Photodiagnosis of genital herpes and warts: a sociomaterial perspective on users’ experiences of online sexual health care

Abstract

Online sexual health services potentially transform modes of engagement with service users. We report findings from an in-depth interview study with users of a photo-diagnosis service offered by an established UK-based online sexual health service (SH:24). Adopting a sociomaterial theoretical perspective, we analyse the interviews for descriptions of health care with and through the affordances offered by SH:24. We focus on how the interactions of service users and clinicians with nonhuman agents opened or closed off capacities for better health and wellbeing. Our findings explore navigating online and in-person service options; digitising bodies; temporal affordances; the tension between anonymous and personalised care; configuring digital privacy; and when automated care is not enough. We conclude that emerging practices of care within digital health services delivered by more-than-human collaborations reconfigure experiences of diagnosis and treatment and require detailed attention to understand how they create and close down opportunities to improve or maintain health.

Keywords:

• Digital health
• sociomaterial perspective
• sexual health

Introduction

Digital technologies have become increasingly important for health service delivery, including sexual health care, testing and treatment. Such technologies can expand access to services (Wilson et al. 2017) and to peer support and information (Courtenay and Baraitser 2021), including for vulnerable or hard-to-reach populations and social groups (Nanda and Tandon 2019). The COVID-19 pandemic has limited in-person sexual health care and accelerated development of online services (Church, Gassner, and Elliott 2020). However, online health care has also generated new concerns about inequalities in digital access, maintaining the privacy of sensitive information that is uploaded and stored as part of service use, and the erosion of care within therapeutic relationships (Mol 2008; Ippoliti and L’Engle 2017; Newman et al. 2020). It remains unclear to what extent digital services could or should seek to re-create familiar ways of therapeutic caring.

As part of a process of re-thinking the value of different media for health service delivery, we report findings from an in-depth interview study with users of the photo-diagnosis process offered by SH:24, an online sexual health service ("SH:24" 2021). Established in 2014, SH:24 is a not-for-profit organisation commissioned by the public sector in the UK. The service provides 24/7 free and confidential diagnosis and management of sexually transmitted infections (STIs) and online contraceptive services with support from specialist sexual health clinicians. SH:24 was co-designed with healthcare consumers and providers through an iterative process using a model developed by the UK Design Council (The Design Council 2015; Trimble 2016). The service has received awards for design and user experience¹. It is designed to be attractive and simple to navigate, and to communicate both accessibility and anonymity.

SH:24 service users provide personal information via an online form, with test kits for self-collection of blood or urine sent by post in discreet packaging and returned to the service for analysis. People with symptoms of genital herpes and genital warts can access the photo-diagnosis service, where they upload self-taken photographs of their lesions to be assessed by specialist clinicians. Where required, treatment is prescribed and posted to users through a UK-based registered pharmacy with remote specialist clinical support provided through text/phone. If a diagnosis cannot be made, or if clinically indicated, users are referred to in-person clinical care.

The interviews reported on here were conducted by SH:24 as part of an evaluation of user experience. For the purposes of this paper, we have re-analysed the interview transcripts from a sociomaterial perspective, with attention to surfacing the details of how users came together with clinicians, the affordances of the platform, and other material dimensions when seeking diagnosis and treatment. We focused on a particularly sensitive area of health care: namely, the digitised diagnosis and management of genital herpes and genital warts. Both infections mainly cause mild disease yet are experienced as highly stigmatising (BASHH. 2014) and cause significant short- and long-term emotional and psychosocial consequences, including anxiety about telling current and future sexual partners (Mortensen and Larsen 2010; BASHH. 2014). Both infections are common, with 5% of the world’s population experiencing genital ulcers from herpes infections each year (Looker et al. 2020) and 4% of the UK population reporting a previous diagnosis of genital warts (Sonnenberg et al. 2019). The mainstay of diagnosis for herpes and warts is a visual assessment of the genital lesions (although tests are also important in the diagnosis of herpes) with self-managed treatment options available making diagnosis and treatment possible within a digital health service. Genital herpes and warts account together for 18% if all new diagnoses of STIs in England (Public Health England 2020) and moving management of these conditions online could potentially improve access as well as reduce health care costs.

