Abstract
Background: As a result of digitalization, data is
available about almost every aspect of our lives.
Personal data collected by individuals themselves or
stored by organizations interacting with people is known
as a digital footprint. The purpose of this study was to
identify prerequisites for collecting and using digital
data that could be valuable for health data analytics and
new health services. Methods: Researchers and their
contacts involved in a nationwide research project
focusing on digital health in Finland were asked to
participate in a pilot study on collecting their own
personal data from various organizations of their own
choice, such as retail chains, banks, insurance
companies, and healthcare providers. After the pilot, a
qualitative inquiry was adopted to collect
semi-structured interview data from twelve active
participants in the pilot. Interviews comprised themes
such as the experiences of collecting personal data, as
well as the usefulness of the data in general and for the
participants themselves. Interview data was then analyzed
thematically. Results: Even if the participants had an
academic background and were highly motivated to collect
and use their data, they faced many challenges, such as
quite long delays in the provision of the data, and the
unresponsiveness of some organizations. Regarding the
usefulness of the acquired personal data, our results
show that participants had high expectations, but they
were disappointed with the small amount of data and its
irrelevant content. For the most part, the data was not
in a format that would be useful for health data
analytics and new health services. Participants also
found that there were actual mistakes in their health
data reports. Conclusions: The study revealed that
collecting and using digital footprint data, even by
knowledgeable individuals, is not an easy task. As the
usefulness of the acquired personal health data mainly
depended on its form and usability for services or
solutions relevant to an individual, rather than on the
data being valuable as such, more emphasis should be
placed on providing the data in a reusable form.
Original language | English |
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Article number | 139 |
Journal | BMC Medical Informatics and Decision Making |
Volume | 16 |
Issue number | 1 |
DOIs | |
Publication status | Published - 2016 |
MoE publication type | A1 Journal article-refereed |
Keywords
- digital footprint
- eHealth
- expectations
- experiences
- my data
- qualitative inquiry
- self-care