Present and Future Trends in Consumer Health Informatics and Patient-Generated Health Data

Abstract

SummaryObjectives: Consumer Health Informatics (CHI) and the use of Patient-Generated Health Data (PGHD) are rapidly growing focus areas in healthcare. The objective of this paper is to briefly review the literature that has been published over the past few years and to provide a sense of where the field is going. Methods: We searched PubMed and the ACM Digital Library for articles published between 2014 and 2016 on the topics of CHI and PGHD. The results of the search were screened for relevance and categorized into a set of common themes. We discuss the major topics covered in these articles. Results: We retrieved 65 articles from our PubMed query and 32 articles from our ACM Digital Library query. After a review of titles, we were left with 47 articles to conduct our full article survey of the activities in CHI and PGHD. We have summarized these articles and placed them into major categories of activity. Within the domain of consumer health informatics, articles focused on mobile health and patient-generated health data comprise the majority of the articles published in recent years. Conclusions: Current evidence indicates that technological advancements and the widespread availability of affordable consumer-grade devices are fueling research into using PGHD for better care. As we observe a growing number of (pilot) developments using various mobile health technologies to collect PGHD, major gaps still exist in how to use the data by both patients and providers. Further research is needed to understand the impact of PGHD on clinical outcomes. KeywordsConsumer health information/methods; patient-generated health data; mHealth; user-computer interface; consumer participation in delivery of health careYearb Med Inform 2017:152-9 http://dx

A Systematic Review of Patient-Facing Visualizations of Personal Health Data

“…4,5 Patients can immediately visualize their PROs and other patient-generated health data (PGHD) easily and quickly through the same electronic systems, including smartphone applications and wearables. 6,7 The potential benefits of returning health data to the patient include increased comprehension of health status, engagement in care, and adoption of positive health behaviors. [8][9][10] As such, it represents an opportunity for the patient to become a more active participant in their health and wellbeing.…”

“…Nonetheless, there is reticence to allow patients direct access to their health data without clinician interpretation due to concerns about poor comprehension, risk perception, and possibly dangerous or unhealthy behaviors in response to the data. 7,11 Personal health information can be complex, especially when including numerous data points and medical jargon. It may also require contextualization based on age, gender, baseline status, and other personal characteristics.…”

Factors Influencing Sustained Engagement with ECG Self-Monitoring: Perspectives from Patients and Health Care Providers

“…[1][2][3] These data, termed patient-generated health data (PGHD), may include physiologic measures, symptoms, and lifestyle data. 4,5 PGHD has garnered excitement for its ability to uncover fluctuations in health-related factors that may play an important role in an individual's health and wellness. [6][7][8][9] PGHD also is valuable for centering care on the patient and their unique environmental, lifestyle, and biological circumstances.…”

Expanding Human Computer Interaction Methods to Understand User Needs in the Design Process of Personal Health Systems

“…We chose an exploratory, selective approach, instead of a comprehensive systematic review because researchers in the different fields classify their publications quite differently. For example in health informatics, researchers who work with people who manage their personal health utilize keywords such as "patient" or "consumer" [10]. However, researchers in human computer interaction rarely utilize these terms -instead they utilize keywords that note the action (e.g., self tracking, photo sharing, blogging), design method (e.g., participatory design, mixed methods), target population (e.g., family, HIV, eating disorder, children, chronic illness), or technology (e.g., social media, online health communities, Twitter).…”