Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Feb 19, 2019
Open Peer Review Period: Feb 19, 2019 - Apr 4, 2019
Date Accepted: Jul 19, 2019
(closed for review but you can still tweet)
The second generation of e-patients - An interview study to understand what drives them
ABSTRACT
Background:
The first generation of e-patients were equipped, empowered, enabled, and engaged patients and informal caregivers, who used the Internet for finding information or for communication, to solve a personal need. There is however a lack of knowledge about e-patients’ driving forces for engaging in their own health and care. This knowledge could be used to include patients’ care experiences to improve the care delivery process.
Objective:
The aim of this study was to explore the driving forces of e-patients to be actively engaged in their health and care, and how different eHealth solutions could be supportive in these processes.
Methods:
Semi-structured interviews with ten chronic patients and five informal caregivers were conducted. An online advertisement resulted in 67 individuals expressing an interest to participate. From these, 15 respondents were purposefully selected to guarantee broad coverage regarding age, gender, chronic condition, type of engagement and geographical distribution. Data were analysed according to the Framework Analysis approach, using the three concepts of the Self Determination Theory, namely autonomy, relatedness, and competence as outset.
Results:
The driving forces of e-patients were described as needs and motivation for being actively engaged. As an internal driving force, the motivation was expressed mainly as feeling relatedness. This is connected to the external driving forces; where the main needs were expressed as a necessity to work for an adaptable healthcare system, as well as to achieve communication with peers. The participants are using eHealth solutions for support when they are seeking information on-line and use social media as communication tools. They are also using techniques for self-tracking, apps for disabilities or to be involved with healthcare, writing blogs, accessing their medical records on-line, and programming their own solutions for their health-related needs. This result leads us to identify some differences between the first generation of e-patients and e-patients of today.
Conclusions:
The external driving forces of e-patients of today are described as needs to strive towards a more adaptable healthcare system, whereas the internal ones are described mainly in terms of relatedness to others. Like the first generation of e-patients, the participants frequently search for online information. However, the second generation of e-patients also uses self-tracking and produces their own data and new ideas of innovations to meet their health-related needs. To take advantage of the technical development is natural for the second generation of e-patients, even if the healthcare system is not prepared to meet them on these new terms.
Citation
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Copyright
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