The shift online in healthcare has been typically framed in terms of efficiency and convenience but much less in terms of care. Yet caring is a fundamental element of health services. For example, the UK regulator responsible for monitoring, assessing and rating health services, the Care Quality Commission, includes caring (treatment with compassion, kindness, dignity and respect) as one of five key areas of health service assessment (CQC (Care Quality Commission) 2021). A lack of attention to care within digitised health services is an omission with implications for both clinical safety and service user experience which we hope to address in our study.

Background

Our approach to understanding service users’ experiences with SH:24 adopts a sociomaterial perspective which recognises that people’s encounters with digital platforms are dynamic assemblages of humans and nonhumans. In our work, we draw on foundational scholarship in more-than-human theory offered by Indigenous and other non-western philosophy (Gibson 2019; Hernández et al. 2020) and feminist new materialism (Bennett 2010; Puig de la Bellacasa 2017). Adopting this approach, states of health and ill-health are understood as continually configured and reconfigured as humans come together and come apart with other people, other living things and with non-living things, place and space. Health states are positioned as always lively and relational, generated with and through people’s interactions with other agents, including other people but also nonhuman agents. From this perspective, the task of social analysis is to untangle complex assemblages and understand how diverse agents and relational connections influence states of good health and wellbeing (Andrews and Duff 2019; Crath, Gaubinger, and Rangel 2019; Lupton 2019).

This theoretical approach and research focus includes addressing how humans and nonhumans come together in matters of care (Lupton and Maslen 2017; Puig de la Bellacasa 2017). Understanding everyday practices of care in health settings is important to ensure that these practices are attended to and not eroded (Mol 2008). When health care is offered ‘at a distance’ (Pols 2012) via digital platforms, devices and apps, a more-than-human perspective directs attention to the ways these technologies and other objects entangle with human bodies in generating affective forces and relational connections that can work to open or close off agencies to achieve wellbeing and good health (Lupton 2019).

Previous research adopting a sociomaterial perspective has shown that care within digital health services makes some familiar strategies more difficult, as the multi-sensory elements of in-person diagnosis and treatment are limited (Lupton and Maslen 2017). The reduction of health care to visual and often text-based communication, and particularly the loss of haptic and contextual elements of care, may generate a sense of ‘disengaged distances’ (Puig de la Bellacasa 2017) that might not support therapeutic relationships. However, the affordances of digital services, or the features they are designed to offer users (Davis and Chouinard 2016), also make new types of diagnosis, treatment and caring relations possible. Digital health services can transform the modes, time and space of interactions (Nicolini 2011). Communication often changes from synchronous to asynchronous, from face-to-face to digital and from voice-based to text-based. These shifts in the delivery of healthcare bring new options for caring, such as more regular ‘checking from a distance’ (Pols 2012) where providing permission to communicate regularly and a way of doing this that is less intrusive can generate a feeling of being protected and reassured (Piras and Miele 2019).

Done well, care at a distance can feel ‘warm’, friendly and supportive – helping people feel that someone is checking on them and is concerned for their wellbeing, even when there is no direct human contact involved (Pols 2012). For example, a study of automated text messages for people who are trying to give up smoking found that the messages were experienced as a ‘friend batting in your corner’ (Douglas and Free 2013). In this example, the interface ensured that messages were delivered regularly, reliably and responsively at the times and in the manner chosen by the recipient. Similarly, ‘digital intimacy’ can be achieved where digital technologies provide a great quantity of regular clinical measurements more frequently between providers and service users (Piras and Miele 2019). In this context, remote digitised care can offer closer monitoring of complex health conditions, bringing possibilities of both enhanced health care and enhanced surveillance.

