‘What are you hiding from me?’ A qualitative study exploring health consumer attitudes and experiences regarding the patient‐led recording of a hospital clinical encounter

Abstract Objective Health consumers (patients, their family, friends and carers) are frequently using their smartphones to record hospital clinical encounters. However, there is limited research which has explored the social interaction surrounding this behaviour. Understanding the consumer perspective is key to informing policy and practice. This study explored consumer attitudes and experiences regarding patient‐led recordings. Methods Semistructured interviews were undertaken with 20 hospital consumers. Participants were recruited via advertising, posters and invitation letters. Interviews were digitally recorded and transcribed. Data were analysed using thematic analysis. Findings Four main themes were identified relating to participant perspectives of patient‐led recordings: (1) consumers viewed clinician consent as important, although they reported different experiences of the consent process, (2) consumers indicated that a clinician refusing the recording had the potential to undermine the consumer–clinician relationship, (3) consumers were both uninformed and misinformed regarding relevant policy and legislation and (4) consumers expressed a number of expectations regarding their rights to record and of the health service in supporting this practice. Conclusion Consumers want to record their clinical encounters with the consent of their clinician but are unprepared to navigate consent discussions. Health services and clinicians should inform consumers who want to record about their rights and responsibilities, to support the consent process and safe recording environments. Clinician refusal to consent to a patient‐led recording may not lead to increased covert recording; however, clear communication about the reasons for refusing a recording is needed to protect the consumer–clinician relationship. Patient or Public Contribution A health consumer was part of the research team and was involved in all stages of this study, including the design, data analysis and reviewing of the manuscript.


| INTRODUCTION
Recording everyday events is synonymous with living in a smartphone society. 1,2 In high-resource countries, health consumers are using their smart devices to record aspects of their hospital journey, including encounters with clinicians. [3][4][5][6][7] When consumers initiate a recording of a clinical encounter, it is known as a patientled recording. 8 Despite a 40-year history of research which looks at the provision of audio recordings of clinical discussions, 5,[9][10][11][12] the topic of patient-led recordings is under-researched. To date, studies on patient-led recordings have sought to understand the prevalence of recording, 5,7,13 interest in recording, and motives for consumers to record, 4,7 the benefits and risks of patient-led recordings, 3,6,7,14 as well as enablers for and barriers to integrating recording into practice. 11,12 Although clinician hesitance to recording is wellestablished, 3,6,15 to date there have been no studies which have explored consumer attitudes and experiences with the consent process, and what happens when a clinician refuses to give consent to the recording. This study sought to further our understanding of consumer attitudes and experiences regarding patient-led recording, including the consent process, to inform patient-centred policy and practice. 16,17 While consumers are initiating recording frequently, the evidence suggests that clinicians are hesitant to accept recording in practice. [3][4][5] For example, a Canadian study (2019) found that only 27% (n = 20/110) of nurses and 30% (n = 11/36) of physicians felt that patients should be allowed to take videos within the emergency department. 4 A recent study of 360 oncologists found that, whilst most were accepting of recording, there were still 25% who reported they were uncomfortable and 15% who never or only selectively allowed a patient-led recording. 13 Evidence points to patient-led recordings being a topic of concern for clinicians, 3,13 therefore more research is urgently needed to balance the competing needs and interests of consumers and the health service.
In Australia, recording clinical encounters is legislated according to state or territory, except for telehealth/web-based encounters, which fall under Commonwealth legislation. (Telecommunications (Interception and Access) Act). 18 The main distinction between these laws is whether the consent of all parties is required. 8 In Queensland, where this study was undertaken, it is legal for a consumer to make a recording of their clinical encounter without the consent of the clinician. Consumers are legally able to share the recording with family and friends without the clinician's consent. 8,[19][20][21] However, it is an offence for a person to visually record another person in circumstances where a reasonable adult would expect to be afforded privacy, 21 and recording may be considered an offence if the act of recording is deemed to cause a public nuisance-which may apply in hospital settings. 20 The hospital policies, where this study took place, instruct clinicians regarding the consent process. They stipulate under what grounds a clinician may choose to give or refuse consent and provide insight into the legislation and clinician rights. Principles include whether the recording will impact on care or health and safety issues; consideration of the privacy of other individuals; restrictions regarding proximity to electro-medical equipment and within designated places (e.g., not in the operating theatre); and finally, that withdrawal of consent can occur at any time. 22 Given the complexity surrounding legislation and policy, it is possible that consumers have a limited understanding of their rights and responsibilities with potential implications for practice (e.g., consumers may require guidance from clinicians about where and when they may record).
However, with no current research into this issue, it requires further exploration.
In contrast, an audio recording of a clinical encounter that is led by a health service 8 is an empirically evidenced intervention and has been found to be valued by consumers and linked to positive patient outcomes. 9,10,12 Whilst there is less evidence which investigates patient-led recordings, early understandings have emerged around consumer motives for and the benefits of recording. Studies have found the recordings enhance patient understanding, enable shared listening with family and other supports, provide therapeutic benefits, allow for data ownership and evidence of the clinical encounter, increase accountability from the clinician and serve as a memento of a significant experience. 4,5,7,14 Patient-led recordings have been found to mirror the benefits of service-led recordings, which include increased recall and understanding, support for decision-making and increased patient empowerment. 5,7,[9][10][11][12] Although clinicians recognize some of the benefits of recording, 3,12,13 clinicians cite several concerns of patient-led recording, such as confidentiality risks, potential changes to the consumer-clinician dynamic and possible medico-legal ramifications, which can act as barriers to consenting to the recordings. 3,5,12 Previous studies have sought to investigate ways that recordings can be integrated into service, including the use of clinical champions 12 or the use of a smartphone app which aims to mitigate some of the medico-legal fears held by clinicians. 11 However, a recent study suggests that these may RYAN ET AL. | 3097 not necessarily support the integration of recording within the broad spectrum of clinical scenarios in the hospital which consumers wish to record. 3 Furthermore, clinician refusal of the recording has been linked to increased covert recording. 3,7 Covert recording is when a consumer makes a recording without the consent or knowledge of the clinician. 8 Whilst covert recording of clinical encounters is occurring, 7,23 there is limited research into the consumer perspective on this topic.
There is a dearth of knowledge about the experiences and interests of consumers regarding patient-led recordings within a broad range of situations and a lack of knowledge about consumer perspectives relating to the associated social exchange, such as the consent process. This has prompted our study, which focuses on answering the research question: what are consumer attitudes and experiences regarding recording a clinical encounter?

