A digital advocate? Reactions of rural people who experience homelessness to the idea of recording clinical encounters

Abstract Background Are the benefits of recording clinical encounters shared across different groups, or do they vary based on social position? Studies show that educated patients record their clinical visits to enhance their experience, but very little is known about recording benefits among “hard‐to‐reach” populations. Objective To examine the reactions of homeless people to the idea of using a smartphone to record their own clinical encounter, either covertly or with permission from their physician. Method We conducted semi‐structured interviews with individuals at a temporary housing shelter in Northern New England. A thematic analysis identified themes that were iteratively refined into representative groups. Results Eighteen (18) interviews were conducted, 12 with women and six with men. Initial reactions to clinical recordings were positive (11 of 18). A majority (17 of 18) were willing to use recordings in future visits. A thematic analysis characterized data in two ways: (i) by providing reliable evidence for review, they functioned as an advocacy measure for patients; (ii) by promoting transparency and levelling social distance, this technology modified clinical relationships. Discussion Recordings permitted the sharing of data with others, providing tangible proof of behaviour and refuting misconceptions. Asking permission to record appeared to modify relationships and level perceived social distance with clinicians. Conclusions We found that while many rural, disadvantaged individuals felt marginalized by the wide social distance between themselves and their clinicians, recording technology may serve as an advocate by holding both patients and doctors accountable and by permitting the burden of clinical proof to be shared.

with others. This seems particularly true of encounters where there is complex information to consider, such as in changing medication or following new advice about treatment. 4 Few studies have examined the extent to which patients are recording clinical encounters, 5,6 yet there are indications that recording might be occurring more often than previously thought. 2,7 Could it be that the willingness to record, to anticipate the potential benefits, is predicated on social position? In an earlier survey, more education was associated with more willingness to request permission to record overtly, and covert recording was more likely to be undertaken where there was more distance between the social position of the patient and the professional. 2 Qualitative work has found that patients from educated and wealthy strata hesitate to ask questions and disagree with medical professionals. 8 It is likely that this hesitancy is even greater as social distance increases. 9 Might it also be possible that the use of technology to empower patients-patients using smartphones to record-is also affected by social distance? Or might the use of a technology to record a clinical encounter-given that it may not require as much interactional assertiveness-leads to patients feeling more in control?
Tools that have been advocated for use at the point of care to improve patient-clinician interactions may help to reduce social distance. 10 Yet, few studies have explored their benefits among "hardto-reach" populations. 11 We know that educated patients have been using technologies like smartphones to record clinical encounters, sometimes covertly. 1 Rationale for this among activated patients appears based on a lack of trust and previously negative experiences, as well as a fear of being denied permission to record and/or losing access to care as a result of asking to record. 2 According to Good,12 fervent belief in technology mimics what she calls the "medical imaginary," the idea that medical innovation offers solutions, when real change is often onerous and time-consuming. In the light of Good's concepts of the "medical imaginary," we wanted to explore reactions to the idea of using smartphones to record clinical encounters among the most disenfranchised-those who have experienced housing insecurity. While some patients benefit from recording their clinical encounters, we could not find any studies that have explored this issue among the most disadvantaged. We were interested in understanding the potential for recording clinical encounters as a patient empowerment strategy among economically vulnerable, rural populations.
The aim of this study was to examine the reactions of homeless people to the potential of using a smartphone to record their clinical encounter, either covertly or with permission.

| Setting
We conducted a qualitative, semi-structured interview study with residents of a shelter for those who need temporary housing because of homelessness, located in New England, USA. The shelter serves over 10 000 people a year and provides temporary shelter, programming, food and clothes for families and adults in need. It has the capacity to house eight families, and typical stays for families are 2-3 months. A majority of guests leave the shelter able to find and maintain permanent housing.