Most qualitative studies related people’s use of digitised sexual and reproductive health services have focused on digital devices designed for monitoring aspects of sexual activity, pregnancy, menstruation and fertility (for example, Lupton 2015; Wilkinson, Roberts, and Mort 2015; Karlsson 2019; Grenfell et al. 2021). This research shows that users appreciate such benefits as feeling in better control of their bodies, being able to predict fertility cycles and prevent or achieve pregnancy. However, these technologies often overly focus on individual responsibility for good health, adopt a highly normative gendered approach and marginalise or ignore users who do not identify as cis-gendered or heterosexual or who are living with disabilities or on a low income. The use of these devices and apps can also require invisible labour that can become overwhelming to users. Women are particularly expected to conform to expectations to be responsible digitised reproductive citizens, carefully managing their bodies in terms of sexual and reproductive health and functioning.

Less social research has been conducted on topics such as the affective and relational elements of digitised services for sexually transmissible infections. One exception is a project involving a more-than-human analysis of the use of an HIV self-testing app (Janssen et al. 2021) which documents the affective elements of testing as mediated by this technology.

Our study builds on this work by focusing on a photo-diagnosis service and surfacing the relational connections and affective forces that together opened or closed agential capacities for service users. In the case of SH:24, people are engaging with other people via the affordances of the platform, which itself was designed by people with the needs of both clinicians and users in mind. The service users’ bodies are digitised in various ways, including through the digital images they take using their smartphones and send to the service providers for examination and through text messages exchanged with the providers. Humans come together with technologies at each stage of the process to configure capacities, including the provision (or non-provision) of a diagnosis. These capacities are structured and delimited with and through the design of the platform: beginning with how users first engage with SH:24 clinicians by making initial contact and seeking help or advice for their health problem.

Materials and methods

We re-analysed qualitative data from ten semi-structured interviews conducted by two different researchers, Jessica Engen and Alan Black, as part of an evaluation of the acceptability of the online photo-diagnosis service. Ethical approval for the study was provided by London Fulham NHS Research Ethics Committee (Reference 18/LO/2007). Users of SH:24’s photo-diagnosis service during the study period were invited to take part via an SMS sent by the researchers and purposive sampling was used to ensure variability in terms of participants concerns (warts or herpes) and clinical outcomes (treated, referred or reassured).

There were 268 eligible users during the study period, of which 139 were invited to interview, and 27 agreed to be interviewed. Of the ten people who completed an interview, seven were conducted in person and nine identified as female. A maximum of two follow-up texts were sent to non-responders. Informed consent was obtained prior to the interview. Face-to-face interviews took place in a private room at a university.

Prior to commencing the telephone interviews, the interviewer confirmed that participants were in a suitable location where they felt comfortable. All participants were offered a £30 gift voucher for a face-to-face interview (to allow for travel time and costs) and £20 for a telephone interview. Interviews were audio recorded and transcribed verbatim and all participants were given an identifying number to maintain their anonymity. Of the ten participants, all described their gender as female, six were aged 20–29, three were aged 30–39 and one 40–49 years. Three described themselves as White British, one as Black Caribbean, one as Black African, one as Black Other and one as mixed White and Asian. Four were concerned about genital warts and six about herpes.

Our theory-driven approach to analysis focused on the issues generated from our reading of the literature on health care in digital settings reviewed above: specifically, more-than-human assemblages of care and their influence on affective and relational dimensions of service user experience. Following the analytical method outlined in previous analyses of digital health use adopting this approach (see, for example, Lupton 2019; Janssen et al. 2021), we read through the transcripts looking for ways in which the participants described their experiences of the photo-diagnosis service in terms that referred to affective states and relational connections made between the humans and nonhuman agents involved (both digital and non-digital, and including place and space), and the ways in which interactions in these assemblages opened or closed agential capacities. Our findings are grouped under the following main themes: navigating online and in-person service options; digitising bodies; temporal affordances; the tension between anonymous and personalised care; configuring digital privacy; and when automated care is not enough.

