The Clinical User-experience Evaluation (CUE) – a novel method to understand patient's experience in a clinical trial of telemedicine

Research Objective: The use of technology-enabled interventions such as telemedicine to monitor patients from home is on the increase with chronic diseases. Telemedicine technologies are often designed ad-hoc by IT developers but how patients interact and feel about using these technologies in the rollout phase is crucial because the effectiveness of a telemedicine treatment also depends on the interaction pattern between the technology and its users (patients). While clinical trials focus on assessing the effectiveness of telemedicine other study designs are needed to investigate patients' experiences with the technologies. We developed a novel qualitative methodology - the Clinical User-Experience Evaluation (CUE) - to complement a clinical trial, using evaluation methods from Human-Computer Interaction (HCI) discipline. The CUE was implemented within a telemedicine clinical trial of Type 2 Diabetes (T2D) in Townsville region in Queensland in Australia, conducted by the TMML (Townsville-Mackay Medicare Locals). The telemedicine trial consisted of a tablet equipped with a built-in app, a glucometer and a sphygmomanometer. Study Design: We developed the CUE as a three-stage method. Stage 1 was a contextual inquiry that was performed in-situ at a patient's home. Patients used the tablet with the think-aloud method during this stage, during regularly scheduled times for using the technology. Stage 2 of CUE was a semi-structured qualitative inquiry to understand patients' experience and expectations including questions that arose during stage 1. Stage 3 was an online survey to verify some of our observations from the previous stages. Population Studied: Nine T2D patients (four females, five males) volunteered to participate in the CUE. They were part of the 210 participants of TMML's telemedicine clinical trial. Principal Findings: Stage 1 found that the technology did not suffice all of the needs of patients; they additionally used pen and paper. Stage 2 found patients' emotions, perceived behavior change of using the technology, reasons to use or not use the technology in future. Stage 3 tested what patients thought about seven of our observations about them. A few important ones were that - patients were divided in their opinion about –contacting nurses about technology related problems, about changing the location of the technology in their homes and that they were informed about expressing their thoughts about the technology design even though the clinical trial was about their medical improvement. However, all patients agreed that talking with a HCI researcher was additionally valuable for them. Interviews with two nurses validated that CUE acquired additional knowledge than those from the trial. Conclusions: Evaluation of telemedicine technologies can benefit through evaluation methods like CUE in addition to clinical trials. Implications for Policy or Practice: Some clinical trials are conducting a patient satisfaction survey only in the end and some additionally conduct qualitative studies. However, these are not done from a HCI perspective. The CUE uses HCI evaluation in a clinical trial understand the patients throughout the trial to find how patients feel and what matters to patients in a telemedicine technology and these findings provide guidance towards the modification of the technology or new technologies of telemedicine

Persuasion for In-home Technology Intervened Healthcare of Chronic Disease: Case of Diabetes Type 2

Abstract. Currently the world is going through a demographic shift that projects the proportion of ageing population will be more than double in the next four decades. This has serious consequences for our current healthcare systems for the ageing population that are prone to chronic diseases. One possible solution is to provide in-home assisted healthcare through technology intervened approaches. This will also create a change of roles, with the patient having more responsibility for their own well-being. However, through investigations of clinical trials of in-home technology intervened healthcare this paper identifies problems of technology use among patients. This paper argues that persuasive technology can help to motivate patients and support quality and cost-effective in-home healthcare. Focusing on diabetes type 2 as a representative of chronic disease, this paper describes background research and explores the possibility of deploying persuasive technology to support in-home technology intervened healthcare.

Clinical user-experience evaluation of type 2 diabetes patients using an in-home monitoring device: complementing a telemedicine clinical trial with HCI evaluation

