eHealth platforms as user–data communication: Examining patients’ struggles with digital health data

The primary question that accompanied the introduction of eHealth platforms is related to the very access to data. As stated above, actors involved in creating sundhed.dk generally agreed on the importance of providing access, but initial discussions focused on when patients should get access to their health data. In 2013, Danish citizens still only had access to their medical records with a two-week delay. In 2015, it was then decided that citizens should be granted immediate access to their data.

The debate about access led us to question the very concept of data: what are we talking about when we talk of digital health data? At first glance, sundhed.dk provides two types of data: laboratory results in the form of numbers and quantitative data, and medical notes in the form of keywords and short written sentences. When patients’ access to data was discussed academically, it was mostly in relation to the question of empowerment, focusing on how access to data supports citizens undergoing medical treatment. In the following, we will discuss the issue from a data perspective, asking which data empowers citizens. As a backdrop to this discussion, we will draw on literature on the topic of Quantified Self (QS) and the concept of data sense-making (Lupton, 2017).

The exponential growth in smartphones and the subsequent emergence of self-tracking applications, from counting steps to following sleep cycles, spawned a QS movement aimed at creating “self-knowledge through numbers” (QS, 2020). While new technological possibilities were initially celebrated and welcomed by a broad community interested in a healthy lifestyle, over time those practices have been criticised for morphing into forms of surveillance, routine behaviour, and performance of the self (Lupton, 2016; Williamson, 2015). De Moya and Pallud (2017) note three central issues that characterise QS data: 1) digital technology as a means to capture data; 2) cognitive aspects of working toward self-knowledge or self-reflection; and 3) related behavioural adjustments. Lupton (2018: 2) takes this conceptual approach a step further, writing that “digital monitoring practices tend to position the body as a data repository”. Tracking devices dissect the body into a series of numbers and measurements that call for new forms of interpretation and sense-making processes. However, QS data is not self-explanatory and self-knowledge does not arise by itself. Lupton (2018: 3) therefore proposes the concept of data sense-making to raise awareness of the “co-constitution of human and non-human sense-making”. Typically, sense-making processes are related to cognitive or behavioural processes, as described above; however, Lupton argues that the hybrid entanglement of humans with data must be emphasised.

While QS data is not Big Data in the traditional understanding of large datasets, users may experience it as “big” in the context of their own lives (Lupton, 2018), and it is hence subject to individual interpretation processes. In contrast to this subjective and interpretative view of data, Hartzband (2020: 15) claims that health data is factual and verifiable and that medical professionals “establish facts either by direct measurement or by the analysis of direct measurements” and that they “need to have facts that can be verified to establish the truth or credibility of the statement”.

Questions of data are strongly bound up with epistemological and ontological questions. Although health data provided on eHealth platforms follows medical standards and is not subject to personal collection processes as QS data is, it is still strongly bound to users’ interpretation processes. Digital health data has left doctors’ offices and entered private homes. Digital health data is accessible anytime, anywhere, and, in the light of these new practices and new contexts, it is important to understand digital health data as more than factual information provided by the medical field. It is data, as Lupton (2018: 2) puts it, that confronts users with “making sense of the information, deciding how valid or valuable it is” and calls users “to know their bodies better and more intensively, and to work to interpret these novel forms of information about themselves”. As an extension to these thoughts, we understand the digital health data provided on sundhed.dk as data that is inevitably bound to the patient's body, calling and confronting its owners to understand and know themselves.

Ever since information and communication technologies became an integral part of society, questions have arisen as to the extent to which digital technologies empower their users. While, in the beginning, access to information was viewed as being of unique and substantial value, critical studies raised awareness of the affordances of technological infrastructures. Krantzberg's (1986: 545) first law of technology proclaims that “technology is neither good nor bad; nor is it neutral”. By this, he means that the introduction of technology is always subject to greater consequences than the immediate, intended purpose of the device. While sundhed.dk was created with the ambitious purpose of patient empowerment and improved communication, the greater consequence is that it affects patients’ experiences in many different ways.

Digital media use has been studied extensively in this respect, especially with regard to sense-making processes and how habitual practices revolving around digital media inform individual life choices (Couldry, 2012; de Certeau, 1984). Digital media use from an everyday perspective is often understood as routinised and less reflexive; however, digital media studies have also emphasised that user agency should not be underestimated. While digital media use may appear as a seldom-questioned routine, several studies show that users are aware of their behaviour and often highly critical of digital platforms (Schwartz & Mahnke, 2020). Positioning the user in the context of everyday life is hence of special importance. Typically, digital media technologies are black-boxed to their users, and underlying values are therefore hard to grasp. As mentioned above, affordance is often used as a term to describe the entanglement of human use with technical structure. Dourish (2017) criticises the wide use of the term affordances and points to the fact that digital technologies are made by humans and that digital media platforms are material objects, albeit constantly evolving because of their human users.

Regardless of how the term affordances is used, it reminds us how important it is to acknowledge the user–data relationship. Even though critical studies emphasise the power aspects engrained in digital technology (Peacock, 2014), users are not without agency. With regard to digital health data, in particular, users are not passive consumers of data but must actively engage with and, as noted above, make sense of the data. eHealth platforms thus do not broadcast information like traditional media but are part of creating an active, personal relationship with the user. This emphasises the relational aspect that connects users to their health data. Checking one's health data is a highly personal endeavour that requires an active user. Digital health data is therefore not just about reading and understanding, but about building a user–data relationship in which eHealth platforms create the context for this relationship.

In the previous two sections, we shed light on questions related to digital health data and eHealth platforms as a context for user–data relationships. In the following, we elaborate on the concept of communication as the defining element of the user–data relationship. Traditionally, digital technologies are understood as mediators, for example, as mediators of the doctor–patient relationship. However, as we have argued, eHealth platforms do not simply mediate the experience but create a new kind of context for a new kind of relationship between patients and their health data. Following the considerations on human–machine communication (Guzman, 2018), we argue that this relationship is a communicative one.

Different post-phenomenological traditions have inquired into the issue of how humans relate to technology. One famous and often-used example is Ihde's (1990) distinctions of human–technology relationships. He describes situations whereby technology is not explicitly noted as an embodiment relationship and provides representations of reality while not being related to the actual experience as a hermeneutic relationship. What he calls the alterity relation refers to humans interacting with technology, and in his understanding that means background relations create the context of an experience.

Several writers have taken his thoughts further to look at technology as something active rather than a form of mediator. This does not mean that technology must be actively experienced (it can still be in the background), but that it is active such that it communicates with its users. Gunkel (2012) was one of the first to point to the fact that, because of their highly complex technological operating mode, computers are no longer instruments that must be animated but have turned into machines that call for an appropriate response from their users. These thoughts are in line with Lupton's (2017) ideas of data sense-making, stating that data calls for user responses.

In our research, we follow Lupton's (2017) and Gunkel's (2012) ideas of digital technology and, more specifically, data calling for user responses, and define this as a communicative practice. This means that communication is not just about transmitting information but refers to complex processes of negotiating meaning. Meaning is crucial, as it is the basis for patient engagement and of the desire for patients to be coresponsible. To summarise, the conceptual lens we propose in this article is to understand eHealth platforms and, more specifically, sundhed.dk as user–data communication. The relatedness of users to their data and the process of negotiating meaning as communicative practice are crucial elements. The perspective developed hence sheds light on the relational aspects and the entangled communicative processes that account for the complex process of patients responding to their data.

Sundhed.dk is used for various reasons and in different ways. All of our informants had used the platform for its medical encyclopaedia, and more than half had used the platform's catalogue of medical specialists and their personal list of prescriptions. These general functions are valued and known by most of the users we interviewed. When it comes to specific medical data concerning the individual's health and treatment process, however, the picture is somewhat ambiguous. Checking numerical values from laboratory tests, and written notes, evaluations, and hypotheses proposed by the doctors in the individual's personal health record, produces different responses and reflections. While the consequences of the numbers and statistics may be difficult to fully understand, the numbers are perceived as facts and as a system one can learn to master. Written evaluations and hypotheses may be written in a medical language that can be difficult to understand, but, unlike numerical measurements, the interpretative quality of the written word tends to produce insecurity and confusion.

Peter, a 26-year-old man with no medical conditions, used sundhed.dk for updates on his laboratory results when he was occasionally tested. He was generally content with the information provided on the platform, but he found some of the data confusing and the medical language difficult to understand. Although the platform creates more transparency, which he found reassuring, it could be difficult for him to assess whether the data presented painted a good or bad picture. While Peter struggled to understand his laboratory tests, Marianne learned to interpret the results of her blood tests in terms of good and bad. Marianne is 70 years old and has undergone a severe case of cancer, and she was clear from the start that she wanted to know the details of her treatment process. For her, access to the laboratory tests was pivotal in coping with the disease and giving her a sense of agency. The following excerpt from the interview illustrates the importance of being able to monitor the laboratory test results during the treatment process:

It's a bit like having… even though you don’t have any control over how a cancer develops, it's still about having a bit of control over “now, that is how it is”. […] I think right from the start, in a way, even though I was in shock, I somehow took the disease on. And, “we must do something about it – all the stuff I got injected into me”, and of course I also got curious about “what does it mean when one number is such and such”. […] I think it's valuable. It gives me peace of mind – or turmoil at times [laughs].

Peter and Marianne both appreciated having access to their data, and the two examples demonstrate how transparency potentially has a great impact on the patient's experience of involvement. Data from laboratory tests requires a level of medical literacy in order to feel in control. Unlike laboratory tests, however, reading doctors’ assessments, evaluations, and diagnostic hypotheses can be easier to understand to begin with but, later in the process, fosters new kinds of concerns. Anne, 50 years old, had never logged in to sundhed.dk and just used the public pages with general health information. During the interview, she signed in and started reading what appeared to be the doctor's description of one of her pregnancies and subsequent weight gain. As we discussed the different details of the text, Anne commented: “It says so in black-and-white, right? ‘Obesity without specification’. It's not nice, after all. But there it is”. At the time of her pregnancy, doctors had recommended she keep an eye on her weight, Anne recollected, but she didn’t realise they had perceived her weight as a particular problem. “It's a special type of information, isn’t it? …which you don’t necessarily want”, she continued.

Being able to access data on sundhed.dk offers the opportunity to see the health professionals’ assessments of you as a patient and “to look over their shoulder”, as an informant put it, for better or worse. Anne's health data tells a story of the past and a pregnancy she has come to terms with. But how is data interpreted when you are in the middle of a treatment process? And what if data involves vulnerable and highly personal information about you? Three of our informants had been through psychiatric treatment, and they all emphasised the difference between being described on the basis of somatic and psychiatric examinations. The language is different, for a start, but more existential elements are also at play when being assessed by a psychiatrist or a psychologist. Tina's case exemplifies some of the dilemmas and ambiguities that follow when you have access to the professionals’ evaluations of you. 27-year-old Tina went through psychiatric treatment. She rarely checked what she calls her somatic data, since she considered this kind of data as correct; however, the accuracy of the psychiatric data worried her at times. She sometimes felt that the professionals’ descriptions of her misrepresented her and her challenges, and, for that reason, she occasionally checked her health records. Tina explained:

I’m interested in knowing what they’ve written about me [laughs]. I’m very interested in the text being accurate, right? Because when it's not only somatic but they are also describing your mental state, it's important to agree with what it says, right? […] I get sad sometimes. When I think, “well, that's not me”. Or it creates some frustration. And then at other times, it's just fine, right? But there have been several times when I got upset because I couldn’t recognise myself in the text, you know?

After reading the note, Tina reached out to the health professional who wrote it, asking if the data she disagreed with could be deleted. The response was that it could not, but a supplementary note referencing Tina's comments could be added. “So that note follows you”, Tina said, “if someone bothers to read it, right?” Tina's reflections on the consequences of having access to data illustrate how patient–doctor relationships potentially change, as patients not only educate themselves to understand data but also challenge and oppose what is documented. The technical materiality of the platform alters boundaries between doctors’ and patients’ knowledge; new questions arise and new conversations are necessary, as patients’ interpretations of data becomes central to consultations. Digital health data, as Lupton (2017) reminds us, confronts users with information to make sense of, and patients are called to either take on the disease, as Marianne puts it, or evaluate themselves according to data on sundhed.dk, as Tina's case illustrates. Patients may struggle differently with qualitative and quantitative data (Nielsen & Grøn, 2013), and data may be subject to different kinds of interpretations and negotiations, but immediate access to health data undoubtedly fosters both new opportunities for self-reflection as well as patient empowerment and new concerns and struggles.

Data on sundhed.dk is easily accessed from home – either on a computer or smartphone – and the immediate access to data enables users to read and interpret the medical data without guidance from a health professional. This may produce insecurity and concerns on the patient's side, along with a set of unanswered questions, but it may also give a sense of control, as Marianne commented. George, a 74-year-old man who had just been through an angioplasty,

A procedure to restore blood flow through the artery.

According to Susan, her prior experience of treatment, reading about her condition elsewhere, and surviving cancer all enhances her faith in surviving a second time as well. Her experience emboldens her, so to speak, and only in that particular situation is she determined to check her data: Susan:

 So, when would I want to know? I obviously wanted to. I wanted to make sure I didn’t miss anything. But that's a risk. I’m absolutely aware of that. What if I got a test for bowel cancer or some other kind of cancer? Would I be just as bold? I’m not sure because I wouldn’t know about that cancer. I think it's about how confident I feel in what I’m facing. So that's why I think it must come down to something concrete, you know, in the specific case: would I dare?

Susan and George were both well aware of the risk they took when they accessed data from home. This new medical-domestic space, in which the patient is accessing highly specialised medical data at home, potentially gives insight into a professional domain of notes for documentation, evaluation, and assumptions about diagnoses. The platform produces a new borderland of healthcare at home (Mattingly et al., 2011) that generates new reflections and considerations. Marianne remembered the first time she signed in to sundhed.dk. It was Christmas morning, “to add to the drama”, as she put it. This first visit was one that created more turmoil than peace of mind, Marianne recalled, as her medical record indicated that the doctors suspected her condition to be a particularly aggressive form of cancer and, in that case, the prognosis was bad. Marianne was shocked but had to wait until she could talk to her doctor to ask about the hypothetical diagnosis. The ambiguous answer she received from the doctor neither comforted her nor clarified the matter further, but the example demonstrates the dilemma of either accessing data at home – enabling you to prepare for and ask qualified questions at the next consultation but leaving you without immediate professional guidance – or waiting for the health professional's presentation and interpretation of data. Asked whether or not they preferred the current option, all our informants agreed that immediate access was a privilege as well as a prerequisite for qualifying the conversation between patient and health professional. Literature on eHealth technologies traditionally describes access to digital health records as part of medicine 1.0, referencing web 1.0, whereas medicine 2.0 refers to web 2.0 and patients’ sharing of data online (Petersson, 2019). However, as our analysis demonstrates, sundhed.dk is far from being solely a mediator between doctors and patients or an external memory system (Själö, 2005), as the platform creates a space for a new relationship between the medical institution and the home as well as a new relationship between data and patients. From that perspective, “‘empowerment’ becomes a set of obligations” (Lupton, 2013: 261) that prompts the patient to reflect upon their health status, whether or not they feel qualified.

As all Danes have access to their health data on sundhed.dk, people have certain expectations of the platform – some are met, others not. Our informants generally expected data on the platform to offer new insights into knowledge previously reserved for health professionals. What this knowledge entails, however, is rather uncertain. Half of the people we interviewed were satisfied with the platform's data and had educated themselves to understand that data; the other half questioned what value the data contributed. Susan, who survived cancer twice – first as a patient with no access to her data and the second time with immediate access to data – emphasised the significance of being involved in the treatment process through such access. She recollected the experience of not being perceived as an equal partner during her first cancer treatment. She elaborated:

I actually wish I had access to my own data earlier. Because I simply felt that I was one step behind all the time. […] I felt talked down to and that they talked over my head sometimes, right? It was as if I was a standard patient. But I thought I was no standard patient, I wanted to know everything, right? But I just wasn’t told. I felt like they wouldn’t want to scare me.

Susan wanted to be prepared for her consultations, involved in considerations and decisions about her treatment, and taken seriously as an equal partner – and having access to data is a crucial element in this. As an example, Susan mentioned that access to her own data enabled her to remind doctors of examinations in other medical units, which, in her experience, was sometimes necessary. The element of control and shared responsibility was also noted by Peter as a central part of such immediate access to data. Even though Peter had never been treated for any medical conditions, he imagined that access to data increases patient involvement: Peter:

 It's a receipt, right? And maybe some kind of control. There hasn’t been anything to note specifically. But it's nice to know that if anything happens, I can go check and see what has been written about me. That's a level of control that I as a patient value a lot.

While access to data is perceived as the prerequisite for being involved as a patient and as a kind of control mechanism for some of our informants, others question what kind of knowledge is gained from such data. A 34-year-old woman, Louise, logged in to sundhed.dk after the birth of her first child, encouraged by her midwife. She remembered the disappointment she felt when reading the data: “It's not that you get an assessment, it's just facts. There are no conclusions like ‘this was a very complicated birth’, or ‘normal birth’ or something, right? […] All you get is a process description”. Louise expected to find evaluations or conclusions in the data but only found descriptive notes of the birth. In a similar vein, one of our informants, John, a 64-year-old man, expressed his disappointment with the data. John had been through several medical examinations within the previous couple of years, and been referred back and forth between units. He found the data on the platform “banal” and lacking information about the doctors’ reasons behind, for example, referring him to a certain specialist. He also wanted the doctors to “write down some general reflections, other than, everything is fine, right? I mean, they could at least comment on the red numbers [numbers outside of the normal scale], right?” These statements raise questions about how patients are expected to engage with data and how patient involvement is ensured. Moreover, they shed light on the complex quality of interpretation. A lack of doctors’ reflections and conclusions may disappoint patients, whereas insight into doctors’ notes and considerations paradoxically possibly creates insecurity and frustrations. The importance not only of granting patients access to data, but also of prioritising resources for explanations and shared interpretation becomes obvious if misinterpretations and uncertainty are to be limited.