Informatics for Health & Social Care September 2008; 33(3): 158169

User-centered methods for designing patient-centric self-help tools

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EIRIK ARSAND1 & GEORGE DEMIRIS2

Norwegian Centre for Telemedicine, University Hospital of North Norway, and Department of Computer Science, University of Troms, P.O. Box 35, N-9038 Troms, Norway, and 2Biomedical and Health Informatics, School of Medicine University of Washington, WA, USA
1

Abstract Involving end users in the design process can be challenging and in many cases fails to become a priority for system developers. This is also the case with numerous applications in the health care domain. This article focuses on the design process for applications intended for direct use by the patients themselves, often referred to as self-help tools. A framework for the user involvement in the design process is presented. This framework is inspired both from existing methods and standards within the eld of human computer interaction, as well as documented experiences from relevant e-health projects. An analysis of three case studies highlights the importance of patient involvement in the design process and informs guidelines for patient-centric system design.

Keywords: Chronic diseases, e-health, participatory design, user-centered methods

1. Introduction E-health is an emerging concept that may generally be dened as the use of advanced telecommunication technologies to support health care delivery and education [1]. Thus, e-health refers to a fundamental redesign of health care processes based on the use and integration of electronic communication at all levels. Such a redesign aims to empower patients, enabling a transition from a passive role where the patient is the recipient of care services to an active role. An active role means that the patient is informed, has choices, access to information, and is actively involved in the decision-making process. Within the e-health research area, system design typically involves workshops and prototyping followed by evaluations using questionnaires, interviews, focus groups and eld studies. End users are to a limited extent involved in the system design process. This is often the case in spite of the notion that involving the end users early in the process holds the potential of an overall improved outcome. Furthermore, both design and evaluation of health related system prototypes or services are often performed without guidance by humancomputer interaction (HCI) theories and methods. Thus, using more adequate design and evaluation methods can maximize the potential of e-health applications.
Correspondence: E. Arsand, Department of Computer Science, University Hospital of North Norway, University of Troms, PO Box 35, Troms N-9038, Norway. E-mail: eirik.arsand@telemed.no ISSN 1753-8157 print/ISSN 1753-8165 online 2008 Informa UK Ltd. DOI: 10.1080/17538150802457562

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The organizational structure within the health care sector is considered to be strongly hierarchic, where medical doctors in particular have great power. In traditional information technology projects in health care, the end user has been dened as health care personnel. Lately, patients have been recognized as playing a more important role in their own health, with reference to the empowerment concept, the aging population, and the scarcity of resources for dealing with health problems among this group. Anticipation of this situation has led to many products directed solely at patients, e.g. devices for measuring and managing blood pressure, blood glucose, respiratory peak ow, body temperature, heartbeat, etc. The technological advances have made it possible and affordable to develop a vast number of applications intended for direct use by patients or potential patients also called e-health consumers. This trend should thus be followed by a shift in the methods applied in the design processes. Based on three case studies, we propose a framework for including patients early in design processes of patient-centric systems. Most of the referred work focuses on self-help tools for people with chronic diseases, but the framework hopefully holds the potential for being applied to a wider range of applications. In this context, we review both HCI design and evaluation methods and theories that may become operational tools when applying the framework. 2. Background Health-care-related HCI research projects seem to focus mostly on clinical staff and to a lesser degree on patients. An obvious reason for this is that there are far fewer advocates representing the patientsusually only patient organizations. For most workersin our context, clinical staffthe incentives for using a new product or new service can be imposed by administration or driven by anticipated productivity increases, whereas patients with lifestyle-related diseases such as asthma or diabetes, face many burdens in their daily lives and may be reluctant to introduce a new system. Figure 1 presents an illustration of parameters that typically affect the patients life. Perceived self-efcacy is dened as peoples beliefs about their capabilities to produce designated levels of performance that exercise inuence over events that affect their lives [2]. Related to patients, we interpret perceived self-efcacy as a persons belief in being in control over their disease and how well (s)he manages the disease. The parameters that affect the sense of self-efcacy for patients with chronic conditions

Figure 1. Internal and external attributes that affect self-efcacy for patients with chronic conditions.

