Abstract

BackgroundAs 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.MethodsResearchers 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.ResultsEven 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.ConclusionsThe 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-016-0378-0) contains supplementary material, which is available to authorized users.

Highlights

  • As a result of digitalization, data is available about almost every aspect of our lives

  • As our aim is to capture the dynamic nature of individual experiences in collecting, using, and sharing the digital footprint data, we follow the approach of Tronvoll et al [10], who suggest that research should involve the behavioral part of activities, interactions, experiences, processes, and relationships, and should be conducted together with the research object

  • Study design Pilot setting This study examines the experiences of a group of researchers and their contacts in collecting their own digital footprints

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Summary

Introduction

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. Individuals are developing an ever-increasing personal digital footprint by using different information and communication technology (ICT) solutions and services from public and private organizations. There are visions that personal digital footprints could be used to improve people’s health and wellbeing, especially in managing lifestyle-related diseases and their risks Studies have shown that there are several barriers that prevent individuals from collecting data, such as lack of time, difficulties in collecting data from multiple inputs, and understanding the format of the data collected [7]

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