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.

Secondary care provider attitudes towards patient generated health data from smartwatches

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Medical Selfies: Emotional Impacts and Practical Challenges

“…when participants prioritize aesthetics over accurate representation of skin lesions. However, secondly, as posting selfies encourages patients to take ownership of their condition [11,52], the creation of aesthetic medical selfies should not be discouraged.…”

“…In addition to the direct role of medical selfies in supporting a patients physical treatment, several works have investigated positive impacts of the process on patients' mental state [11,43,52,63]. Tembeck [52] discusses the use of medical selfies as a form of self expression, enabling individuals to publicly identify themselves as living with illness, and to highlight its centrality to their daily life.…”

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