| METHODS
To explore this topic, a social constructionist paradigm was used, which maintains that reality is constructed through relationships and interactions with others. 24 Therefore, to understand a constructed reality, one must explore the meaning and truth that people attach to a phenomena. 24 The aim of the study was to explore health consumers (patients, their friends, family, or carers) perspectives related to recording their clinical encounters in the hospital. This study was the second stage of a wider, multistage study. The first stage of the study explored clinician attitudes to and experiences of patient-led recording. 3 This study was conducted at two hospitals within the Gold Coast Health Service, Australia.
Health service consumers were invited to join the research team via the Gold Coast Health Service, Consumer Advisory Group. Only one health consumer responded to the expression of interest and was recruited to the research team. The health consumer was motivated to participate in the research project as the topic was of interest, and she was motivated to develop her research skills. The health consumer had some previous experience working on healthrelated projects as a consumer advisor and contributed to all aspects of this study (design, analysis and manuscript). The health consumer is a named author of this paper.

| Participants
Participants were patients or family members, friends or carers of patients who were admitted to one of the two hospitals at Gold Coast Health. To participate, consumers needed to be over 18 years old, speak a sufficient level of English to discuss this topic, and be interested in participating in this study. Participants were recruited through advertisements on the health service's social media sites and on digital screens around the hospital. Paper flyers were disseminated on ward receptions and in hospital waiting areas (including outpatient clinics). Also, invitation letters were handed out by a member of the research team to people in the hospital common areas and to patients admitted on the wards. If prospective participants were interested in learning more about the project, they were provided with a participant information and consent form. This advised them of who was conducting the study, the aims of the study, what the study would involve, confidentiality, and their options to withdraw. All participants who expressed interest in the study were eligible to participate. Of the participants who expressed interest in the study, one declined to be involved. Participants were advised there would be no negative consequences as a result of participating or withdrawing from the study. Participants provided written and verbal consent. Participants were also invited to write their gender and age on the participant information and consent form.

