions, and Expectations.

BackgroundThe ubiquity of health wearables and the consequent production of patient-generated health data (PGHD) are rapidly escalating. However, the utilization of PGHD in routine clinical practices is still low because of data quality issues. There is no agreed approach to PGHD quality assurance; therefore, realizing the promise of PGHD requires in-depth discussion among diverse stakeholders to identify the data quality assurance challenges they face and understand their needs for PGHD quality assurance.ObjectiveThis paper reports findings from a workshop aimed to explore stakeholders’ data quality challenges, identify their needs and expectations, and offer practical solutions.MethodsA qualitative multi-stakeholder workshop was conducted as a half-day event on the campus of an Australian University located in a major health care precinct, namely the Melbourne Parkville Precinct. The 18 participants had experience of PGHD use in clinical care, including people who identified as health care consumers, clinical care providers, wearables suppliers, and health information specialists. Data collection was done by facilitators capturing written notes of the proceedings as attendees engaged in participatory design activities in written and oral formats, using a range of whole-group and small-group interactive methods. The collected data were analyzed thematically, using deductive and inductive coding.ResultsThe participants’ discussions revealed a range of technical, behavioral, operational, and organizational challenges surrounding PGHD, from the time when data are collected by patients to the time data are used by health care providers for clinical decision making. PGHD stakeholders found consensus on training and engagement needs, continuous collaboration among stakeholders, and development of technical and policy standards to assure PGHD quality.ConclusionsAssuring PGHD quality is a complex process that requires the contribution of all PGHD stakeholders. The variety and depth of inputs in our workshop highlighted the importance of co-designing guidance for PGHD quality guidance.

MHealth and patient generated health data: stakeholder perspectives on opportunities and barriers for transforming healthcare.

Wearable devices, mobile health apps, and geolocation technologies place the ability to track, monitor and report data in the individuals' hands - or on their bodies. These innovations create an opportunity for "connected health," where individuals collect data outside of the healthcare encounter and report it to care providers. Collection of such patient-generated health data (PGHD) has the potential to impact the delivery of healthcare through remote monitoring, and by allowing patients and healthcare teams to provide targeted and efficient care that aligns with the health status of individual patients. To understand the value and barriers associated with clinical integration of PGHD we engaged a range of stakeholders, examining their perspectives and experiences of PGHD use. We conducted open-ended interviews with healthcare consumers (patients and care partners), healthcare providers, and healthcare administrators. Open recruitment and purposive sampling were utilized to identify participants that represented the breadth of PGHD use in research and clinical care. Interview guides focused on the value and barriers of PGHD use. Interviews were recorded, transcribed, and analyzed for emergent themes. Themes emerged around the value of PGHD to support care decisions and improve patient-provider communication and engagement, and the promise of applying PGHD to formal care pathways and measurement-based care. Significant barriers included data validity and actionability, and the burden of integrating PGHD into existing care processes. Interviews highlighted areas for future research to better understand how PGHD can advance care transformation. These findings provide rich context for understanding the experiences and needs of the individuals who interface with PGHD. Translating advances in technology and data tracking into successful clinical implementation requires understanding how stakeholders conceptualize and make use of PGHD, the potential value that PGHD can add to care, and the challenges that may limit PGHD's promise. Our results illustrate the value and challenges associated with health-system implementation of PGHD. Efforts to increase the scale and spread of PGHD will benefit from an approach that addresses the value and challenges PGHD brings to clinical care.

Use of patient-generated health data across healthcare settings: implications for health systems.

ObjectiveThe growing prevalence of chronic conditions requiring changes in lifestyle and at-home self-management has increased interest in and need for supplementing clinic visits with data generated by patients outside the clinic. Patient-generated health data (PGHD) support the ability to diagnose and manage chronic conditions, to improve health outcomes, and have the potential to facilitate more “connected health” between patients and their care teams; however, health systems have been slow to adopt PGHD use in clinical care.Materials and MethodsWe surveyed current and potential users of PGHD to catalog how PGHD is integrated into clinical care at an academic health center. The survey included questions about data type, method of collection, and clinical uses of PGHD. Current users were asked to provide detailed case studies of PGHD use in research and care delivery.ResultsThirty-one respondents completed the survey. Seventeen individuals contributed detailed case studies of PGHD use across diverse areas of care, including behavioral health, metabolic and gastrointestinal conditions, musculoskeletal/progressive functional conditions, cognitive symptoms, and pain management. Sensor devices and mobile technologies were the most commonly reported platforms for collection. Clinicians and researchers involved in PGHD use cited the potential for PGHD to enhance care delivery and outcomes, but also indicated substantial barriers to more widespread PGHD adoption across healthcare systems.ConclusionThe results of our survey illustrate how PGHD is used in targeted areas of one healthcare system and provide meaningful insights that can guide health systems in supporting the widespread use of PGHD in care delivery.

Electronic Patient-Generated Health Data to Facilitate Disease Prevention and Health Promotion: Scoping Review.

BackgroundDigital innovations continue to shape health and health care. As technology socially integrates into daily living, the lives of health care consumers are transformed into a key source of health information, commonly referred to as patient-generated health data (PGHD). With chronic disease prevalence signaling the need for a refocus on primary prevention, electronic PGHD might be essential in strengthening proactive and person-centered health care.ObjectiveThis study aimed to review and synthesize the existing literature on the utilization and implications of electronic PGHD for primary disease prevention and health promotion purposes.MethodsGuided by a well-accepted methodological framework for scoping studies, we screened MEDLINE, CINAHL, PsycINFO, Scopus, Web of Science, EMBASE, and IEEE Digital Library. We hand-searched 5 electronic journals and 4 gray literature sources, additionally conducted Web searches, reviewed relevant Web pages, manually screened reference lists, and consulted authors. Screening was based on predefined eligibility criteria. Data extraction and synthesis were guided by an adapted PGHD-flow framework. Beyond initial quantitative synthesis, we reported narratively, following an iterative thematic approach. Raw data were coded, thematically clustered, and mapped, allowing for the identification of patterns.ResultsOf 183 eligible studies, targeting knowledge and self-awareness, behavior change, healthy environments, and remote monitoring, most literature (125/183, 68.3%) addressed weight reduction, either through physical activity or nutrition, applying a range of electronic tools from socially integrated to full medical devices. Participants generated their data actively (100/183, 54.6%), in combination with passive sensor-based trackers (63/183, 34.4%) or entirely passively (20/183, 10.9%). The proportions of active and passive data generation varied strongly across prevention areas. Most studies (172/183, 93.9%) combined electronic PGHD with reflective, process guiding, motivational and educational elements, highlighting the role of PGHD in multicomponent digital prevention approaches. Most of these interventions (110/183, 60.1%) were fully automatized, underlining broader trends toward low-resource and efficiency-driven care. Only a fraction (47/183, 25.6%) of studies provided indications on the impact of PGHD on prevention-relevant outcomes, suggesting overall positive trends, especially on vitals (eg, blood pressure) and body composition measures (eg, body mass index). In contrast, the impact of PGHD on health equity remained largely unexplored. Finally, our analysis identified a list of barriers and facilitators clustered around data collection and use, technical and design considerations, ethics, user characteristics, and intervention context and content, aiming to guide future PGHD research.ConclusionsThe large, heterogeneous volume of the PGHD literature underlines the topic’s emerging nature. Utilizing electronic PGHD to prevent diseases and promote health is a complex matter owing to mostly being integrated within automatized and multicomponent interventions. This underlines trends toward stronger digitalization and weaker provider involvement. A PGHD use that is sensitive to identified barriers, facilitators, consumer roles, and equity considerations is needed to ensure effectiveness.

Patient generated health data use in clinical practice: A systematic review

BackgroundPrecision health calls for collecting and analyzing large amounts of data to capture an individual's unique behavior, lifestyle, genetics, and environmental context. The diffusion of digital tools has led to a significant growth of patient generated health data (PGHD), defined as health-related data created, gathered or inferred by or from patients and for which the patient controls data collection and data sharing. PurposeWe assessed the current evidence of the impact of PGHD use in clinical practice and provide recommendations for the formal integration of PGHD in clinical care. MethodsWe searched PubMed, Ovid, Embase, CINAHL, Web of Science, and Scopus up to May 2018. Inclusion criteria were applied and four reviewers screened titles and abstracts and consequently full articles. FindingsOur systematic literature review identified 21 studies that examined the use of PGHD in clinical settings. Integration of PGHD into electronic records was extremely limited, and decision support capabilities were for the most part basic. DiscussionPGHD and other types of patient-reported data will be part of the health care system narrative and we must continue efforts to understand its impact on health outcomes, costs, and patient satisfaction. Nursing scientists need to lead the process of defining the role of PGHD in the era of precision health.