Findings²

Navigating online and in-person service options

The accounts of service use showed that most participants used multiple services and platforms, both in-person and online, within a single episode of care with many frustrations and dead ends. A typical journey of service use started with a concern about a symptom that triggered an online search and a subsequent attempt to book an appointment at a family doctor or specialist health service. Those people who visited family doctors were referred to specialist health services and members of this group, as well as those who went directly to sexual health services, struggled to obtain access to specialist clinics because of long waiting times or limited availability of appointments and tried the digital service instead. They sought many different outcomes including, a diagnosis, treatment, reassurance or information. These accounts suggested that interviewees at first had wanted face-to-face care and that seeking care from SH:24 was the endpoint rather than a starting point. As participant 5 described it:

There was lots of Googling and trying to work out what [the condition] was. Then I actually had my smear test coming up so I thought I could get that checked at the same time, but I was told that I had to go to, like, a specialist sexual health clinic or person. So, then I started researching how to do that and I had used SH:24 before so I thought maybe there would be a service and there was … I would have liked to have gone to a clinic, but it just didn’t fit in with my schedule and I was trying to also call various clinics and I couldn’t get through as well.

Previous experiences with face-to-face services were often reference points for descriptions of online care. People compared the two, noting the differences and pros and cons of each, including the feelings and relational connections that are generated as they encounter humans (often health care professionals) and nonhumans (appointment booking systems, online information systems) when seeking a diagnosis. For participant 1, the clinic was ‘more intimate’ and the online service provided ‘a quick fix’.

Finally went to clinic and got treatment – I felt a bit better, but I think maybe because they took up the time, I spoke about the situation, I think I was there for best part of an hour actually, talking about different symptoms and everything like that. I think he was like a specialist. And I felt listened to and then obviously I had the whole sexual health screening as well at that moment for that time as well. And everything else was alright. So by the time I left there, I actually felt pretty better, like liberated, like, ‘Okay, I’ve got this under control now’. ……… The strength of the online, I saw it as kind of like a quick-fix, take the pictures, upload, you kind of forget the medication, the medication is sent to you. Whereas I find that, with the face-to-face service, it’s more intimate.

Digitising bodies

Interactions with nonhumans were present in users’ accounts of their experiences of taking photographs of their genitals and sending them to the SH:24 platform. The quality of images facilitates the diagnosis process, which was conducted by the SH:24 medical staff who examined the photographs rather than conducting a clinical examination in person.

The platform provides instructions on the images required and how to take them, including positioning a penny coin near lesions to provide scale. In the interviews, agents such as text messages, smartphone cameras and flash capabilities, the space and place in which the images were taken, phones, the coin, the information provided on how to take the photograph and the interface for uploading images were mentioned as contributing to the interactions involved in configuring a diagnosis. The need to take and review the photographs required people to interact closely with their own bodies. This a different situation compared with a clinical setting, where once a user has identified a lesion of concern there is the option to delegate close examination to the clinician.

All these elements generated strong affective forces and relational connections as users negotiated the quality of the camera on their phone, their ability to use it effectively, the space and place in which they were taking the photograph, the need to place the coin correctly and the position of the lesions. As participant 5 put it:

SH:24 is the one that asked for a coin, is it? I found like that was, that’s kind of like an impossible step. I think I actually gave up on that in the end … I don’t know how to take a better picture, really, because even for my own records, to be honest, just check what was happening … Well, you’ve got to hold a phone, potentially a light source. And a coin that’s kind of, and at an angle. So, yes, I just don’t think I had enough hands for it … And I guess also when, on my phone anyway, when you get too close it won’t focus. So, that’s why it was getting blurry.

Humans working together with the affordances of nonhuman agents in generating images resulted in both opening capacities for diagnosis but also closing them. Depending on the smartphone, lighting and the skills of the person taking the images, as well as their ability to manipulate their body to obtain a clear sight of their genitals, image quality was variable. The photographs taken sometimes offered a different view of the lesions from that offered by direct visual inspection: for example, if the image was very magnified. They also sometimes changed the colour and definition of lesions. These visual dimensions sometimes facilitated diagnosis but at other times did not. As participant 5 commented, the SH:24 clinician responded that they could not make a diagnosis from the photograph uploaded: ‘Well, it was kind of, we can’t diagnose it … they also thought that it looked really red, which I think was actually my photo and not what real life’.

