Digital Trust: An Analysis of Trust in the Adoption of Digital Support Services

Design-led ethnography

Our methodological approach was rooted in agile and iterative design-led research and user-centred participatory design. To begin, we established a set number of questions based on our ultimate aims and to guide our process.

Many of our questions revolved around how the service could be designed to engage all actors involved, and how the system could mediate patient and doctor relationships over time. We worked with naturally occurring care groups – with a set number of patients and the practitioners who regularly cared for them. We identified participants across geographies in London, UK, and Berlin and Frankfurt in Germany.

Sensitivity to the contextual environment meant that we gathered behavioural experience alongside attitudinal and usability data. Our mixed-methodological approach was grounded in real-world settings – the home, the GP surgery, the hospital – that acknowledged the complexity of the condition and the health care system within which we were intervening, as well as the fragility of how trust is negotiated across these plural spheres. Semi-structured interviews, diaries and observations happened in all of these places at two-week intervals over the course of eight weeks in two phases of research.

We nested a working prototype directly in this flow of care. It was designed as a home-based GSM connected device for patients, as a clinician-specific interface available on desktop and mobile devices, and with the ability to be tested through clinical trials and regulatory and standardisation bodies.

As we embedded the telehealth system in daily life – sitting in patient home kitchen-tops, living room tables, and GP surgery desks – the stimulus that we presented was always made to feel real in order to elicit a reaction that would be as just as possible to everyday experience. Design was thus actively used as part of the research process, in parallel to shaping the product itself.

We were also aware of our agency as researchers. We acted as IT support, taking on a role that was integral to the service itself, and using impromptu visits to fix digital bugs as chances for informal observation. Instances of hospitalisation broadened the field further, and as neighbours dropped by, care worker conversations were joined and routines were revealed. In this way, as roles blurred between service delivery and service research, the researcher’s position extended towards interventions of an active and engaged ethnographic kind, much like the practice of ‘correspondence’that Ingold and Gatt (2013) describe. Whilst ours was not classic participant observation, elements of our process echo this ethnography that is a holistic and transformative project.

Following this, participants’ experiences also intentionally informed the research and design process. Through a continually reflexive exercise, their perspectives enabled us to challenge and reassess assumptions and directly adjust prototype designs with each iteration. The process draws parallels to the practice of design with anthropology that Gunn and Donovan (2012) speak of: rather than one discipline in service of the other, design and research acted in a mutually constitutive dialogue alongside participants, whose agency equally shaped the outcomes, bringing about more sustainable forms of engagement.

Everything was documented through film, field notes, and audio recordings and captured in a multi-media online platform. Anecdotal real life stories were then collated with quantitative usage data from software analytics to give a textured narrative. It revealed rich contextual understandings, meaningful designs and facilitated regular open conversations with the commercial, technical and research teams at Novartis.

The everyday life of COPD

The patients who participated in our project represented the typical COPD profile in primary care: men and women aged 50 to 95, with COPD categorised as severe or very severe.

Like many with COPD, a number of patients suffered from other illnesses (Boeckxstaens et al, 2012). Daily routines involved streams of medications administered, care workers in and out of the home, hospital appointments puncturing otherwise uncluttered calendars on the wall. Co-morbidities blended into one another. When we first met, some patients were unable to distinguish COPD symptoms or medicine from those related to other ailments.

However, COPD was a constant presence both inescapable and irrevocable. The daily effort to breathe and irreversible nature of the condition generated apathy towards exercise or smoking – the former known to prevent exacerbations and the latter the leading aetiology. Patients were adamant to ‘get on with life’. Homes drew windows closed to stave off cold air sharp to the lungs, capturing in the smell of cigarettes – ash trays hidden though butts and ash trailing surfaces. While COPD was seen to constrict possibilities, it was also dismissed; a presence, though ubiquitous, met with passive disengagement.

Amongst this older demographic, technology use was constrained. Although we saw a range of competencies, despite familiarity with emerging technologies many patients were novice digital users.

In the stories that follow, we focus on a few specific patients. All are given pseudonyms, and personal details are amended for anonymity.

