[…] Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice, 2025, Jayadeva & Lupton

[SNT Gatchaman]

‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice
Sazana Jayadeva; Deborah Lupton

This article focuses on the struggles of people with Long COVID to obtain diagnoses and treatment in the face of medical dismissal and ignorance.

Drawing on interviews with people with Long COVID who have engaged in self-tracking activities, it illustrates how these practices proved a valuable, if not completely successful, way to challenge medical dominance and epistemic privilege in relation to this contested illness. Furthermore, study findings demonstrate the important yet understudied role of online Long COVID patient communities in supporting self-tracking. The capacity for sharing patient-generated information through these communities offers a way for collective knowledge and interpretive resources to be amassed that can support communities of practice and mitigate hermeneutical injustice.

The article contributes to scholarship on the role of digital apps, devices and communities in the generation and distribution of lay knowledge relating to Long COVID, as well as to the sociology of diagnosis and contested illnesses.

Web | PDF | Sociology | Open Access

 

[Utsikt]

I’ve extracted the quotes and some of the associated text.

Spoiler: Quotes and text

For example, when Sonja initially approached her doctor about her recurring low-grade fevers (one of her more debilitating Long COVID symptoms), the doctor had suggested that they were a psychological manifestation of her fear of work:

So the Long COVID doctor I saw, he knows some things and also he calls himself a specialist. But, on the other hand, he applies gaslighting and uses some weird explanations for some things. With the recurring fevers, he was just like, ‘uh, you are afraid to go back to work’. And I was like, ‘no, [. . .] I really want to go back to work!’

It was only after Sonja presented the doctor with a few months of data from her digital thermometer, showing the proportion of days on which she had developed a fever, that he was willing to investigate further and prescribe treatment.

——

When Callum had approached his doctor after developing debilitating symptoms following an acute COVID infection, he had received a diagnosis of Long COVID but little by way of treatment or support:

[The doctor] basically said, ‘You need to take some Vitamin D, come back to me in Eight weeks.’ And I was just like, ‘Oh, I can’t do anything. My entire life is like – I literally, I don’t have my life anymore. You want me to sit around and wait for eight weeks?!’

——

Becoming aware of many others with similar symptoms helped participants see their illness as legitimate. During her interview, Olivia paused for a moment before beginning to discuss her experience of joining an online patient group:

I’ll probably start crying because it’s still quite emotional for me. [Patient Group] was the only place [where] people were [. . .] experiencing the same ridiculous symptoms like I get. [. . .] I was like, ‘there’s something desperately wrong here that nobody knows about except for us’. Well, [Patient Group] basically is the thing that saved me emotionally, physically, medically, everything.

——

They had begun self-tracking for the first time in an often-desperate effort to make sense of and find ways to cope with their Long COVID symptoms. Several participants attributed their decision to begin self-tracking entirely to suggestions by other members of their patient group/s. For example, Hannah observed:

I was kind of reading about this idea [of self-tracking] on that Facebook group. I started seeing people say that they were using apps or that they were using smartwatches. And this GP [a member of the group] had had this idea about keeping your heart rate low. [. . .] I thought this idea of tracking and trying to manage my symptoms by keeping my heart rate low was a really attractive idea. So I read people’s posts for a few weeks and then bought this [smart]watch around six weeks ago.

——

Furthermore, a number of participants discussed how they had chosen the wearable or tracking app they were using based on information they had acquired in patient groups. For example, Phoebe recounted:

And then last fall, I got this, the Garmin [wearable device], because everybody [in Patient Group] had been talking about [Garmin’s] ‘Body Battery’ [feature]. [. . .] I have followed a lot of conversations that I’ve learned from, where other people are discussing [self-tracking]. And, you know, it’s because of those conversations that I bought the Garmin.

——

Hannah highlighted the potential of patient groups and self-tracking technologies to reduce diagnostic delays in conditions like POTS:

I was reading some information about POTS, it was like, oh people experience a diagnostic delay of like an average of four or five years. And so that’s one huge benefit of both the watch and the [patient] groups. It’s like that significantly reduces that diagnostic delay because you’re like, ‘ok, everyone in this group seems to have POTS or like some sort of dysautonomia’. So you zero in on that and then you can use the technology to check whether that’s kind of reflecting your own experience.

——

Moreover, in a context where many participants had been urged by medical practitioners to exercise and increase activity, the importance of rest and pacing was something that participants discussed having learned primarily through patient groups. Roslyn recounted:

I think even before I had a device to self-track, I had been following the advice from folks from [Patient Group] that, like, you just don’t ever want to push it with Long COVID, because when you push it, you get worse. Just rest [. . .] track your heart rate. Once you can control that, you can start expanding your baseline a little bit. So, I think it completely shaped my plan for how to try and take care of myself. Because obviously, like, my doctor wasn’t taking care of me, you know?

——

Participants discussed how their self-tracking data, and the insights they had derived from it, enabled them to provide doctors with a concrete account of their illness, and equipped and emboldened them to advocate for the types of tests and treatments that they believed would be helpful, and to refuse treatments and interventions that they felt would not benefit them or could harm them (e.g. exercise therapies). As Anna observed:

It’s really empowered me to direct my treatment a lot better because I just have so much evidence and information of what’s impacting me [. . .] Like I do not think I would have had the treatment I have had, if I didn’t have the data that I have from my tracking.

