Experiences of collecting and using the data
This section describes the main findings related to interviewees’ experiences of the data request process and using the data. In the following, the findings are grouped as follows: data request, form of data, and content of data.
Interviewees valued the background information to the pilot that was offered to them beforehand. The researchers developed a specific form for the data request process, making the process easier to manage for participants. However, some of the organizations from which data was requested had their own data request forms that interviewees needed to fill out, in addition to the pilot study’s own form, which caused extra work. Participants experienced that it was quite easy to send the data request, but most participants experienced some kind of challenge with the process later on.
Because organizations, especially in the health sector, had several registers, interviewees faced difficulties in finding the “right register” to direct the data request to. When they sent the data request, they did not get data from all registers at once. Interviewees had expected that the data would arrive considerably fast, but there was a quite a long delay in the provision of the data. The typical response time was approximately three months .
Not all organizations even reacted to the data requests, which was disappointing for the participants, because they would have expected at least a reply. In addition, the process did not always go as planned. One interviewee announced that a bank had tried to sell him the requested personal data. Several interviewees experienced that the data was not complete and that there was more information about them somewhere, but they were not given access to it. As one interviewee described her feelings:
Well, I feel that I didn’t get the information they have, I’m sure they didn’t give it all. (#3)
The way in which data requests are currently handled in most organizations was seen as old-fashioned by participants, and they considered that organizations “do not encourage” individuals to request and use their data.
Form of data
The data was often provided in written paper or PDF format, which was disappointing for many participants, as that hinders them from easily using the data for further analysis. A lot of time also had to be spent on checking all the information:
…many provided the data in PDF format. It causes extra work. At least if I had wanted to upload the data into a spreadsheet format in order to do something. (#3)
Participants also expected that if making data requests becomes more common, other people would also be disappointed:
It might be, similar to my experiences, that it would be a disappointment that it (the received data) is in such a format that you can’t utilize it. (#3)
Some organizations provided access to the data through a web interface, but the interviewees were not able to download the data for further use. They experienced that this data request process did not necessarily bring superior value compared to existing methods of providing access to use their own data, such as the current web services that organizations had (i.e. for members of retail membership programs).
Content of data
Mostly, the data received differed from what the respondents had expected. It was mostly registry information, which the participants did not find that interesting.
I only got information about some current and past contracts, terms of agreement documents, something like this. I didn’t get any real information. (#1)
From many places I only got register information, it was not anything valuable as such, which I would have wanted to know, which they surely have. (#3)
The participants also experienced that the data received from different organizations varied in quality:
Well, let’s say that the quality varies a lot. As a whole that does not give a very coherent image. (#2)
Interviewees’ positive experiences were mainly related to the information provided by healthcare providers. They considered it useful, because they expected to use it in the future by sharing it with their health-service providers. The content of the health reports was considered to be personal, interesting, complete, and even fun sometimes. As participants described their feelings:
In my opinion, the only useful information came from private healthcare organization (anonymized). I got all information on treatments and doctors’ medical reports. (#1)
All data I have from different health services is useful and I can put it forward to my next doctor. (#9)
Health information, I probably wasn’t even aware of what people have written about me, what doctors have written and nurses at the maternity clinic, it was fun. (#3)
Interviewees were surprised about the content, namely what information was provided to them, in how much detail, and how old some of the information that is stored can be. Interviewees stated that the experience was an eye-opener:
If you now think about it rationally, you understand that companies store that kind of information, but in a way, eyes were opened with regards to how much information is stored there about me. (#1)
Even though interviewees in this study were likely to be more familiar with personal data than individuals on average, because of their background in ICT or services research, they were surprised how much data was available in different databases. They also became more aware of the fact that personal data is valuable not only for themselves, but also for other actors, such as companies in the healthcare sector:
I think that everyone should be aware of the fact that your data is valuable. Information is cash nowadays. (#6)
Many respondents in interviews considered themselves to be early adopters of technology. Interviewees realized that health services based on personal data are still in the early phases of development. At present, participants had no high expectations concerning these services, but rather they thought that digital health-service development will be needed. Early adopters and groups such as Quantified-Selfers are genuinely interested in measuring themselves, and they are actually needed to increase general awareness of personal data, and health-related services based on personal data.
If nobody talks about these, if there isn’t a living example of a person who actually does this, then people won’t become aware of the possibilities in the same way. (#7)
It is not about that, that there would be a certain group of people who are willing to try all kinds of things, but instead, there should be enough good services that attract people. (#10)
Expectations for the future use of data
Interviewees were asked to describe their expectations for the future use of data (c.f. 15). These expectations are subjective interpretations by interviewees of how the digital footprint data that they collected could be used in future services.
