Participatory design of a text message scheduling system to support ...

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Participatory design of a text message scheduling system to support young people with diabetes Annalu Waller, Victoria Franklin, Claudia Pagliari and Stephen Greene HEALTH INFORMATICS J 2006; 12; 304 DOI: 10.1177/1460458206070023 The online version of this article can be found at: http://jhi.sagepub.com/cgi/content/abstract/12/4/304

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Copyright © 2006 SAGE Publications (London, Thousand Oaks, CA and New Delhi) Vol 12(4): 307–321 [1460-4582(200603)12:4; 304–318; DOI: 10.1177/1460458206070023] www.sagepublications.com

Participatory design of a text message scheduling system to support young people with diabetes Annalu Waller, Victoria Franklin, Claudia Pagliari and Stephen Greene Effective self-management of diabetes requires considerable behavioural change and continuous support from health professionals, which can be expensive. Information technology has the potential to offer cost-effective patient support, but internet use mostly relies on the active seeking of information. Text messaging offers an ideal channel for delivering ‘push’ support and facilitating reciprocal communication between patient and health professional. This paper describes a participatory design methodology to develop a text message scheduling system for supporting young people with diabetes. The project illustrates how this familiar design approach can be used in a short-term project to deliver a successful medical application. Close working between clinician and software developer led to successive user-informed iterations as the clinician became more aware of the system’s potential and identified barriers. The result was a reliable, functional, acceptable and usable system that was effectively implemented in its intended setting. Keywords diabetes, diabetes self-management, text messaging, treatment scheduling

Background Diabetes self-management in adolescence Diabetes self-management involves a complicated regimen of daily insulin injections, selfmonitoring of blood glucose and careful attention to healthy eating and exercise [1]. This

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Waller et al. Text message scheduling for diabetes

is difficult for young people to sustain on a daily basis and poor adherence with diabetes care is a frequent problem [2]. The majority of children in Scotland [3] and Europe [4] have poor glycaemic control and this is associated with increased risk of complications associated with diabetes in later life, including retinopathy and nephropathy [5]. The Diabetes Control and Complications Trial (DCCT) demonstrated that intensifying insulin therapy (multiple daily injections or insulin pump) improves glycaemic control and reduces the risk of complications but only where it is used in conjunction with increased healthcare professional support (frequent clinic visits and weekly telephone contact) [5–7]. Current SIGN and NICE clinical guidelines therefore recommend that intensive insulin therapy (IIT) should always be accompanied by increased support [8, 9]. However, the level of professional contact used in the DCCT is expensive to deliver and therefore difficult to translate into routine clinical practice [10]. Developing cost-effective methods of providing patient-centred support for adolescents with diabetes, particularly those on IIT, is therefore essential to effectively implementing current clinical guidelines. Information technology offers one potential solution to this problem. Text messaging offers an ideal medium of delivering a behavioural intervention; it is an integral part of teenage culture [11] and therefore likely to engage a group that is classically difficult to reach. It uniquely also provides a means of delivering proactive support, where information is ‘pushed’ to the user rather than being actively sought. Importantly, it is inexpensive and therefore offers an efficient means of supporting patients in the context of limited health service resources.

User-centred design Although user-centred design methods are now influential, many software products continue to be developed with minimal interaction with end-users, leading to poor functionality and usability and hence low uptake. Indeed some estimates suggest that the failure rate of software development projects is as high as 60 per cent [12]. This has been echoed in the poor uptake of many medically based technological innovations [13, 14]. Within human–computer interaction (HCI), software designers have developed flexible lifecycle models which have a stronger user focus than those employed in general software engineering. HCI approaches involve users in frequent evaluation at every stage in the design process. User-centred lifecycles such as Harston and Hix’s star lifecycle [15], Preece et al.’s interaction design model [16] and the Cognetics LUCID framework [17] provide examples of processes which focus on iteration and usability evaluation. The star lifecycle approach [15] (see Figure 1) illustrates how evaluations by users and experts are not only intrinsic to each software development activity but also conducted between different activities. This approach reflects the flexibility observed in many HCI teams where designers do not follow a traditional sequential process, but instead treat the development of the definition of the problem (requirements gathering) and potential solutions (design) [18] as codependent processes which evolve and are refined with time. The star lifecycle encompasses traditional design tasks such as requirements specification, analysis (task analysis and functional analysis), design, and product implementation without the imposition of the traditional ordering of tasks. The model also emphasizes the interconnectedness of activities which, unlike in more formal models, have no fixed order, although evaluation is essential at every stage.