——

Indeed, some noted that it was because of their self-tracking data that they had been able to get referrals to tests or specialists, and subsequently obtain formal diagnoses and access treatment. For example, Chloe explained:

I really had to be like, ‘No, look! Look at what [my heart rate’s] doing, you know, not just when I’m in the doctor’s office’, and convince [my physician] to send in the referral for both a cardiologist and for [the POTS diagnostic test]. Because she wasn’t going to do anything. [. . .] I think having that [data] definitely gave me more like, say, as a patient. Because they can’t deny that. When you show them these charts from Scanwatch, it’s like, no, I didn’t make that up, I’m not exaggerating, it’s not just anxiety.

——

However, not all participants felt their doctors would be interested or willing to hear about or look at their self-tracking data. Callum recounted his experience of trying to discuss his heart rate data with his doctors:

I have sometimes explained to them that I do this [self-tracking using a smartwatch], but their eyes glaze over. They’re not really interested in my experience. So I just don’t go into that. [. . .] I think they think, ‘Oh, well, it’s not actually a medical grade device.’

——

Some participants also worried that sharing self-tracking data with a doctor might inadvertently lead to the doctor feeling as if their expertise was being challenged. Vanessa, for instance, highlighted how she had to be cautious in how she approached discussing self-tracking data with doctors in the same way that people needed to be cautious in trying to bring relevant research papers to the attention of their doctors:

So I’ve brought up some studies a couple of times and I have kind of felt the tension around that. [. . .] I feel like it’s been similar to that. It’s best to say [. . .] ‘Hey, I’m having this experience’ without maybe bringing up the watch.

——

Nevertheless, even in cases where they had not shared their self-tracking data or had their self-tracking data taken seriously by a doctor, participants believed that as a result of paying close attention to their bodies and documenting their symptoms and key metrics over time, they had become confident in their knowledge of what they were experiencing, which made them more likely to stand up for themselves in medical contexts and less susceptible to medical gaslighting. Vanessa reflected:

I know that I have been consistently feeling X symptom because I have reported it [on the tracking app] that many times. I think that’s given me a lot more confidence when I’ve gone to doctors’ appointments [. . .] Like, if they have been dismissive of some of my symptoms, I’ve known, ‘hey, maybe this isn’t the doctor for me’. Instead of taking that in and being like, ‘oh, maybe I’m not really having this symptom’ or doubting myself.

A couple of bits from the discussion:

Notably, while in existing scholarship self-tracking has been framed as encouraging patients to develop a more biomedical concept of their illness (Ancker et al., 2015) as part of dominant ideas about patient empowerment, our participants described such data as bearing the potential to help their clinicians accept a more biomedical framing of their condition

Nevertheless, our participants still faced major barriers to legitimacy in the face of the epistemic authority and gatekeeping exercised by the medical practitioners from whom they had sought help. They had the challenging task of negotiating the fine line between both developing their own epistemic authority and attempting to contribute to their doctors’ knowledge base without unduly provoking resistance on the clinicians’ part.

I think it’s interesting that the patients are often criticised for making unfounded claims of causality and pathophysiology, but the reason that they are in a position where they have to try to make sense of things on their own is that the medical practitioners themselves are making unfounded claims of causality and pathophysiology.

The problem wouldn’t exist to the extent that it does today if medicine were doing their jobs.

 

[rvallee]

The only reliable expertise to be found is still limited to patient communities. Not all communities are good at it, in fact many are awful, but the only sources of reliable information with expert-level knowledge are in patient communities. There is not a single health care professional out there who knows more than what an average well-informed patient knows, and there are easily hundreds of thousands of us.

What's more, none of those experts have added anything from their profession. Not knowledge, not resources, not insights, not solutions or anything like that. All the useful knowledge has come from patients. Literally 100%. This is a completely unique situation.

And it's interesting to consider the general fiction of how illnesses are diagnosed, that it's not just an issue of ordering the right tests, how the patient experience is taken into account. This is pure fiction. As almost every patient with a chronic illness can report, physicians literally don't know what to do with this information, it's only ever used to help narrow down differential diagnosis. They don't listen, they interpret, filter and work through a process of elimination. But they have no ability to learn from that experience.

And although it's commonly excused with the fact that most clinicians are not scientists, the scientists working on this are doing no better at it. They can hear the words, but the words mean nothing to them. They may as well be in a foreign language they can't translate.

But there is no way to make this a problem, to embarrass anyone with how broken things are, physicians can't even understand that they are failing, because they have no idea what achieving something here even looks like. They hear this information from patients, none of which is consistent with that they are trained to think about, and the only way they can interpret this is by discarding the patient experience, since it does not fit with what they are told it's like.

And it doesn't matter that every single physician who became ill with ME/CFS is shocked that it's nothing like they were taught, they can't process that either. Even Garner, and others I have noticed, thought the same, when he was ill, while he was ill, but because they are so poorly trained in scientific reasoning, many of them actually convinced themselves that their experience of the illness was false all along, and that their recovery was their own doing all along.