Temporal affordances

Compared to in-person health care encounters, once an interaction is initiated by a service user (by accessing the platform and completing the online form), SH:24 spreads the timing of care over a longer period of time. For example, once a photograph has been successfully uploaded, the user is immediately reassured that it has been received, even if it is late in the evening. This affordance relies on messages written by humans at the time of service development and delivered by the system when the image is uploaded. This shows care, in understanding and pre-empting possible concerns about the safe receipt of their photographs. Further communication may be spread over time as users and clinicians ask and answer questions by text message, so interactions are not confined to the time frame of a clinic appointment. These are unfamiliar options and users had to learn to experiment with these affordances offered by the platform for continuing follow-ups:

(They messaged) ‘How far are you getting along?’ and stuff like that. And I think it was a good prompt for me to say, ‘Actually, yes, I’m kind of getting through them (the tablets prescribed) because I’ve had this many outbreaks, and now I need to come back to you and chat about it more’. (participant 2)

The reliance of the interactions within this service on text and photographs offers further temporal affordances that in-person care does not. Service users can keep photographic records to show changes in the lesion or keep advice given in text messages, unlike the verbal exchanges that happen in clinics and are usually only documented in the medical record kept by the health service. One participant mentioned that they had kept copies of the photographs they had submitted, and others reported that saving the text message communication with SH:24 clinicians. They sometimes referred to these messages during the interview. Such materials operated as an informal medical record, saved on people’s smartphones.

The tension between anonymous and personalised care

Service users also valued the disconnection in time and space with the clinician who assessed their genital photographs. Although the clinicians know basic details about the service user (name, age, ethnicity, clinical history) they have limited knowledge about their appearance or behaviour except for clues from the photographs and text message interactions. Similarly, users know little about the clinicians. Photographs and the names of the clinicians are provided on the SH:24 platform but which of these individuals completes the assessment of their photograph is not shown. This is more anonymous encounter than is experienced in a face-to-face sexual health examination, which may generate feelings of embarrassment, shame or stigma (Cook 2011; Newman et al. 2020).

Users reported going online to avoid the ‘overwhelming’ feeling of walking into a clinic and navigating reception and the waiting room, the consultation and the examination. The sense of exposure is significant even when staff are friendly and accommodating but participants acknowledged that staff could also be judgemental.

I don’t have to go and see anybody I don’t know face-to-face, so there was kind of reassurance that I was a little bit happy about. To have to sit there … and explain it all and show people things, that’s not nice. … I would have done it if I’d had to obviously, but it would be a big thing. I would be sweating, palms, I know what I’m like, I’d be panicking inside (participant 7)

And sometimes like people are sassy in those rooms. Like even I’ve had someone took my blood and they’re like, ‘Have you have unprotected sex?’ and I was like, ‘No’. She’s like, ‘Sure about that?’ She just gets sassy. (participant 6).

By contrast, while taking a photograph of their genitals may have been a difficult technical exercise, people felt less vulnerable when sending it through to a faceless clinician.

I think possibly it’s less uncomfortable to just send a photo, because it is more anonymous – even if it has your name attached to it …. Because I don’t know who sort of did the diagnosis in this case. (participant 8)

However, for some participants, moving assessment of lesions from an in-person examination in a clinical setting to the examination of a digitised image created new concerns since that latter required a process of taking photographs that could itself compromise the privacy of diagnosis and treatment. In some cases, other people personally known to service users were implicated in the interactions that were part of their attempts to achieve an accurate photograph. For example, one user took the photographs in the toilet at work and the flash went off as someone else entered the area. Another participant reflected on whether it would be appropriate for a partner to help with taking the image.

Configuring digital privacy

When sexual health information goes online, the potential for sensitive data to be hacked or inadvertently breached is present (Newman et al. 2020). However, although the anonymity offered by online sexual health services such as SH:24 is dependent on the maintenance of strong data security systems, very few participants expressed concern about data security or described checking the digital security of the site. Some people reported uploading the photographs and then having a momentary sense of concern, but most trusted the reassurances about security on the SH:24 platform. They assessed the ability of the service to provide the diagnosis and treatment requested, the presence of a National Health Service logo, and the involvement of health professionals working for the service as signs that data security was adequate. As participant 2 put it,

I think it’s a very scary feeling just to put some irritated genitals on the internet and hope for the best …… I did have trust and confidence in the service because there were follow-up messages. So there’s those follow-up texts, ‘How is everything working?’