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Figure 1 The star lifecycle (adapted from Harston and Hix [15])

The iterative nature of user-centred design (UCD) means that all stages of the process can be revisited. This ensures that feedback from users during evaluation (e.g. suggestions for modifications to the requirements and the design of the product) is incorporated prior to the implementation and testing of the final product. This in turn leads to a more efficient development process which results in a product that is less likely to require major redesign after the final evaluation process is completed [19]. It also results in a product which can be promoted and marketed as an example of UCD. The interaction design model [16] which lends itself to GUI interface design, and the LUCID process [17] which supports web-based interface design, reflect similar characteristics to the star lifecycle [15]. The interaction design model emphasizes user involvement in the earlier design stages of the development lifecycle, while the LUCID process ensures user involvement from inception to final product through a sequence of six stages (envision, user and task analysis, design and prototype, evaluate and refine, complete detailed design and production, deploy and follow up).

Participatory design The inclusion of users as equal members of the design team can ensure more accurate task information, provides greater opportunities for users to influence the design, and gives users a greater sense of ownership which can lead to more successful implementation [12]. Participatory or participative design provides product developers with a model in which users are involved in every level of the design process using exploratory, experience-driven activities [12, 16, 18, 19]. This approach developed out of work done with trade unions in Scandinavia in the 1960s and 1970s in a climate where workers had a right to be involved in the design of equipment and procedures which they would have to use [20–22]. Four principles underpin participatory design: cooperation (with relevant stakeholders),

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Waller et al. Text message scheduling for diabetes

experimentation (with alternative forms), contextualization (testing in the intended setting), and iteration (modification in response to evaluation). An important aspect of usability approaches is the distinction between conceptual and formal (or physical) design [15, 23]. The formal design (i.e. what can be implemented in practice) can be left until later in the development process and consequently need not restrict the conceptual design in the initial stages. This allows non-technical team members to engage fully in the design process.

Case study: participatory design of a diabetes support system As with many research projects, the Ninewells Paediatric Diabetes Research Team approached the Medical Informatics Group in Dundee University’s School of Computing with an enquiry about using technology to support a project to provide a text message scheduling system for young people with diabetes. The design and development of a prototype system was undertaken by a fourth-year applied computing student, following the user-centred design approach. The overall aim of the design project was to provide a prototype system that could be evaluated as a ‘proof of concept’. In order to determine if a full industrial scale application was worth developing, the system had to provide at least the core functionality needed to realize the relative worth of such a system. The system was to be used by a paediatrician who required the software for her doctoral research and a successful outcome was therefore essential: the project thus lent itself to a participatory design approach [12, 16, 20–22]. The design process was iterative and took place mainly in the clinic setting (contextualization) and involved the cooperation of both designers (the computing student and the paediatrician). Paper-based and computer prototypes were used to evaluate (experiment with) various ideas. Because the project focused on the design of the system, the development lifecycle of the prototype was based on the interaction design process proposed by Preece et al. [16] (Figure 2). The project began with a requirements gathering exercise to identify the needs and establish requirements. These requirements were refined using paper-based prototypes. The paper-based prototypes led to the development of a web-based evolutionary prototype, which was modified and refined during further design sessions. A working prototype was finally evaluated and the refined prototype became the blueprint for the implementation of ‘Sweet Talk’, which was used in a randomized clinical trial [24].