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include both external and internal attributes. External attributes include the social network of the patient, the health services that are available, as well as nancial and IT resources. Such external factors can enhance or impede the effectiveness of a self-help tool. Similarly, internal factors, such as the patients health status, motivation, level of disease knowledge, potential functional limitations are also affecting ones sense of self-efcacy and ultimately, the potential of self-help tools. 2.1. Patient self-help tools
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Patient self-help tools should both have a potential for increasing the persons self-efcacy and improving their health status and management of their condition. Many of the patient-centric health tools on the market do not fully utilize the potential that technology provides, for designing a truly user-friendly end product. A specic example of such a tool is blood glucose monitors. Even though short-range wireless communication standards are relative mature, none of the industry players have so far made the most of such standards to simplify transfer and use of blood glucose data. Some third-party players have approached this issue, but we have not found any large actors that have really taken the users needs into consideration to develop sustainable self-help tools. Another example is providing easier access to diseasespecic information to people who are not accustomed to using PCs and the Internet. Tools to ensure that internal and external parameters affecting self-efcacy are taken into consideration during the design phase include focus groups, interviews and workshops with the end users. 2.2. HCI and patient considerations Sainfort et al. [3] stress four specic qualities that human-computer interfaces must possess to be optimal both for the medical personnel and the patient, namely they need to be multimodal, personalized, context aware and adaptive. For most of the users requiring self-help tools for chronic diseases, i.e. mostly older adults, more basic factors need to be taken into consideration as well. These include age-related changes in functional abilities such as sensor-perceptual processes, motor abilities, response speed and cognitive processes. In Czaja and Lees review [4] of designing computer systems for older adults, they conclude that issues such as screen design, input devices, and interface style are largely unexplored. They also stress the importance of knowing why the technology may be difcult to use, how to design for easier and more effective use, and how to teach users to take advantage of the available technologies. Furthermore, based on the recommendation from Wilson [5], patient-centric studies should denitely use triangulation, i.e. using not one but several methods, measures, and approaches, in the process of designing good patient-centric tools. 2.3. Reecting on case studies The following three projects include case studies of patient-centric applications used to highlight the importance of user involvement in the design of e-health tools. 2.3.1. Case study 1Automatic transfer of blood glucose data from children with Type 1 diabetes. The objective of this study was to determine how both children with Type 1 diabetes and their parents perceived a system that automatically transmits measured blood glucose data as text messages (SMS) to the parents mobile phone.

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The study was performed together with the Department of Pediatrics at the University Hospital of North-Norway, involving 15 children (aged 9 to 15 years) with Type 1 diabetes, and their parents. Using a prototype adapter connected to their blood glucose monitor, the data were sent to the parents mobile phone as SMS immediately after the children had measured their glucose value. The methods used were questionnaires pre- and postintervention, prototyping and testing in several iterations and interviews with the parents after the intervention. Findings from the 4-month intervention were that the system use was easily integrated into everyday life, and parents valued the sense of reassurance offered by the system. For children who measured their glucose level regularly, use appeared to reduce parental intrusions. For those who measured irregularly, however, parental reminders appeared to increase. Findings are reported in greater detail elsewhere [6]. Methodologically, the design process was user-centric, as a member of the design team had the same disease as the target group, and one of the 15 children was involved as a test user. Both the design team member and the test user tested the pre-prototype extensively before the main 4-month study. Despite this effort, errors in the prototype made it challenging to interpret the usability feedback from the users. Questionnaires were designed especially for this study, one set for the children and another set for their parents, both before and after the intervention. Thus, this approach provided us insight to which degree both the children and the parents perceived the system as positive (80% and 93% respectively). A semi-structured guide for the parent interviews was designed. After interviewing 10 parents, no new information emerged, i.e. we reached data saturation, and further interviews were deemed unnecessary. We did not use any predened code scheme, but coded the data with respect to the patterns emerging from the data as is the case in general with feasibility studies, e.g. the study by Mamykina et al. [7]. The users were also encouraged to ll out a paper-based logging scheme (a designated page in the user-manual). However, none of the users (n 15) did return this page together with the questionnaires as requested. 2.3.2. Case study 2Self-help through a mobile ICT tool. This studys objective was to generate knowledge about how a mobile tool can be designed for supporting lifestyle changes among people with Type 2 diabetes. A self-help tool consisting of a Smartphone (programmable mobile phone) as the user interface is connected to the wireless system for blood glucose data transfer (as described in case study 1), to a system for wireless transfer of physical activity and an easy interface for registration of nutrition habits. The study was performed without involving a health care facility, and the informants were recruited through the national diabetes association. Fifteen people between 40 and 70 years old, who had Type 2 diabetes, were recruited. Most of these informants participated on all of the ve 2-h meetings over a 4-month period. For comparison and quality assurance reasons, we also used a reference group of 20 individuals without diabetes, recruited at an eHealth conference. The methods used were focus groups, paper prototyping and sketching, prototyping, questionnaires, and also giving the informants small amounts of homework between the focus-group meetings. Findings from the user-intervention are related to which functionalities the informants would like to see in the mobile self-help tool, how they perceived the rst prototype and ways of using a nal tool in future. Both groups were positive to the concept, and the user-group was more positive than the reference group. There was a large variation in user preferences for the design of the tool, something that strengthens the argument for user-tailored, and preferably self-adaptable design. The use of Smartphones as patient terminals for self-help

