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Making it work for me: beliefs about making a personal health record relevant and useable
Fylan, F. Caveney, L. Cartwright, A.
Fylan, F.
Caveney, L.
Cartwright, A.
Publication Date
2018-06
End of Embargo
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© The Author(s) 2018. This article is distributed under the terms of the
Creative Commons Attribution 4.0 International License
(http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and
the source, provide a link to the Creative Commons license, and indicate if changes were made.
The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this
article, unless otherwise stated.
Peer-Reviewed
Yes
Open Access status
openAccess
Accepted for publication
2018-05-29
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Abstract
Background: A Personal Health Record (PHR) is an electronic record that individuals use to manage and share their
health information, e.g. data from their medical records and data collected by apps. However, engagement with
their record can be low if people do not find it beneficial to their health, wellbeing or interactions with health and
other services. We have explored the beliefs potential users have about a PHR, how it could be made personally
relevant, and barriers to its use.
Methods: A qualitative design comprising eight focus groups, each with 6–8 participants. Groups included adults
with long-term health conditions, young people, physically active adults, data experts, and members of the voluntary
sector. Each group lasted 60–90 min, was audio recorded and transcribed verbatim. We analysed the data using
thematic analysis to address the question “What are people’s beliefs about making a Personal Health Record have
relevance and impact?”
Results: We found four themes. Making it work for me is about how to encourage individuals to actively engage with
their PHR. I control my information is about individuals deciding what to share and who to share it with. My concerns is
about individuals’ concerns about information security and if and how their information will be acted upon. Potential
impact shows the potential benefits of a PHR such as increasing self-efficacy, uptake of health-protective behaviours,
and professionals taking a more holistic approach to providing care and facilitating behaviour change.
Conclusions: Our research shows the functionality that a PHR requires in order for people to engage with it. Interactive
functions and integration with lifestyle and health apps are particularly important. A PHR could increase the effectiveness
of behaviour change apps by specifying evidence-based behaviour change techniques that apps should incorporate. A
PHR has the potential to increase health-protective behaviours and facilitate a more person-driven health and social care
system. It could support patients to take responsibility for self-managing their health and treatment regimens, as well as
helping patients to play a more active role when care transfers across boundaries of responsibility.
Version
Published version
Citation
Fylan F, Caveney L, Cartwright A et al (2018) Making it work for me: beliefs about
making a personal health record relevant and useable. BMC Health Services Research. 18:445.
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Article