The lifecycle of trust

During this project anecdotes of telehealth adoption, immersion, and rejection emerged to shape an image of technology and self-management engagement with ambivalent and multiple experiences of trust.

To hang our findings, we suggest thinking of trust as existing on a continuum that extends from faith (Hart, 1988), familiarity and confidence (Luhman, 1988) and tends towards uncertainty, scepticism and distrust. It depends on conditions environmental (e.g. cultural, societal, physical, political), behavioural and psychological. At each point, benefits and risks are balanced in evaluations that reinforce or erode trust.

Along this trajectory, six key insights emerged:

1. ‘As if’ trust
2. Mediating expectations
3. A portal to social relations
4. Supporting healthcare practitioners
5. Domesticating the medical
6. Active self-management

These are elaborated in full below.

‘As if’ trust

From the start patients’ engagement with the service measured scepticism in the unfamiliar with motivation for self-management. Doubts revolved around technical competence, as well as concerns about data privacy.

But for most patients the device promised a hope they had never before been given: the possibility of slowing illness deterioration, of independence – otherwise slipping away. And for many, this was incentive enough to begin service use.

Samuel lived alone in a South London estate, with a community of neighbours who looked out for each other. Having suffered from COPD for years, Samuel thought that no assistive technology could support him beyond his existing routines. Still, when describing his needs Samuel defiantly spoke of how the service could return the independence he so craved, “I like to be independent and I’d like to be able to put in that I did it, instead of people doing that for me.”

Adam lived in a similar setting. Occupying a single flat in London’s East end, Adam’s COPD was very severe. When asked if the involvement of a pharmaceutical company worried him he said, “If it helps me, of course not!” It could be that Adam’s dismissal of privacy risks was less due to deliberate calculation and more reflective of a deference towards the healthcare system, common amongst this older generation (Campbell et al, 2001). Clinicians, on the other hand, did acknowledge the potential threat to privacy and questioned the motivations of a pharmaceutical company’s involvement. Nonetheless, Adam’s response hints at a simple determinant of service engagement: the answer to the question, “will it help me; is it worth it?”

Both Adam and Samuel thus began using the service. They willingly shared personal data about their condition, as did other participants. So, even though trust might not necessarily have been present, motivation was sufficient to act as if it was there. This leap of faith echoes Gambetta’s (1988) study of the Sicilian mafia: when the conditions for trust are absent players act ‘as if’ trust exists to ensure fluid social worlds.

Here, patients’ tentative first steps led to service use into following weeks. Acting ‘as if’ trust opened up the possibility for a deeper form to eventually be forged.

Mediating expectations

Patient engagement was further determined by expectations about what a digital service should deliver and how it would deliver it. An awareness of connected devices, touch-screen technology and personalised apps led to anticipations that the system would be similarly advanced: the system should be smart and it should be personalised to them. In fact, for many patients, the outcome of system smartness was a tailored service.

On a daily basis, this meant that intelligent analysis of patient inputs (answering questionnaires about their condition, selecting icons to represent activity completed that day) should enable the system to learn about them and personalise messaging and advice in return.

When the system did not do as expected, patients remained sceptical: a lack of personalisation was a signal that the system was not smart. Samuel, for instance, spoke with frustration when the system failed to acknowledge personal daily experience, “I’d like to be able to add more, like what you’ve done. I’d like to say that I’ve been able to go to Iceland [a low cost supermarket].”

Conversely, when patients observed interactions that resonated, familiarity and responsiveness nurtured trust. Asked about service accuracy, one patient said, “Yes, it is good. For example yesterday it was back in the normal range again. Three days before the scores had worsened. No wonder, because I could not breathe well and it is good if you always fill that in.” And you think it understands that? “Yes, you notice the differences.”

Equally, however, fulfilment of expectations also brought a risk: when the service demonstrated smartness, personalisation, and successful self-management, some hopes were fuelled so much so that telehealth was seen as able to abate exacerbation patterns altogether.