A worldwide demographic shift is in progress. The percentage of the population that is ageing (those over the age of 64 years) is projected to more than double in the next four decades. People aged over 64 have a higher burden of disease, so the demand for medical care will increase. Unfortunately, the present healthcare models will be inadequate to handle the demands of the ageing population. One proposed remedy is to provide in-home assisted healthcare with technology-intervened approaches. Telemedicine, telehealth and e-health are part of current technological approaches that provide clinical treatment through a technology intervention. These technology interventions are evaluated through clinical trials, which are common procedures in evidence based medical science. Clinical trials are targeted to measure only improvements in medical conditions and the treatment's cost effectiveness. They do not investigate patients' experiences with these technologies. However, the effectiveness of a technology also depends on the interaction pattern between the technology and its users, especially the patients. The discipline of Human-Computer Interaction (HCI) provides various user-centred evaluation methods to assess user interaction and satisfaction with a technology. As a component of this qualitative research study, I developed a novel research methodology - the Clinical User-Experience Evaluation (CUE). The CUE is a HCI user-evaluation technique that complements a wider medical clinical trial. This clinical trial investigated medical improvements and cost effectiveness of telemedicine in-home monitoring technology for type 2 diabetes patients in the Townsville region in Australia. The clinical trial was governed by the Townsville- Mackay Medicare Locals (TMML). The CUE investigated how patients interacted with in-home monitoring technology that was being used as part of TMML's clinical trial. The CUE consisted of three stages: 1) a contextual inquiry, 2) a semi-structured interview and 3) an anonymous survey. I defined the precise stages of CUE to separate it from the activities of the clinical trial, which were conducted by clinical researchers/nurses. The CUE uses an ethnographic approach. I carried out the CUE in the field with nine type 2 diabetes patients. In addition, I interviewed two nurses to complement the patients' interviews. Stage 1 of CUE was a contextual inquiry that was performed in-situ at a patient's home. Patients used the technology with the think-aloud method during this stage, during regularly scheduled times for using the technology. Stage 2 of CUE was a semi-structured qualitative inquiry to understand patients' experience and expectations. In addition, questions that arose during stage 1 and any topic mentioned by the patients were explored. The interview took place directly after stage 1, while perceptions were still fresh in the mind of the patients. Stage 3 was a semi-anonymous survey to encourage patients' candor. I observed certain patterns of behaviour among the patients in this clinical trial, during the first two stages. I developed a semi-anonymous survey to verify these observations by obtaining patients' opinions. This survey in stage 3 was conducted online eight months after stage 2. Prior to the implementation of the CUE, I conducted a meta-synthesis of past clinical trials of type 2 diabetes. The meta-synthesis demonstrated that past telemedicine technologies had positive behavioural outcomes on patients. Therefore, implementation of CUE held promises of new findings in a traditional clinical trial. Data from CUE was analysed and presented as the following topics in this thesis. 1. Patients' experience of using the device; 2. A User-Centred Design for type 2 diabetes patients; 3. Domestication of the technology; and 4. Hidden Hypotheses by patients and nurses-- this part presents my observations about the assumptions that the patients made about the trial and the assumptions that the nurses made about the patients and the technology. I call these assumptions "hidden hypotheses". Key analytical findings from the CUE depicted that patients value the benefits of in-home monitoring but the current device did not possess all functionalities that type 2 diabetes patients require. The User-Centred Design (UCD) methodologically confirmed the functionalities the in-home monitoring device should contain, to meet the expectations of type 2 diabetes patients. Analysis on the domestication of the device showed that patients did not change the location of the device after the initial placement. The hidden hypotheses disclosed some causes of why patient feedback about technology may remain hidden in a medical clinical trial

Integrating persuasive technology to telemedical applications for type 2 diabetes

Type 2 Diabetes (T2D) patients need constant monitoring of food, exercise and insulin level. Telemedical systems aid the patients in monitoring and sending their regular blood glucose to nurses and in receiving suggestions on food, exercise and insulin dosage, especially on food choices. This paper presents a qualitative inquiry aimed at investigating the possibility of integrating Persuasive Technology (PT) into existing telemedical system for T2D to promote desirable dietary and physical activity among T2D patients and how T2D patients perceive the role of such PTs in comparison to a human persuader. The findings show that T2D patients prefered to receive dietary recommendation and suggestions or restrictions from a PT. The T2D patients prefer to be told what they can or cannot eat by a PT than hearing it from a human. Thus, PTs hold significant promise of complementing existing telemedical applications to achieve desirable health outcome for T2D. However, since the motivational needs of T2D patients may differ from those of non-diabetic individuals [12], there is a need to understand them and tailor the PT to reflect the needs and beliefs of the T2D patients

Design implications from the preliminary results of a telemedicine patient-technology interaction study

The global demographic shift of the proportion of ageing population is projected to be more than double in the next four decades. Consequently, healthcare systems will face strong demands from the increase in patients because the ageing population is prone to chronic diseases. A possible solution for some chronic diseases is to provide healthcare through in-home monitoring technology. However, current design considerations have a greater focus on how to deliver healthcare through these technologies than how the patients' experience the technologies. Hence, these technologies are often a digital version of the existing healthcare delivery system. This paper presents preliminary findings of a patient-technology study from the Human-Computer Interaction (HCI) perspective. A HCI empirical evaluation was conducted of patients' use of technology in a telemedicine clinical trial of type 2 diabetes. This paper describes the Clinical User-Experience Evaluation (CUE) method that was designed for this trial to explore medical monitoring in the digital age. Preliminary findings about design of future patient-centric in-home monitoring technology for type 2 diabetes are presented