Patient-Generated Health Data Quality for Clinical Use: Human and Technology Factors

Background: The proliferation of advanced wearable medical technologies is increasing the production of Patient-Generated Health Data (PGHD). However, there is lack of evidence on whether the quality of the data generated from wearables can be effectively used for patient care. In order for PGHD to be utilized for decision making by health providers, it needs to be of high quality, that is, it must comply with standards defined by health care organizations and be accurate, consistent, complete and unbiased. Although medical wearables record highly accurate data, there are other technology issues as well as human factors that affect PGHD quality when it is collected and shared under patients’ control to ultimately used by health care providers. Objective: This paper explores human factors and technology factors that impact on the quality of PGHD from medical wearables for effective use in clinical care. Methods: We conducted semi-structured interviews with 17 PGHD stakeholders in Australia, the US, and the UK. Participants include ten health care providers working with PGHD from medical wearables in diabetes, sleep disorders, and heart arrhythmia, five health IT managers, and two executives. The participants were interviewed about seven data quality dimensions including accuracy, accessibility, coherence, institutional environment, interpretability, relevancy, and timeliness. Open coding of the interview data identified several technology and human issues related to the data quality dimensions regarding the clinical use of PGHD. Results: The overarching technology issues mentioned by participants include lack of advanced functionalities such as real-time alerts for patients as well as complicated settings which can result in errors. In terms of PGHD coherence, different wearables have different data capture mechanisms for the same health condition that create different formats which result in difficult PGHD interpretation and comparison. Another technology issue that is relevant to the current ICT infrastructure of the health care settings is lack of possibility in real-time PGHD access by health care providers which reduce the value of PGHD use. Besides, health care providers addressed a challenge on where PGHD is stored and who truthfully owns the data that affect the feasibility of PGHD access. The human factors included a lack of digital health literacy among patients which shape both the patients’ motivation and their behaviors toward PGHD collection. For example, the gaps in data recording shown in the results indicate the wearable was not used for a time duration. Participants also identified the cost of devices as a barrier to the long-term engagement and use of wearables. Conclusions: Using PGHD garnered from medical wearables is problematic in clinical contexts due to low-quality data influenced by technology and human factors. At present, no guidelines have been defined to assess PGHD quality. Hence, there is a need for new solutions to overcome the existing technology and human-related barriers to enhance PGHD quality.

Integrating Patient-Generated Health Data Into Clinical Care Settings or Clinical Decision-Making: Lessons Learned From Project HealthDesign.

BackgroundPatient-generated health data (PGHD) are health-related data created or recorded by patients to inform their self-care and understanding about their own health. PGHD is different from other patient-reported outcome data because the collection of data is patient-driven, not practice- or research-driven. Technical applications for assisting patients to collect PGHD supports self-management activities such as healthy eating and exercise and can be important for preventing and managing disease. Technological innovations (eg, activity trackers) are making it more common for people to collect PGHD, but little is known about how PGHD might be used in outpatient clinics.ObjectiveThe objective of our study was to examine the experiences of health care professionals who use PGHD in outpatient clinics.MethodsWe conducted an evaluation of Project HealthDesign Round 2 to synthesize findings from 5 studies funded to test tools designed to help patients collect PGHD and share these data with members of their health care team. We conducted semistructured interviews with 13 Project HealthDesign study team members and 12 health care professionals that participated in these studies. We used an immersion-crystallization approach to analyze data. Our findings provide important information related to health care professionals’ attitudes toward and experiences with using PGHD in a clinical setting.ResultsHealth care professionals identified 3 main benefits of PGHD accessibility in clinical settings: (1) deeper 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, enabling revision of care plans for improved health goal achievement, while avoiding unnecessary clinic visits. Study participants also identified 3 areas of consideration when implementing collection and use of PGHD data in clinics: (1) developing practice workflows and protocols related to PGHD collection and use; (2) data storage, accessibility at the point of care, and privacy concerns; and (3) ease of using PGHD data.ConclusionsPGHD provides value to both patients and health care professionals. However, more research is needed to understand the benefit of using PGHD in clinical care and to identify the strategies and clinic workflow needs for optimizing these tools.