Adam was hospitalised during a cold rainy week in November. When he returned home, he talked of his disappointment in the system. “It didn’t spot my exacerbation (…) the machine should do that – alert to the fact that something is wrong and say ‘I think you better seek medical advice’”. And yet, Adam picked up service use immediately when back from the ward. Experience of being let down was balanced with hope for the future, and the latter won. In his ambivalence – between his words and later action – Adam showed himself to have simultaneously lost trust and yet act ‘as if’ he trusted still.

Samuel also experienced an exacerbation that led to a week in a hospital lung unit. He spoke about the ensuing apathy, “For a day or two when I came home from the hospital I wasn’t up for it, just not in the mood for anything.” Before this interview, Samuel was smoking a cigarette. Bashful, he explained, “I even started smoking. Just from boredom, I’m fed up”. Samuel’s receding trust in the system linked to this broader loss of motivation.

At the beginning of the project, and during each scheduled interview, the premise of the service had been repeated to patients – so the overreach of expectations was not a matter of lack of awareness or education. Perhaps, however, given the patients’ generation, lapses in memory occurred, or previous digital experience was so limited that far too much hope was invested in this new piece of technology – regardless of what might have initially been promised.

Moreover, neither instance should be seen as unique. In COPD exacerbations are inevitable. Depression rates are especially high (Schneider et al., 2010), hinting at weaker motivation for self-management and greater incidences of exacerbation (Quint et al., 2008). So if additionally faith in telehealth soars beyond the capacity of the service, at some point trust will be lost: it’s not a matter of whether this will happen but when. The daily reality of living with the device will always be evaluated against expectations. At times – even for the same individual – the comparison may generate a perfect fit. At others it might reveal a gap that begs to be filled. Any digital support service for COPD must therefore continually mediate and build in sensitivity to the diverse expectations and experiences that a single patient – let alone the breadth of a population – will have.

A portal to social relations

Beyond its core functionality, the system took meaning in patients’ lives because it was integrated in care networks. The service only worked when appropriately embedded in social relations.

Many patients gained reassurance just from knowing that they were being monitored by someone who cared; even if no action was taken, even if that person was unknown.

This was very much the case for Charles. Living in a single London council flat, few friends and family out of town, he kept blinds closed and was mistrustful of his carers. Nevertheless when asked who had access to the information he provided the system he said, “I haven’t a clue! (…) It’d be nice to know that someone is looking after you, even if it is on the other end of the cable.” Despite its abstract level, the clinical relationship symbolised had clear impact.

Little value was seen in the service if this connection was not felt. When both Samuel and Adam were hospitalized, for example, part of their disappointment revolved around a perceived failure in the system to facilitate immediate support from their care workers. During these instances of potential lapse, patient re-engagement was all the more dependent on healthcare practitioners adequately responding to their role in the system.

This was expressed in an exchange with a UK pulmonologist, “I think it’s getting people that they trust back involved and in contact. So ultimately if they are already in a care group, they know [community nurse] very well then that phone call makes a huge difference […] I think having that personal touch is very important”. Patient interactions with the digital service mirrored the growth of trust and social relations with their healthcare practitioners in the real world.

Given that the device also sat in people’s homes, it became part of informal social networks as well. A novel thing, an intrigue, it was a focal point in discussions with neighbours, friends who were informal carers, and family members. Some even helped the patient interact with the system directly. Samuel had problems with his eyesight; on most days a neighbour would sit with him to read messages and make daily entries. As a home based self-management system, telehealth acted to collectivise care as well as put it in the patients’ own hands.

Supporting healthcare practitioners

Clinicians’ trust in the service also depended on how it connected them to patients and gave value to the day-to-day.

At first they were concerned that telehealth would undermine their relationship with patients and automate their role in the care system. Some clinicians feared it would add further administration to paperwork already weighing them down. As a new technology infringing on their profession, the telehealth service posed a threat to their sense of power and control.

A doctor in Germany voiced this reticence, “Isn’t the relationship between the patient and doctor still most important, without an intermediate device in between?” A UK nurse similarly stressed the importance of maintaining a human connection, “With patients with COPD, when they have exacerbations, what they need is reassurance, somebody to be there, somebody to talk them through the exacerbation stage when they’re scared that they can’t breathe. Would this be able to provide this for them?”

