A Method for Understanding Some Consequences of Bringing Patient-Generated Data into Health Care Delivery

Steward, Duane; Hofler, Richard A.; Thaldorf, Carey; Milov, David E.

doi:10.1177/0272989x10371829

Cited by 11 publications

(7 citation statements)

References 4 publications

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“…We highlight some of these issues that must be addressed when making PGHD part of the formal clinical care process. Our work contributes to a nascent body of research identifying what motivates patients to collect data about themselves [39] and also how these data might be useful in clinical care [20,22,40-43]. …”

Section: Discussionmentioning

confidence: 99%

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

et al. 2016

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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.

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Section: Discussionmentioning

confidence: 99%

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

et al. 2016

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“…Health care providers have expressed concerns over the potential added burden of reviewing PGHD outweighing any potential for added efficiencies [3]. In a simulation study to understand changes to a health system when PGHD are added into the clinical workflow, researchers identified indirect consequences of additional time and cognitive demand, increase in labor cost with additional time required to assimilate PGHD [7]. Workdays and patient visits were extended and became less predictable, with nurse utilization rates increasing while physicians' remained relatively unchanged.…”

Section: The Clinical Workflowmentioning

confidence: 99%

Personal Health Informatics: New Tools and Roles for Health Care

Demiris

2022

Studies in Health Technology and Informatics

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Technological advancements have introduced wearable and passive monitoring tools that can capture aspects of daily living, health and well-being in homes and communities. Personal Health Informatics is the study of any information system, tool or platform designed for individuals and their families/ communities with the goal to facilitate decision making, access to information, education, managing health, prevent disease, and improve communication whereby the individual patient or consumer is the end user whose needs and preferences inform the design and implementation of the system. Examples of such tools include digital phenotyping, consumer genomics and smart homes. Such platforms capture patient generated health data and allow for proactive models of care, whereby patterns or trends are analyzed to identify opportunities for tailored interventions. Future research needs to address the impact of personal health informatics systems on health outcomes, shared decision making and patient empowerment. We discuss new roles and opportunities that arise with the growth of this field, including the role of the personal health data navigator who can guide and assist patients and families in navigating the complex digital landscape in order to most effectively utilize inclusive personal health informatics tools.

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“…The cognitive demand, increase in labor cost and additional time to assimilate PGHD are all important considerations in data analysis and interpretation. 46 In most published studies it is difficult to assess precise data storage formats. Some have integrated with REDCap or similar data collection tools.…”

Section: Data Analysis and Interpretationmentioning

confidence: 99%

“…Although intended to bridge a gap to complement clinic visits, PGHD can also have voluminous data that can stymie potential efficiencies. The cognitive demand, increase in labor cost and additional time to assimilate PGHD are all important considerations in data analysis and interpretation 46 . In most published studies it is difficult to assess precise data storage formats.…”

Section: Introductionmentioning

confidence: 99%

Patient generated health data and electronic health record integration in oncologic surgery: A call for artificial intelligence and machine learning

Melstrom

Rodin

Rossi

et al. 2020

Journal of Surgical Oncology

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In this review, we aim to assess the current state of science in relation to the integration of patient-generated health data (PGHD) and patient-reported outcomes (PROs) into routine clinical care with a focus on surgical oncology populations. We will also describe the critical role of artificial intelligence and machine-learning methodology in the efficient translation of PGHD, PROs, and traditional outcome measures into meaningful patient care models.

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A Method for Understanding Some Consequences of Bringing Patient-Generated Data into Health Care Delivery

Cited by 11 publications

References 4 publications

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

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

Personal Health Informatics: New Tools and Roles for Health Care

Patient generated health data and electronic health record integration in oncologic surgery: A call for artificial intelligence and machine learning

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