| Interviews
Twenty participants were recruited for the study. Twenty participants were selected to allow for novel and diverse data regarding the phenomenon. The group was also small enough so that the topic could be explored deeply. 25 Semistructured interviews of approximately 45 min were conducted with each participant. Semistructured interviews were selected as they allowed participants the opportunity to have some control of the dialogue, whilst ensuring that the data retrieved was relevant to the research questions. 26 Participants were offered interviews in person at the hospital or via video conference. For participants who chose to be interviewed in person, they were offered a private meeting room in the hospital. Participants were not paid for the interview; however, the cost of parking at the hospital was offered.
The team developed a semistructured interview guide with questions and prompts (see Supporting Information). The guide was internally piloted before being used with participants. A health consumer representative was also on the research team and was able to provide a consumer perspective when developing the interview guide. Interviews were conducted by a member of the research team (a female, clinical social worker) who was experienced in qualitative research and interview techniques. Interviews were digitally audio recorded and transcribed (intelligent verbatim). The interviewer completed a reflective journal to enhance the quality and integrity of this study. 27 Participants were given the option to review the transcripts for accuracy before analysis. There were no major changes made by participants who chose to review their transcripts.

| Data analysis
Interview transcripts were uploaded to NVivo to support the analysis process. Inductive thematic analysis was used, applying Braun and Clarke's 28 six-phase process. This methodology was selected as it allows for both a reflection and deconstruction of participant realities. 28 Two researchers separately orientated themselves with the data and identified codes based on patterned or significant responses, ensuring all relevant data were represented. Next, they collated these codes into potential themes. Then, the same two researchers collaborated to further refine themes, reconciling discrepancies and defining and naming themes. Quotes were selected to represent key themes. Finally, a report was generated and sent to the rest of the research team for final analysis. 28 (4) consumers hold expectations regarding their rights to record and the role of the hospital in facilitating recordings (Table 1). Most participants felt obtaining clinician consent before recording was important. 'It needs to be consensual on both parties … So it needs to be asked before done' (P1). All the participants who had previously recorded, advised that they had done so with the consent of the clinician. However, consent was understood differently by different participants. Some participants had verbally asked for consent from the clinician before initiating the recording. 'They were fine with it. But they were just like, as long as you don't get our complete face in the video, that's fine' (P3). For others, they believed consent was obtained, despite no formal discussion occurring. 'Well, they could see we were doing it, so we didn't actually ask permission … They seemed more than happy and understanding' (P5).

| The importance of consent
Participants were motivated to obtain consent to meet their understanding of the legal and policy requirements, or because they

| Uninformed and misinformed regarding policy and legislation
Participants were uncertain of the legality or hospital policy as it relates to the consent process when recording. Multiple participants held false views about the legislation and policy of recording in hospitals. Some falsely believed that recording a clinical encounter was either illegal or not permitted under the hospital policy. They reported that this had prevented them from initiating a recording.
'That's probably one of the other reasons that I would never record anything because I'm not actually aware of any of these practices that may happen in a hospital' (P6).
Many participants incorrectly thought it was illegal to make a recording without the clinician's consent. Some participants had been falsely informed by hospital staff that recording was not allowed or had misconstrued signs asking consumers not to record in public areas. A few participants understood their rights to record although were uncertain about the hospital policy. One participant felt that whilst recordings were legal, they were discouraged by the health service.
I believe I'm allowed as we're in a public health system, and I believe that being a member of that public health system they can't really say yes or no.

| DISCUSSION
This study sought to understand health service consumer perspec- There were some findings from our study which are cause for concern for clinicians and health services. As previously reported in the literature, our study found some participants would consider covertly recording in the future, due to poor experiences of the service and the need to obtain evidence to support their claim. 7

| Limitations and strengths
The findings of any study should be considered alongside its' ontological assumptions, strengths and limitations. This is a small qualitative study within a constructionist paradigm, which rejects the notion of objective reality. In accordance with the ontological perspective and research design, generalisable data were not sought.
Instead, the study aimed to illuminate constructed realities, which was achieved. However, there were several weaknesses which may affect the quality and trustworthiness of these findings. Bevan. All authors gave approval for the final version of the manuscript.

ACKNOWLEDGEMENT
We acknowledge and pay respects to the people of the Yugambeh language region of the Gold Coast and all their descendents both past and present. We also acknowledge the many Aboriginal people from other regions, as well as the Torres Strait and South Sea Islander people who now live in the local area and have made an important contribution to the community. We wish to thank the health consumers who shared their experiences with us, and Joanne Hilder, who provided support thoughout this project.