| Method and data collection
Because we wanted to explore detailed views about a pre-specified topic, we elected to use semi-structured interviews (Fig. 1). Qualitative interviews 13 "foster learning about individual experiences and perspectives on a given set of issues" (p. 314), and we were interested in how the residents would react to the idea of using smartphones to record encounters. Patton 14 states this method "…begins with the assumption that the perspective of others is meaningful, knowable, and able to be made explicit" (p. 278). We therefore designed our interview schedule to be neutral about the topic (see Appendix). This enabled us to characterize reactions to the idea of recording clinical encounters and to explore what, if any, support participants might need before they consider using recording technologies in clinical visits with their doctor. We also asked participants about harms and benefits of recording, if they would be willing to record covertly and if it is something they had ever consider doing. Further, we asked how a recording might be useful and whether they would be willing to try recording a clinical visit in the future. Interviews were recorded and transcribed.

| Recruitment and data collection
We wanted to talk to individuals who had experienced either an acute housing crisis or long-term situational poverty. Previous work with homeless populations suggested that individuals in these situations have limited access to health care and poor continuity of care, experience fragmented and uncoordinated services and used emergency departments for primary care. We planned to interview 30 such individuals. We received institutional review board approval from The Dartmouth Committee for the Protection of Human Subjects (CPHS) to conduct this research.
After receiving ethical approval, we recruited shelter residents with volunteer shelter staff. Participants were eligible if they were 18 years or older and lived at the shelter. The research team gave study information to potential participants, who read or were told about the study and were offered time for questions. Residents interested in participating were consented by the research team (SG, MC and IG), interviewed and recorded. Following the interview, participants received a $10 gift card.

| Data analysis
We conducted a thematic analysis of interviews. 15 Interview transcripts were read, qualitatively coded, reviewed and labelled. 16 Qualitative coding 17 "mean[t] naming segments of data with a label that simultaneously categorizes, summarizes, and accounts for each piece of data" (p. 43). The initial stages of coding involved a process of labelling portions of text to identify and formulate ideas, themes, and issues. 18 Coding is the "pivotal link" between data collection and interpreting the meaning of qualitative data. 17 Through on-going immersion in the data set, members of the team (SG, MC, ECS) advanced to "focused coding," which utilized the prominent themes as the basis for more fine-grained analyses. 18 Throughout discussion and consensus, broad conceptual codes were gradually refined to ensure that our analytic categories were credible and "trustworthy". 19

| RESULTS
Our initial goal was to interview 30 participants. As we began the iterative process of analysing data, we felt that we had reached saturation by participant 15, uncovering no new information or nuance in individual accounts. However, potentially due to our recruitment strategy, waiting in common areas and talking with potential participants over coffee, there was strong interest in participating, sharing points of view and reacting to the importance of technology. We noticed quickly that most potential participants approached our research team out of curiosity. Many conversations began in the common areas, suggesting that the topic, using technology to improve communication with the health care system, was salient and meaningful. Recruiting in the common area, meeting people face to face over coffee, challenged notions of social distance. It also proved to a superior recruitment method compared to initial efforts that relied solely on posters, fliers and shelter staff.
Eighteen interviews were conducted, lasting between 15 and 30 minutes. Twelve were women and 11 were between 36 and 60 years of age (Table 1)

| Recording technology as an advocate
The interviews revealed a palpable social distance between participants and their doctors. Given the nature and context in which many of the participants lived-often noting financial insecurity, cost fears and rampant mistrust-recording technology was seen as a means to prove they deserve to be taken seriously. One participant commented "if you can't have an expert with you, the tape recorder is excellent," (ID15).
The notion of verifying the clinical visit with a recording was seen as "a smart idea," and if done openly, may change how medical professionals perceive them.