What many clinicians found, however, was that instead of replacing their job the service helped them do their job. According to a German doctor, “First I was worried – ‘Oh my goodness, what have I got to do every evening?’ But it wasn’t like that, it was brief and clearly laid out […] For this message, ‘didn’t take meds for 5 days’, I would need to know it more precisely, has he been delayed for 5 minutes or 5 hours? This makes a big difference.”

Once healthcare practitioners began using the system they saw it as a new source of knowledge. Beyond reassuring them about job security, valuing the system for its information demanded trust in patient reported outcomes. Clinicians who doubted the accuracy of patient reports were equally in doubt about the service itself. The design of the clinical interface therefore aimed to imbue trust in it as a valuable tool: clear and efficient overviews of patient data along with granular detail gave clinicians a sense of control in analyses, and as a result enriched understandings. At face-to-face interactions clinicians were then able to have more meaningful conversations with patients based on knowledge of their recent condition history – data that otherwise might have passed unknown.

Domesticating the medical: the meaning of telehealth in everyday households and lives

With the device firmly integrated in social care networks, the home environment within which interactions took place shaped patient sentiments. Domestic settings were already filled with medical technologies. Pillboxes and prescriptions covered living rom tables; oxygen tanks sat next to sofas, and beds, baths and toilets were wrapped in assistive technologies more akin to hospital rooms than the home. The invasion of material artefacts from the clinical sphere into home life was all too familiar.

Compared to these explicit medical things, the system seemed far more neutral. Looking more like an iPad than a clinical monitor, it adopted an informal tone of voice and spanned generic topics (e.g. physical activity, the weather) in addition to symptoms and medication. As a medical service that appeared less medical than the usual, it was perhaps more easy to accept. Charles at first said, “I’ll give it a go, it’s just like a normal routine thing.”

After three months within this domestic environment, telehealth became a part of daily routines and seemed to act as a companion – almost anthropomorphised. Thinking about the prospect of no longer using the system, Charles observed, “I’m used to it […] I’ll miss not doing it. I look forward to that light coming on at eight o’clock.”

Like Charles, Edward lived alone in a London flat. He often mentioned his family who lived abroad. A sprightly 70 year-old man, Edward’s COPD was increasingly a daily burden. During a later interview, Edward looked at the device fondly and said, “strangely enough the [telehealth system] has been a comfort for me and I feel I have a contact (…) you feel you’ve got an outlet (…) I still think of it as an old friend.”

Both socially isolated, the service filled a void in the lives of Charles and Edward as a social entity in itself. The tangible qualities of the device – its informal look and tone, its aesthetic similar to lifestyle technology brands – enabled it to become a part of the home ecosystem. As the device was creatively appropriated as friendly companion the medical was domesticized. Even Samuel echoed this sentiment. Asked if he would miss the device, he admitted, “nobody will miss it except for me”.

Active self-management

Embedding the system in daily routines led to new routines created in turn. Now a positive habitual presence, patients’ trust in the system developed into a form of self-confidence in their own ability for self-management. Along the way telehealth became a conduit for education and behaviour change.

Patients spoke about how the service helped them exercise more. In a conversation with Edward, he said, ““this sort of kick-started me into becoming more active”; it was “giving me new ideas” about how to manage COPD. Encouragement from the service supported every new step, “it gives me a certain amount of satisfaction (…) at the end of the week it’s like a pat on the back.”

Patients did continue to rely on the system somewhat passively: a desire for system smartness and personalisation meant that they expected it to do a significant amount of work for them. Still, interactions came to develop new meaning, where the locus of responsibility for COPD management tipped in favour of patients’ on control. Over time these became moments where patients took a more active role in their healthcare – discrete periods of intervention which evolved to permeate regular life. The daily psychological and physiological reflexivity that the service brought opened up the possibility for patients to change routines to improve their condition, to gain more knowledge, and to feel more empowered that they could do something as a result – all the while engendering a greater sense of agency, control and awareness of their bodies and their selves.