Although the participants experienced that, in its current form and with its current content, the data was not that valuable as such, they described their expectations for future footprint data.
It just depends on what kinds of services innovative companies develop for these people. The data itself means nothing. But what will be developed based on that data. (#10)
all these kinds of data sources; we are not that good at observing our own behavior always, often decisions and things like that are made unconsciously and you are not always conscious of what you are doing or why and what the reasons are… (#2)
Based on our interviews, in the future, the use of personal data should empower individuals to understand their health better and to support and enable self-care. In this study, self-care relates to the ability to manage one’s own life, especially related to health and wellbeing [cf. 23]. Participants expected that if health data was available for services, it could provide a more holistic view of an individual’s own life through, for example, the analysis and visualization of personal data.
Yes, of course I monitor my sleep quite a lot. I’m more interested about the quality of sleep than how active I am. I would like to understand in a more detailed level why the amount of deep sleep has decreased and why I’m waking up or something like that. (#2)
Yes, it would reveal my own misunderstandings and illusions. It would probably give a more realistic view of my health status and would definitely be useful. (#9)
Interviewees emphasized that organizations could better utilize and refine data to develop future self-care services. For example, these services could provide support for lifestyle changes, enabling people to be more responsible for their own health and wellbeing. To develop self-care services, the following aspects of personal data were identified through our analysis: visualizing data, sharing data, and integrating data sources.
Participants expected that personal health data could be used for visualizing how everyday actions affect their own health and wellbeing, and how to avoid negative effects on their health:
I still emphasize the visual aspects, you would not have to read tons of pages, but you could understand at one glance. You could make a visualization of your different treatments and when you have been vaccinated, as an example. (#4)
Some of the interviewees would be willing to share their personal data, if this would enable the development of services of better quality for them. However, other interviewees had some severe worries about data sharing. Especially when it is a question of sensitive personal data, interviewees emphasized that they would share it only with organizations they could trust. Interviewees most trusted public actors, and especially healthcare organizations, with whom they were willing to share data. They also had positive attitudes toward sharing data for research purposes, which was quite understandable, as many of the participants were researchers.
Yes, I would be ready to share my data between health organizations, I don’t see any reason why my health information from a hospital district (anonymized) couldn’t be available in a private health care organization (anonymized). So, if I have to trust somebody, I think that those (health organizations) are the ones that I have to trust. (#12)
Well, if you think about it, that as a consequence of “my data approach” a person could then share his information for research purposes and get feedback, I think that is a clear advantage. (#1)
However, some interviewees were very skeptical about sharing their personal data with, for example, insurance companies and start-ups in foreign countries:
This kind of a typical example, which is probably against the law also, is one’s own genes and insurance companies, although I doubt that there’s anything I would worry about, but intuitively I wouldn’t make a linkage between this kind of information. (#2)
Or if we are talking about an insurance company, I’m not sure what I would like to share. If they raise prices based on if they see how healthily I’m eating or if it influences something. (#3)
But I’m not ready to publish my own health data on the internet, for instance, because I’m afraid of insurance companies. (#9)
Participants were worried about privacy risks related to data sharing and especially to cloud services. Some were even so worried that they would prefer local databases that are disconnected from the internet, to ensure data privacy.
Those who were willing to consider sharing data emphasized that control over their own data was crucial. Even though interviewees were mostly willing to share their data, possible benefits related to data sharing were difficult to see. It was important for the participants to be able to decide what kind of data they would share and with whom. For example, participants expected that they could share fitness data.
Integrating data sources
Integrated data sources played a significant role for interviewees. In addition, personal data integration requires sharing data with external actors. According to participants, integrating data from different sources automatically produces more reliable data, which, in turn, could provide better support for their health and wellbeing. Having their own data in one place could also increase the sense of control over their data:
It would be good to have a single platform for those (consumers), so you could have that (data) through the internet. You could go there for a couple of times at most and you would have the data by yourself or you have said who is allowed to use it. (#7)
Summary of the results
Participants’ experiences revealed that many of the organizations with which people interact in their everyday lives do not currently have systematic processes to provide data. On the other hand, the data that organizations are willing to share under the current legislation was not perceived to be very useful by the participants in this study, because the content was not found to be relevant enough and the data was not in a reusable form. The most interesting data was received from healthcare providers, but the participants could only take an overview of it. The participants expected that, in order for the data to be useful for them, it should be possible to integrate data from different sources, visualize it, and share it with reliable partners.