A meta-synthesis of behavioral outcomes from telemedicine clinical trials for type 2 diabetes and the clinical user-experience evaluation (CUE)

A worldwide demographic shift is in progress and the aged population proportion is projected to more than double across the next four decades. Our current healthcare models may not be adequate to handle this shift in demography, which may have serious consequences for the ageing population who are more prone to chronic diseases. One proposed remediation is to provide in-home assisted healthcare with technology-intervened approaches. Telemedicine, telehealth, e-health are paradigms found in scientific literature that provide clinical treatment through a technology intervention. In evidence-based medical science, these technology interventions are evaluated through clinical trials, which are targeted to measure improvements in medical conditions and the treatment's cost effectiveness. However, effectiveness of a technology also depends on the interaction pattern between the technology and its' users, especially the patients. This paper presents (1) a meta-synthesis of clinical trials for technology-intervened treatments of type 2 diabetes and (2) the Clinical User-Experience Evaluation (CUE). CUE is a recommendation for future telemedicine clinical trials that focuses on the patient as the user from Human-Computer Interaction (HCI) perspective and was developed as part of this research. The clinical trials reviewed were interpreted from a technology perspective and the non-medical or non-biological improvements of the users (patients) rather than the medical outcome. Results show that technology-intervened treatments provide positive behavior changes among patients and are potentially highly beneficial for chronic illness management such as type 2 diabetes. The results from the CUE method show how it complements clinical trials to capture patients' interaction with a technology

But it doesn't go with the décor: domesticating a telemedicine diabetes intervention in the home

Type 2 Diabetes (T2D) is a chronic disease that requires day-to-day management. Telemedicine is one way of providing support to patients, to manage and receive care from home. Medical researchers use clinical trials to evaluate telemedicine technologies by comparing medical improvements of the patients. However, the patients' interactions and experiences with the technology are important because unpleasant experiences may result in non-adherence to a medical program. HCI experts have contributed in user-centred evaluations for decades. This research complements a telemedicine clinical trial with human-centred evaluation to understand patients during the post- rollout phase. Findings present patients' placement of telemedicine device in their homes, patients' feelings of using the device and their family involvement, and our experiences of conducting a HCI research with medical researchers in a clinical trial. We conclude that though the telemedicine device is seen as life-saving, patients treat it just as a regular device. We conclude that telemedicine evaluations such as clinical trials can benefit from evaluation methods in HCI

Complementing a clinical trial with human-computer interaction: Patients' user experience with telehealth

Background: The use of telehealth to monitor patients from home is on the rise. Telehealth technology is evaluated in a clinical trial with measures of health outcomes and cost-effectiveness. However, what happens between a technology and the patients is not investigated during a clinical trial—the telehealth technology remains as a “black box.” Meanwhile, three decades of research in the discipline of human-computer interaction (HCI) presents design, implementation, and evaluation of technologies with a primary emphasis on users. HCI research has exposed the importance of user experience (UX) as an essential part of technology development and evaluation. Objective: This research investigates the UX of patients with type 2 diabetes mellitus (T2D) with a telehealth in-home monitoring device to manage T2D from home. We investigate how the UX during a clinical trial can be researched and what a clinical trial can learn from HCI research. Methods: We adopted an ethnographic philosophy and conducted a contextual inquiry due to time limitations followed by semistructured interviews of 9 T2D patients. We defined the method as Clinical User-experience Evaluation (CUE). The patients were enrolled in a telehealth clinical trial of T2D; however, this research was an independent study conducted by information technologists and health researchers for a user-centered evaluation of telehealth. Results: Key analytical findings were that patients valued the benefits of in-home monitoring, but the current device did not possess all functionalities that patients wanted. The results include patients’ experiences and emotions while using the device, patients’ perceived benefits of the device, and how patients domesticated the device. Further analysis showed the influence of the device on patients’ awareness, family involvement, and design implications for telehealth for T2D. Conclusions: HCI could complement telehealth clinical trials and uncover knowledge about T2D patients’ UX and future design implications. Through HCI we can look into the “black box” phenomenon of clinical trials and create patient-centered telehealth solutions.</p