In contrast, users were more concerned that the usability (or lack of usability) of the SH:24 digital interface combined with their ability to control their technologies (smartphones) might compromise their digital privacy. Some were concerned about losing information or images from the digital interface due to inactivity while they took the photographs. Others were concerned that with several tabs open on their phones, working on a small screen might result in photographs sent to the wrong place or that messages from the service might be visible to others as they appeared on their phones.

I guess you’ve got to do it on your phone because you’re taking a photo. So, maybe the, you know from like a website point of view, maybe the buttons are quite small. And obviously I didn’t want to take a photo and like accidentally send that elsewhere. I was confident in the brand, actually. I thought I, yes, I felt like that would be fine. (participant 5).

These concerns added to the stress of the self-managed elements of the interactions of users with the affordances of SH:24. They underlined how the automated responses from the platform that acknowledged receipt of the photographs in a timely way were very important.

When automated care is not enough

In participants’ accounts, there was an expectation of care from digital services including care enacted during the design of the service, through automated features and through personalised, responsive interaction. When the usability of the interface offered by the service was good, users acknowledged and appreciated this, experiencing it as a sign of care that engendered trust. However, at key moments in their use of the service, users sought the overt engagement of human clinicians. For Participant 8, for example, the affordance of direct text messaging with the clinicians answering their questions was important to their experience:

I asked specific questions. And I got answers back. I think it’s just that sort of one-to-one, you know, like talking to a doctor, that you can tell that it wasn’t an automated message … when I was writing back and forth, like it was clearly someone writing.

The obvious engagement of humans in the digital service seemed particularly important when a diagnosis is made, when users are told that the lesion they were concerned about was normal and the care episode was closed or when they were unable to upload photographs that are sufficiently clear for diagnosis and were referred to a clinic. At these times, users expect an empathetic and supportive response and a rapid transition to care that was personalised, that explained and contextualised the response from the service, and which offered practical information on next steps.

The feedback on the photos was, ‘Oh yes, sorry, we’re not going to be able to help you at this time’. There was no sort of personal touch. Not saying that everyone has to sit on the phone with someone for hours and hours. But, you know, it was just very – yes, ‘What do I do now?’ sort of thing. Yes, so… there was no clarity to why they’d decided not to help or why they can’t. So maybe if you just got given some reason, or even if it’s like a tiny reason: ‘the picture wasn’t clear’, or, ‘we’re not too sure…’ Because you can imagine how a person feels, probably like really embarrassed. And like, yes, already you’re feeling not great with what’s going on. And then you’ve been told that they can’t help you and you’ve gone through all of that and there’s just nothing (participant 7).

This account emphasises the affective responses – feeling ‘not great’ and ‘really embarrassed’ – that were generated when a relational connection that had been established with and through a SH:24 clinician appeared to be broken or weak. Service users placed a significant degree of trust in clinicians by uploading their sensitive information and could feel very vulnerable when awaiting a diagnosis.

… because it is care, it is a care service that you are providing, and if you just have that little bit of, ‘oh okay, it’s not all doom and gloom, I’m not going to have to sit here with this herpes’, I think it would make a massive difference. (participant 7)

Discussion

In a new world of digital health services, expectations of care are still being negotiated. In this study, we investigated processes of care through detailed observation to understand their implications for clinical safety, user experience and service design within digital health care. As digital services change the practicalities of health service delivery, new possibilities for health care are both created and closed down. Adopting a more-than-human approach, our analysis describes how digital services change familiar strategies for caring as the multisensory elements of in-person diagnosis and treatment are limited and new opportunities for caring-at-a-distance emerge.

Creating care in this context requires new processes of invention as humans and nonhumans work together within digital and non-digital spaces. These accounts by SH:24 service users demonstrate the complex interactions of humans, platforms, digital devices, other nonhuman agents and place and space. Finding and engaging with the SH:24 platform involved a set of competencies and invisible labour from service users. The journeys to the online service described by participants show a complex system of face-to-face and digital care with few connections between them. Once engaged with the digital service people used unfamiliar modes of communication with clinicians, including text messaging and the uploading of highly sensitive personal information such as descriptions of sexual activity, symptoms and images of their genitals.