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seems to be accepted by the users. The users appreciated text-based visual feedback as much as graphical feedback layouts. More detailed ndings are reported elsewhere [8]. Methodologically, this study combined many various methods in collaboration with the users. The users in the focus-groups were really creative in the last of the ve 2-hours meetings. This advocates for arranging extensive user-interactions in similar projects where one expects patients to contribute with functional and perhaps innovative input. The idea of giving the patients homework between the focus-group meetings worked very well and approx. 80% of the users did put effort into this. The research group followed up on the homework at the subsequent meeting, thus showing that the patients input was highly wanted. This may have been the reason that they were highly motivated to put efforts into their next homework as well. Two-three staff members participated at each meeting, involving between 58 patients. The patients did not get any incentives other than refreshments at the meetings. Both the patient and the reference group scored highly on their beliefs in the concept, but the patient groups high motivation has to be taken into account when designing for other patient groups. The informants were all members of a diabetes association, and in addition volunteered to study participation (approx. 10% volunteer rate). Thus, their extraordinary high interest for the system has to be taken into account if applying the results on less motivated users. 2.3.3. Case study 3Smart home features for older adults. The objective of this study was to assess older adults preferences and perceptions of smart home sensors that were installed in their residences. Furthermore, the goal was to include older adults in a participatory evaluation of these home-based technologies. Smart homes are broadly dened as residential settings with ubiquitous computing features that allow the monitoring of residents and enhance their safety and well-being. The study setting was an independent retirement community in Columbia, Missouri, USA, designed based on the principle of Aging in Place. Aging in Place is a model of care that supports older adults to remain independent for as long as possible in the residence of their choice, rather than being transferred to different facilities every time their health care needs change. Within this facility, residents could consent to allow the installation of smart home features (i.e. motion sensors, bed sensor, gait monitor and stove sensor) in their apartment. The methods used were focus groups and interviews with older adults before and after the system installation as well as observations in their apartment to determine whether the technology interferes with activities of daily living or to what extent the system is nonobtrusive. Findings indicated that overall older adults appreciated the sense of safety and security provided by non-obtrusive monitoring technologies. They felt that the system did not interfere with daily activities. Specic concerns were raised about the size or the texture of bed sensors and sensor mats. Privacy was not raised as a concern as subjects felt that perceived need for monitoring alleviates in many cases privacy concerns. Findings are reported in detail elsewhere [9]. From a methodological point of view, our study conrms the challenges of conducting focus groups with older adults, identied by Barrett and Kirk [10]. These include the fact that older people show a lowered ability to focus attention over longer periods of time, or to suppress irrelevant information. Our protocol was designed so as not to overload the working memory of older adults during the sessions since these require simultaneous maintenance and manipulation of spoken information. End users valued the participatory approach and felt a sense of ownership of the project design and implementation as their input was solicited on an ongoing basis. This case study emphasizes the importance of user proling and a detailed

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analysis of external and internal attributes that may affect the context and purpose of use of self-help tools. Interfaces to display sensor data had to be designed to address potential functional and/or cognitive limitations of the end users. The actual system design and the evaluation methodology targeted the specic user, namely older adults in a long term care facility. As a result, the nal set of sensors and interfaces were most appropriate for this target audience, but may not be desirable for other populations. The users involved in the design process were representatives of the actual target audience, namely residents of the facility who decided to have the system installed in their apartment. Finally, this case study highlighted the value of an iterative process where design and implementation are evolving based on user feedback.
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3. Methods and standards for user-centered design Both HCI methods and related standards are seldom used in e-health projects and studies. A reason for this is the fact that e-health is a multidisciplinary eld, involving traditions from disciplines such as social science, medicine, computer science and engineering, leaving less room for another multidisciplinary eld as HCI. In the following we provide an overview of relevant methods and some standards that are to be included in the suggested framework. 3.1. Standards for user-centered design 3.1.1. ISO standards. The ISO Standard 13407 Human-centered design processes for interactive systems is intended to help those responsible for managing hardware and software design processes to identify and plan effective and timely human-centered design activities [11]. Patient-centric self-help tools are often composites of both hardware and software, thus this standards scope is very relevant. The standard basically addresses planning, management, and an overview of human-centered design activities, not detailed coverage of the methods and techniques required for human-centered design. It focuses on using multidisciplinary teams and on an iterative design process, where feedback from users is a critical source of information. Each iteration basically includes a specication of the context of use, a specication of the requirements, production of design solutions, and an evaluation of the designs against the requirements. The illustration of the preferred human-centered design process from the ISO standard 13407 is the basis for our proposed framework described later. 3.1.2. ETSI standards. There are several recommendations and relevant documents from the European Telecommunications Standards Institute (ETSI) as well, which may be useful when designing patient-centric tools. The most relevant one for designing for patients is the ETSI EG 201 472Human Factors (HF); Usability evaluation for the design of telecommunication systems, services and terminals [12]. This document describes pros and cons for several methods such as experiments, eld observation, heuristic evaluation, focus groups, input logging, surveys, questionnaires, interviews, performance measures, thinking aloud and audio-video recording. Few of the ETSI standards seem to be used in the design of e-health applications in spite of their potential as described below. 3.2. Methods for user-centered design 3.2.1. Workshops and focus groups. Arranging workshop is a typical pre-study method. Due to the fact that involving patients in medical research needs approval from a regional ethical committee due to the Declaration of Helsinki [13], and this approval typically takes several

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months to receive, patients tend to be absent on early workshops. In the cases where decisions are taken based on such workshop that have no patient involvement, this becomes problematic for the subsequent design process. If a workshop needs to be held before an approval from the regional ethical committee, inclusion of a patient representative or a patient organization representative will obviously be better than no patient representative at all. Arranging one or more focus groups with approximate 57 patients in each, has for our studies been a good way for acquiring information about patients need for a tool or system, their situation and prerequisites, e.g. as used in case study 2. Using less than ve patients tends to give to little discussion between the participants and using more than seven patients tends to be difcult to administer. Depending on the patients abilities and disease, 2 h seems to be close to the maximum length such sessions may last. 3.2.2. Paper prototyping and sketching. Involving patients in the design process is often demanding, where the time constraint often limits extensive and detailed feedback. Arranging focus groups or interviews with patients provides the designers with typically 2-h sessions. Rapid ways of receiving feedback are therefore required, especially in the initial design phase. Making paper prototypes beforehand or even during the interaction with the patients, and asking the patients to sketch their preferred tool or system are two recommended methods. The project NutriStat [14] combined the paper prototyping and the think aloud methods. Their prototypes consisted of a series of prefabricated cut-outs that represented various states of a mobile phone application. Lim et al. [15] state that for their low-delity prototypes the major limitation was the abstractness and unclearness, but they still nd it a valuable approach to evaluate usability at an early stage. Tohidi et al. [16] developed a variant of paper prototyping called the sketching exercise, which involves the user in sketching the ideal system design. They found that enabling users to sketch their ideas facilitated reection, and provided a rich medium for discovery and communication of design ideas. Reviewing the user sketches alone could have uncovered much of the essential ndings of the more commonly used usability test methods. These are very interesting ndings, and even more impressive is their conclusion that sketching exercise did so at a fraction of the time and money required to facilitate, record, and analyze the think aloud protocol, interview and questionnaire data [16]. 3.2.3. Thinking aloud. According to Dumas [17], the thinking-aloud method used in usability testing in contrast to cognitive psychology, focuses on reporting not only thoughts, but also expectations, feelings and other things that the test subjects want to report. In the design phase of PmEB, an application for mobile phones that allows users to monitor their caloric balance as a part of weight management [18], the users were encouraged to think aloud through the process. The project group noted the user interface issues that caused confusion, frustration or other difculties. This process was followed by interviews and a discussion session. Depending on the complexity of the patients disease, the users verbalization may be complex when mixing disease-specic comments, expectations of the system, actual system performance, etc. This again may result in a large volume of qualitative data that may be complex to analyze. Thus, the design team must therefore make realistic plans for this potential source to invest additional resources. 3.2.4. Scenarios and storytelling. Scenarios and storytelling may be user-centered in the sense that the descriptions have to be based on sound disease and patient knowledge, preferably by involving patients themselves in the writing process. The main advantage for use of scenarios and storytelling in e-health studies is that this method provides a solid way of explaining both

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the health problems and the technical solutions. By using a narrative explanation style, one may achieve greater success in explaining how a technical solution works for the patients and how the patients disease is experienced, for the care givers. The SuperAssist project [19] used scenario-based design as the main technique to develop research ideas in the project. They also used user scenarios in publishing their work. Their scenario is typical for e-health application research, namely describing the history of the patient prior to the main problem, the introduction of the main problem followed by an introduction of the e-health application, and nally some examples on how this application eases the patients everyday life. The method personas may be a valuable basis for communication and common understandings within the project group, especially in large studies where complex patient systems are to be designed. 3.2.5. Interviews and eld studies. Interviews give the users the possibility to express their view on both their situation and on a design. There are generally three types of interviews; structured, semi-structured and open interviews. In studies where the relatives of the patients are also involved in the self-help system, different types of interviews may be considered for the different informants. In cases where one needs a deeper understanding of the patients benet of the system, interviews are often necessary. An alternative or supplement to interviews is eld study, which is an observational method that provides a more objective way of gaining insight into the users situation or use of a system. Boyd-Graber et al. [20] argue for and used a longitudinal eld study methodology lasting for 4 weeks in a study on designing for individuals with aphasia. The reason they give for using this method instead of lab studies is that assistive technologies previously tested in lab have received little or no adoption in the eld. 3.2.6. Questionnaires. Questionnaires are often used in e-health studies, though HCI-specic instruments are rarely used. A brief resume of some HCI questionnaires is given below, in order to increase the awareness of such instruments within e-health studies. For software evaluation a simple and promising questionnaire is the 10-question Software Usability Scale (SUS) [21]. In a study of four instruments that was performed by Tullis and Stetson [22], it was found that the simplest questionnaires, SUS, yielded some of the most reliable results across sample sizes. The same study showed that for assessment of websites, sample sizes of at least 1214 participants are needed to yield reasonably reliable results. Required sample size is a parameter that preferable should be checked early in the process of choosing questionnaires, since it is generally more difcult to recruit patients than other informants. There is an obvious advantage of being able to compare your own data with others researchers data when using a standard questionnaire such as the Software Usability Measurement Inventory (SUMI) evaluation questionnaire [23], the Questionnaire for User Interaction Satisfaction (QUIS) [24], the Computer System Usability Questionnaire (CSUQ) [25], and the checkbox scheme Microsofts Product Reaction Cards [22]. The conclusion from the case study described by Jokela et al. [26] is that most industrial development projects have specic constraints and limitations, so that an ideal use of usability methods is not generally feasible. They researched qualitative requirements for developing user interfaces for mobile phones, and strongly recommend the use of measurable usability requirements, but state that usability methods should be selected and tailored based on the specic context of the project. This suggestion is supported by many authors, e.g. [27], where the research team used a subset of the Behavior Risk Factor Surveillance System Survey Questionnaire.

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3.2.7. Logging and other observation methods. The Declaration of Helsinki [3] sets strict demands on the collection and storage of identiable human material or identiable data. Performing research on patients requires prior approval from regional ethical committees, where the routines for logging and storage of patient data are acknowledged. Video recorders, audio recorders, manual forms and automatically recorded logs are used for recording observations. As Dumas [17] argues, the goal is to record key events while they happen rather than having to take valuable time to watch videotapes later. Dumas refers to three ways of recording data more easily: using good data collection forms, using data logging software, and automatically capturing activities in log les. When patients are testing prototypes over a longer period in their home environments, it may be feasible for them to write a diary. However, it can be challenging to motivate the users to actually write down their experiences, concerns or impressions. The DELTA project described by Venturi and Bessis [28] did get ve out of 16 users to return their diaries at the end of their project. They promised two awards as an encouragement, to the two best diaries. Without any awards, the project described in case study 1, did not get any of the 15 participants to return their diaries. 4. Resultssuggested framework Based on the review of relevant methods and standards within human computer interaction, as well as documented experiences from relevant e-health projects and the presented case studies, we suggest a framework for patient-centric system design. The ISO 13407 standard Human-centred design processes for interactive systems includes a relevant model that describes the interdependence of human-centered design activities, and which is very relevant to the process of designing patient-centric self-help tools. Thus, by modifying and tailoring this model to the patient and e-health focus, we suggest an operational framework for achieving improved user involvement in the design process, see Figure 2. For involvement of patients in the design process, the rst step is to identify a need for a patient-centered system. This requires an understanding of the context of use and a specication of patient requirements. These requirements include internal and external attributes (highlighted in Figure 1) that allow system designers to conduct a detailed end user proling. The identied attributes (e.g. potential end user functional limitations, experience, attitudes and available resources) will drive the design decisions. Once design solutions have been produced, they

Figure 2. Inspired by the illustration for human-centered design in the standard ISO 13407, this gure relates to how one may involve patients in designing a self-help tool.

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need to be evaluated against the specied requirements. If a system prototype does not satisfy these requirements, the process of understanding the context of use and the end user needs to be re-initiated. Our focus is on patient-centric tools, but may involve data transfer or other functions related to the health care sector. In this case health care personnel need to be included in the design process as well. When interacting with some kind of health services, one must expect the system to address additional specications due to security, reliability and onlineconnectivity. Interacting with health care professionals about medication and clinical advice or recommendations places additional expectations for reliable and valid system performance. This framework proposes the involvement of patients in the design approach as well as additional stakeholders if necessary (such as health care providers, family members, informal caregivers or community members) based on the context and proposed system use. The iterative approach, while it may lead to a prolonged design phase, ensures that the system design satises the specied requirements driven by the patients needs and expectations. 4.1. Guidelines for patient-centric design We summarize the following recommendations for end-user involvement of e-health applications: . . Develop and test a prototype with real patients who have a need for the tools functionalities. Use of scenarios and storytelling are effective ways of explaining how a technical solution works for the patients, and for caregivers to gain an understanding of the patients experience, needs and expectations. Allocate sufcient time for several meetings to allow users to understand the possibilities that the technology provides and to let their own creative ideas bloom. The same is true when aiming for users to contribute with paper-prototypes, home-work, or other concrete inputs. Plan for extra iterations on the prototype design and testing with real users, which will ultimately improve the post-intervention data analysis process. Automate the logging of the use of the prototype. Getting the users to do the logging themselves requires rewards, if possible at all. Use post-intervention interviews when an in-depth understanding of the patient experiences is required. Consider using a reference group for comparison and quality assurance purposes. The challenge in this context is to explore ways to recruit such a group. (In many cases it is suitable to recruit conference participants or members of the social network of the design team.) Select user-centered HCI-methods that are most relevant for a given context and user group. Use the triangulation approach, in the process of designing good patient-centric tools.

. . . .

5. Conclusion Based on three case studies, a review of relevant methods and standards for user-centered design, a framework and guidelines for designing patient-centric self-help tools are presented. It is advocated that the focus on HCI methods and standards within e-health studies should be increased. Through the description of the case studies and the guidelines for

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patient-centric design, this paper suggested how HCI methods may be applied to studies where it is benecial for patients to be extensively involved in the system design. The pitfalls when designing for a special user group may be many and difcult to predict. This article aims to provide a roadmap for e-health researchers and designers to embark on, in a design process together with patients. Acknowledgments This work was supported in part by the Research Program for Telemedicine, Helse Nord RHF, Norway, the Center for Research Driven Innovation, Troms Telemedicine Laboratory (TTL), Norwegian Research Council Grant Nr. 174934, and the National Science Foundation (NSF) Grant NSF-ITR 0428420 (Skubic PI). References
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