Dataset Information

Creating Consumer-Generated Health Data: Interviews and a Pilot Trial Exploring How and Why Patients Engage.

ABSTRACT:

Background

Consumer-generated health data (CGHD) are any clinically relevant data collected by patients or their carers (consumers) that may improve health care outcomes. Like patient experience measures, these data reflect the consumer perspective and is part of a patient-centric agenda. The use of CGHD is believed to enhance diagnosis, patient engagement, and thus foster an improved therapeutic partnership with health care providers.

Objective

The aim of this study was to further identify how these data were used by consumers and how it influences engagement via a validated framework. In addition, carer data has not been explored for the purpose of engagement.

Methods

Study 1 used interviews with CGHD-experienced patients, carers, and doctors to understand attitudes about data collection and use, developing an ontological framework. Study 2 was a pilot trial with carers (parents) of children undergoing laparoscopic appendectomy. For 10 days carers generated and emailed surgical site photographs to a tertiary children's hospital. Subsequently, carers were interviewed about the engagement framework. In total, 60 interviews were analyzed using theme and content analysis.

Results

This study validates a framework anchored in engagement literature, which categorizes CGHD engagement outcomes into 4 domains: physiological, cognitive, emotional, and behavioral. CGHD use is complex, interconnected, and can be organized into 10 themes within these 4 domains.

Conclusions

CGHD can instigate an ecosystem of engagement and provide clinicians with an enhanced therapeutic relationship through an extended view into the patient's world. In addition to clinical diagnosis and efficient use of health care resources, data offer another tool to manage consumers service experience, especially the emotions associated with the health care journey. Collection and use of data increases consumers sense of reassurance, improves communication with providers, and promotes greater personal responsibility, indicating an empowering consumer process. Finally, it can also improve confidence and satisfaction in the service.

SUBMITTER: Burns K

PROVIDER: S-EPMC6598415 | biostudies-literature | 2019 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Creating Consumer-Generated Health Data: Interviews and a Pilot Trial Exploring How and Why Patients Engage.

Burns Kara K McBride Craig A CA Patel Bhaveshkumar B FitzGerald Gerard G Mathews Shane S Drennan Judy J

Journal of medical Internet research 20190613 6

<h4>Background</h4>Consumer-generated health data (CGHD) are any clinically relevant data collected by patients or their carers (consumers) that may improve health care outcomes. Like patient experience measures, these data reflect the consumer perspective and is part of a patient-centric agenda. The use of CGHD is believed to enhance diagnosis, patient engagement, and thus foster an improved therapeutic partnership with health care providers.<h4>Objective</h4>The aim of this study was to furthe ...[more]

PMID: 31199312

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Dataset Information

Creating Consumer-Generated Health Data: Interviews and a Pilot Trial Exploring How and Why Patients Engage.

Background

Objective

Methods

Results

Conclusions

Publications

Creating Consumer-Generated Health Data: Interviews and a Pilot Trial Exploring How and Why Patients Engage.

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