Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients
Show others and affiliations
2019 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 21, no 8, article id e13022Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative.

OBJECTIVE: The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care.

METHODS: Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset.

RESULTS: Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them.

CONCLUSIONS: Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.

Place, publisher, year, edition, pages
2019. Vol. 21, no 8, article id e13022
Keywords [en]
consumer health informatics, eHealth, motivation, qualitative research, self-care
National Category
Other Medical Sciences
Research subject
Medical Informatics
Identifiers
URN: urn:nbn:se:uu:diva-391052DOI: 10.2196/13022ISI: 000482729200001PubMedID: 31418421OAI: oai:DiVA.org:uu-391052DiVA, id: diva2:1343577
Projects
Spetspatienter
Funder
Vinnova, 2017-01221Available from: 2019-08-17 Created: 2019-08-17 Last updated: 2019-10-16Bibliographically approved

Open Access in DiVA

fulltext(168 kB)10 downloads
File information
File name FULLTEXT01.pdfFile size 168 kBChecksum SHA-512
2e3b28b6b4f761005d69ac3fb964bb7140d9ce9e524423524b17ffb52b6cc349552a87d46d74605b4929bcc39c6d9a6dae6098a25e0fa8e84461961879520cda
Type fulltextMimetype application/pdf

Other links

Publisher's full textPubMed

Search in DiVA

By author/editor
Hägglund, Maria
By organisation
Clinical Psychology in Healthcare
In the same journal
Journal of Medical Internet Research
Other Medical Sciences

Search outside of DiVA

GoogleGoogle Scholar
Total: 10 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 23 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf