Camilla Lyckblad introduces us to her audio installation on medical records and record keeping. Read and listen…
During my doctoral work in the medical humanities, I often found myself working with transcripts and written materials that felt curiously flattened: rich encounters reduced to careful phrasing on a computer screen.
My research- Open Records, Hidden Thoughts -examines how clinicians in paediatric psychiatry document their work when medical records are made accessible to patients—and in this case, also their guardians—via online platforms. What was once a relatively closed document has become something more open, more present, something written with readers outside of the clinic in mind.
Scholars in medical humanities and science and technology studies (STS) have long shown that medical records are not neutral containers of information, but shaped by institutional demands, professional norms, and imagined readers (Mol 2002; Latour 1987). When records become directly accessible to patients, these dynamics do not disappear, rather they intensify (Blease et al. 2020; Bärkås 2024). In such contexts, the imagined reader becomes more concretely present, as clinicians orient their documentation toward anticipated readings, thereby shaping what is expressed, softened, or left unsaid.
In the interviews I conducted, clinicians described how producing medical records in this context changed how they write: they softened formulations, omitted uncertainties, and delayed documentation. Similar patterns have been observed in recent research on online medical record access for patients (Meier-Diedrich et al. 2024). What stood out, in listening to the clinicians during the interviews, was not only what they said, but how they said what they said—with hesitations, repetitions, and careful reformulations mid-sentence. Their speech carried traces of ongoing negotiation: between professional responsibility, patient care, and the awareness of being read. These were not simply clinicians as record-keepers, but clinicians as people: responding, adjusting, and working through uncertainty in real time.
Translating these voices into written excerpts, however, produced something else. The liveliness of speech—its rhythm, its uncertainty—became more stable, more coherent. In this process, something complex and difficult to name disappeared. The tension I began to notice in the material also began to shape my own practice. Just as clinical documentation can struggle to capture the complexity of a patient’s health and circumstances, academic writing can struggle to hold the voices and nuances of interview participants. Both involve necessary forms of reduction. Both risk smoothing over textures that are significant to the lived experiences of participants.
What if the quotes from my interviews could be encountered differently? Not as excerpts on a page, but as something closer to how they were originally spoken? Working with sound, and through artistic and physical form, I began to think about how some of that complexity might be restored. This became the starting point for The Living Document, an audio installation that explores what medical records, and research texts, cannot easily contain.
The installation stages the medical record as an object that speaks. In a darkened room, visitors encounter aged medical records placed on a round table, full of coffee stains and traces of use, with inky lettering on the front reading ‘Open record.’ When opened, the records play audio: voices drawn from my interviews, performed as closely as possible to the original speech. Hesitations, pauses, and repetitions, are retained. From within the record, a small red light begins to flicker as the sound emerges—part recording device, part pulse.
These old, physical documents, marked by use and by time, hold voices speaking about something new: a record no longer kept to itself. Those who are usually on the other side of the record, the clinicians writing it, now find themselves inside it. In this way, the document begins to shift—from something that records, to something that can almost answer back. In this way, the work attempts to remain closer to how the people I interviewed spoke, allowing other nuances to come forward. It was not the clear and authoritative voice often associated with medical documentation and the clinicians who produce it, but one that hesitates, adjusts, and responds in the moment.
By reintroducing voice, the installation foregrounds elements often edited out of written documentation: uncertainty, affect, and the relational work of clinical judgment. It also shifts the position of the clinician. Those who usually write the record now appear within it—no longer as authors in control of the narrative, but as voices shaped by the constraints they describe. Work in narrative medicine has emphasized the importance of attending to voice, listening, and the limits of clinical representation (Charon 2006). The Living Document extends this concern by asking what happens when voice is not only listened to, but materially embedded in the very object that typically excludes it.
The audio excerpts reveal how documentation, under conditions of openness, becomes a careful balancing act. Writing is no longer only about recording information, but about anticipating reactions, protecting relationships, and managing uncertainty. In written records, this work often appears as neutrality or omission. In speech, it becomes audible as effort.
The installation has been exhibited at the Document Academy in Philadelphia (2024), at Uppsala University Hospital during Märta Nasvell Day (2024), and at the conference Agency, Mental Health and Responsibility at Uppsala University (2025). Hearing the voices carried through these medical records, rather than reading them, seems to bring forward something of the human complexity that text can struggle to hold, hesitation, tone, and even moments of irony or sarcasm. Several visitors have described the experience as unexpectedly affecting—that hearing people instead of reading a text struck a different chord.
For me, the work offered a way to move beyond the limits of text, not by abandoning writing, but by placing it alongside other forms. It creates space for aspects of clinical work that are difficult to capture in writing alone, such as the hesitation, uncertainty, or careful softening that often precede what later appears in records as stable and coherent statements. In this sense, the installation also points to the value of creative and somewhat unconventional methods of research and engagement, not as decoration, but as ways of making different kinds of knowledge perceptible.
Below, the records are yours to open. The voices you will hear are reenactments of my interviews, spoken as closely as possible to how they were originally told. I hope you will hear them not only for what they say, but for how they say it.
Transcript:
Or actually, what happens, what happens both at the Pediatric Psychiatry unit and in adult psychiatry, is that if you have any kind of suspicion about something, you don’t write it down in the same way today as you used to. Instead, you write some kind of hint about it. Maybe you create a specific keyword called ‘early hypotheses’ which then isn’t reflected online. And if you suspect, for example, ADHD or autism, if you’re not sure that the parents themselves will think this is good, or the patient themselves will think this is good, then you don’t write it. I mean, you, you. Instead, you might bring it up again at the next meeting and then write it down. I think the transfer of information between healthcare staff has decreased because the records say less.
But then we have several patients where we sort of… “ATTENTION ATTENTION patient reads record.” Think carefully about how you phrase things.” And in some cases, it can be that the patient. But it’s one, a, young person I’m thinking of now. She reads her record right after the visits. The parents don’t do that. And they get slightly different impressions and perceptions. And that also affects us here and how we work. So it becomes sometimes like that… Because we’re not allowed to save information in any other way than through the record. And then it needs to be there a bit like a working document for us. At the same time, it should be for the patient’s… To benefit the patient to know what our planning is. And sometimes that clashes.
So if you have a more diffuse concern about a child’s well-being or about parenting ability, it might be that you don’t document it. When you don’t have factual evidence. Because it’s like, um… So when you have more of a feeling in the room that the child is not well cared for or that… How the emotional connection is between parents and child which is more… Subjects that are more difficult to describe, then it can be harder to write it in the medical record because you know that the parents will read it. Or that they have the opportunity to read it. And that makes you… Um… So that it… You avoid those descriptions.
[…] but the interesting thing is that what the patients who have contacted us about their records complain about is that there are mistakes like “I’m not the middle child, I’m the youngest” or it’s like “it says that I liked camping when I was little but you misunderstood that” and so on, and you understand that for the patients, this is relevant, or for me as a person, this could be relevant but it’s not relevant from a healthcare or assessment perspective, and it’s very clear, I would say, that these are the details people contact us about and want to change in the records and have opinions on, and that is another aspect of why you don’t need or should spend time writing stories about patients.
Mm… I worked in another location. A long time ago, um, had an older colleague who was soon to retire. He told me about an incident where there was a conflict in the family. The father, well, he set quite strict demands on the children. And the children had contact with pediatric psychiatric services. He, the father, demanded to read the child’s medical record. And then my medical colleague understood that it would become a problem for the children. Because it turned into a situation of coercion. So he wrote a parallel medical record that he handed over to the patient, the father of the patient then. It was a bit creative, one could say…
[…] I hadn’t prescribed anything, we had just talked about it, the patient and I. And then I had just written in the record that we discussed, um, antidepressants, and then… The… Um… The mother, she went ballistic! Um, she was so angry she called me 30 times on the phone and, and, asking how we could do this and wanted to delete it, didn’t want the child to come to the Pediatric Psychiatry unit anymore and there was a lot of that kind of stuff. So it feels pretty clear that this was a situation where the parent wasn’t well, which affected… Um… The patient’s chances… Then she, she had a birthday later on, so it resolved itself, now the parent can’t see the records anymore.
There is an awareness that we have always had with the medical records that parents, for example, can use it in custody conflicts and custody disputes. Suddenly, the child’s conversations with the psychologist end up in court. So we have had that dialogue with the parents for all these years even before it was reflected outwards. It’s easier now, but it has always been there, you know. We are aware to some extent to talk to the parents about “not using the medical records” for those purposes because it can hinder the child from speaking and getting care and help. Then there are parents who prioritize their own interests over their children’s, if you know what I mean… So… I think that awareness existed even before. And even among the children that the parents have the right to the medical records.
I always try to think that I have the patient on my shoulder [laughs]. Or the caregiver, that I have them standing behind me. So, how I write is like it should be, yes… so clear and so, like, really as little written as possible. Yet still, like, all the parts are included. But I always try to think that I have the patient on my shoulder who is sitting and watching and should be able to, should be able to read this. I should be able to stand by what I document. It’s like. Yes, it should reflect the patient’s, like, yes it’s, yes, the patient’s record. So I think that, that makes it better documentation many times.
About the author
Camilla Lyckblad is a doctoral student in the Graduate Program in Medical Humanities at Uppsala University, Sweden, affiliated with the Department of ALM and the Department of Women’s and Children’s Health. She can be found on LinkedIn here.
References
Bärkås, Annika. 2024. Patients’ Access to Their Mental Health Records : Understanding Policy, Access, and Patient Experiences. https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-522720.
Blease, Charlotte, John Torous, and Maria Hägglund. 2020. “Does Patient Access to Clinical Notes Change Documentation?” Frontiers in Public Health 8 (November): 577896. https://doi.org/10.3389/fpubh.2020.577896.
Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. Narrative Medicine: Honoring the Stories of Illness. Oxford University Press.
Latour, Bruno. 1987. Science in Action : How to Follow Scientists and Engineers through Society. Harvard University Press.
Meier-Diedrich, Eva, Camilla Lyckblad, Gail Davidge, et al. 2024. Impact of Patient Online Record Access on Documentation: A Scoping Review. https://doi.org/10.2196/preprints.64762.
Mol, Annemarie. 2002. The Body Multiple : Ontology in Medical Practice. Duke University Press.
