Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Sep 29, 2018
Open Peer Review Period: Oct 6, 2018 - Nov 15, 2018
Date Accepted: Mar 24, 2019
(closed for review but you can still tweet)
Creating Consumer Generated Health Data: Interviews and a Pilot Trial Exploring How and Why People Engage
ABSTRACT
Background:
Consumer Generated Health Data (CGHD) are any clinically relevant data collected by patients or their carers (consumers) that may improve healthcare outcomes. Like patient experience measures, this data reflects 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 healthcare providers.
Objective:
The aim of this study is to further identify how this data is used by consumers and how it influences engagement via a validated framework. Additionally, 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 ten 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 analysed using theme and content analysis.
Results:
Consumer generated health data 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 healthcare resources, data offers another tool to manage consumers service experience, especially the emotions associated with the healthcare 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. Lastly, it can also improve confidence and satisfaction in the service.
Conclusions:
This research demonstrates that in addition to the potential for enhanced clinical diagnosis and efficient use of healthcare resources, patient generated health data offers patients meaningful partnership with clinicians and a method of emotional empowerment, improving confidence and satisfaction in the service. Clinical Trial: ANZCTR: ACTRN12616000998448
Citation
Per the author's request the PDF is not available.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.