New experiences of care at a distance were most clearly seen in the apparent contradiction between the value of both anonymous and personal elements of care. Anonymous care, where there is a disconnect in time and space between the user uploading the photographs and the clinician assessing them and there is no visual or haptic contact between them, was valued because it reduced the affectively overwhelming aspects of in-person clinical examinations and changed the potential exposure to negative (impolite or judgemental) responses from clinicians. The distance that this generates may not be ‘disengaged’ (Puig de la Bellacasa 2017) in this context, where clinicians pay close attention to the photo-diagnosis process, but it may relieve the affective stresses of in-person diagnosis. However, at key moments, personalised care, where clinical advice and support is offered in a way that signals the presence of humans, and offers engagement with them, is expected and valuable.

The idea of distance within clinical encounters is not new, but its value is often framed in terms of the boundaries of clinical relationships that ensure that professional codes of conduct are maintained. The value of distance in standard clinical processes such as diagnostic examination is used to maintain boundaries within a process that contravenes the rules of normal social interaction (General Medical Council 2013). It is only when care delivered by collaborations of humans and nonhumans offers an alternative that the value of distance is made visible and a ‘scale of closeness’ is offered where users may choose a level of human engagement that is potentially responsive to needs. This may be an automated text message at the time of uploading the photographs or a text conversation with a clinician at the time of the diagnosis.

This finding is consistent with recent work on HIV testing apps that highlight the strong affective components, both positive (comfort, relaxation, care) and negative (fear, frustration, worry) associated with their use. In this context, users also valued the anonymity of the app but were disappointed in the lack of nuanced and responsive care it could offer (Janssen et al. 2021). Within the setting that we studied, human clinical support was available but not sufficiently responsive to changes in the level of human engagement preferred. We found the same expectation of care and disappointment when it was not available. We note that the disappointment was particularly significant concerning transition into and out of a service: for example, making the decision to upload photographs; managing the information that the lesions that were causing concern are normal; or managing a clinical referral because a diagnosis could not be made from the photographs.

We also note that positive relational experiences of care at a distance rely on a practice of care that separates the time when humans invest care and time when nonhuman agents deliver that care. For example, practical tips on how to use a treatment are written by humans at the time of service development and delivered by machines when they are needed and stored on phones for future reference. As with the clinicians’ assessment of the personal photographs, distanced care does not mean that humans are absent or disengaged from the care process, just that their input is separated in time from the moment of delivery. Understanding and valuing the human input in apparently distanced care is important in describing care within digital service delivery. Care at a distance relies heavily on self-care and in our case study the process of taking photographs was difficult and stressful for some (although often less overwhelming than an in-person examination). Users felt badly let down when their efforts did not generate the intended result: for example, when the photographs were of insufficient quality to make a diagnosis. Acknowledgement and support for self-care within digital health services is an essential part of care within this context. Failure to do this risks replicating the invisibility of self-care labour commonly found in other health care settings (Oudshoorn 2008).

Concluding comments

Our analysis asked how sexual health care can be re-thought in an environment where objects entangle with human bodies to generate affective forces and relational connections that open up or close down possibilities to achieve wellbeing and good health. Early iterations of telemedicine used video consultations that sought to re-create a traditional consultation where clinicians and service users are visible and present at the same time if not the same space. Subsequent iterations of telemedicine have drawn from other contexts such as social media, delivering asynchronous, text-based consultations. As new spaces for clinical interaction are generated, paying attention to emerging practices and configurations of care becomes important.

Acknowledgements

We are grateful to research participants and the thoughtful comments of the reviewers.

Disclosure statement

Paula Baraitser is medical director of the online sexual health service, SH:24.

Additional information

Funding

This research was partly funded by a King’s Health Partners Research and Development Challenge Fund Grant.

Notes

1 The service was awarded a Beazely Designs of the Year Award, a UKUX award, and a public service award by The Guardian newspaper.

2 Additional material to support our findings is available in the online supplementary material published with this paper