I know from my own personal experiences, things have been twisted or overlooked… it's their word against yours.
And, them being a doctor, who they going to believe? Some

| Review or share visit
The most salient reaction to recording was using it to review and rethink the visit. The desire to use recordings to certify unmet need offered a new opportunity-having control over an aspect of their life normally out of their control.
Not only was a recording seen as useful for memory, there was also a recognition that listening to yourself (either the doctor or patient) could disrupt normative thinking enough to modify behaviour.

| Transparent verifiable visits
Having a record of a conversation was seen to assure transparency in the encounter, as one participant said, "Without the device it's a he said, she said" (ID9 The covert use of recordings was widely rejected as being "sneaky," "I firmly believe in honesty, straight forward. It's better to get an honest kick in the butt than a sweet lie" (ID11). Authenticity and direct communication appeared to matter most.

I don't go for the business of sliding something in my pocket book or in my pocket and recording because that's
being sneaky… like you're trying to entrap them.

(ID15)
When asked to clarify differences between overt and covert recording, one participant commented on capturing the "whole truth" as opposed to one constructed in full view. "If you're recording it privately you might hear the whole truth of everything, how these people are very dismissive, is that the word?" (ID2). However, given the option, recording openly was preferred.

| DISCUSSION
We found that recording technology may not only serve as an advocate for the most vulnerable, it also has the potential to improve clinical practice. A majority believed if recording was done openly, it could be used to review or share clinical experience, overcome clinical misconceptions and be seen as good, reduce social distance and ultimately improve their relationship with their doctor. Unfortunately, many rural disadvantaged are further marginalized by a significant social distance between themselves and their clinicians, which creates a dynamic where many individuals feel insecure, needing to "prove" their worth. In our sample, a majority believed recording openly or with the clinician's permission was necessary for achieving potential benefits and expressed deep concern that if they hid recording activity from doctors, they risked being seen as "sneaky," further contributing to insecurity and mistrust.
Being perceived as deficient provoked a lack of confidence and perpetuated misunderstandings about social standing. As one participant said, they would be more inclined to record a visit if they felt they were being ignored. It was not a need to catch the doctor at fault, but rather to prove their value and experience. There were strengths and weaknesses to our method. We col-

| CONCLUSIONS
While recent attention has focused on use of recordings in clinical encounters to improve patient empowerment, we believe this is the first study to investigate this same question among those facing grinding poverty and housing insecurity in a rural area. Previous work found that among moderately educated and financially secure individuals, recordings enhanced the clinical encounter and added to feelings of empowerment and interest in reviewing and sharing recording with others. 2 Our findings support a portion of these findings, recognizing there are meaningful differences between social groups. The most striking difference is the perceived value of covertly recording encounters. In the sample from the UK, covert recording was seen as necessary to counter previously negative experiences, suggesting empowered patients may feel they are owed a certain level of knowledge and respect. Curiously, our findings revealed participants were much more interested in being honest and proving their worth.
We also acknowledge the anthropology of technology and concepts of the biotechnical embrace. 12 The overconfidence in modern technology, like recording tools to improve services, should be countered by more fully considering use and value before implementation. As demand for richer patient engagement increases, so should the need to translate patient context into practice. 20 Social asymmetries between clinicians and patients 21,22 prevent transparent communication. 23 We acknowledge foundational work in sociology and social psychology on the effects of social distance on patient-provider communication 24 as well as more recent contributions debating how these impact different groups. 25 A review of efforts to improve patient engagement suggest that many are tokenistic. 26 Short decision support tools provided to patients at the point of care have been shown to work as "flexible artefacts" to improve patient-centred communication. 10 These studies argue that although wide social and cultural distances influence social interactions and clinical decisions, interventions that change usual clinical patterns of communication are helpful at bridging these gaps. While recordings may not "empower" marginalized individuals, recordings seen as "artefacts" may help validate their lived experiences enough to disrupt clinical misperceptions.

| Practice implications
The clinical experience of individuals living on the margin is often shaped by assumptions. Evidence that power imbalances associated with patient-provider relationships can be used to heal 27  Would you be willing to try openly, and with permission, recording a visit with a health-care provider? Why/why not?