Identifying the needs and establishing the requirements Initial meetings took place with additional members of the Paediatric Diabetes Research Team. The potential of using text messaging as part of the diabetic support network was discussed prior to embarking on the design process. The idea of using text messaging as a support tool for teenagers met with positive reactions. Text messaging is integral to today’s youth culture [25–27]. Introducing a behavioural support intervention delivered by text messaging has an increased chance of engaging young people, because it uses technology that is socially acceptable within the user’s peer environment [28]. Teenagers can be difficult to engage in traditional healthcare and promotion [29], but as they are typically

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Figure 2 The design process for the interactive prototype (adapted from Preece et al. [16])

‘early adopters’ of new technology, there is an opportunity for developing strategies to engage young people with e-health [28]. E-health technology can facilitate communication between adolescents and health professionals, by providing an interface that is less threatening and embarrassing, thereby increasing the accessibility and approachability of the health professionals [28, 30–32]. To increase the viability of text messaging as a means of delivering a behavioural support intervention to a large population of patients, a management system was essential to deliver automated, scheduled text messages tailored according to individual patient profiling. A broad set of usability requirements was identified during an initial brainstorming design session. The paediatrician began by outlining the requirements which she anticipated the system should offer. These requirements were then expanded and refined on paper as new ideas were exchanged within the design team (the paediatrician and computing student). Paper-based prototypes were sketched as an aid to visualize the system, providing a focus for discussion of the requirements. The main requirements included: • The system would focus on the management and delivery of text messages to patients. • The interface would be easily understood as the clinician would use the system on an irregular basis. The purpose of the system was to minimize the need for regular clinician interaction. Once the core messages were created, the clinician would be able to manage individual patients with the minimum of effort. • The content of core messages would transmit the desired message, but would be randomized to simulate natural interaction. • The system would be validated in a clinical trial, and therefore needed to produce a number of measurable results (e.g. the number of messages sent to and from each patient) for statistical analysis. The text of the messages sent to and from the system would also be stored for subsequent content analysis. • The system would be sufficiently robust to survive the rigours of a full clinical trial without failure. 308 Downloaded from http://jhi.sagepub.com at PENNSYLVANIA STATE UNIV on February 8, 2008 © 2006 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

Waller et al. Text message scheduling for diabetes

Potential users of the system were identified. The primary user of the system would be the clinician who would be responsible for the management of patient records and their individual support messages. The patients would not have direct input to the management system, but would play a part in determining the content and functionality of the text message scheduling system.

Development of core messages Following input from the student project supervisor, it was decided to use speech act theory [33] to support the automatic selection of core messages. Speech act theory states that different conversational utterances can result in the same meaning, e.g. ‘hello’ and ‘hi there’ are both greetings even though the words used are different. Randomized messages related to the same speech act have been used in augmentative communication systems for non-speaking individuals to simulate the uniqueness of conversation [34, 35]. This approach was used to develop groups of messages which would reflect core messages. Profiles were then created to allow scheduling of messages appropriate to patients’ age, gender, diabetes self-management goals and treatment regimen [36]. Examples of messages and profiles are found in Table 1. Table 1 Examples of Sweet Talk text messages Message categories

Example messages

Insulin injections Blood glucose testing

Don’t 4get 2 inject! Why not try another BG meter – check out with the team next time ur in clinic Fruit, celery or carrot sticks, pretzels, plain popcorn make healthy snax Boost ur daily activity – play ur favourite music and dnz! Do you have any ‘carb counting’ questions for the DiaBTs doctors or dietician? Y not check out a website 4 kids who use pumps – www. kidsrpumping.com n if u see any good ideas – txt us and we’ll pass them on!

Healthy eating Exercise Carbohydrate counting Pump therapy

Interface design In designing the interface for the text message scheduling system, the design of the screen layout had to be optimized to ensure ease of access to information and data manipulation. Data manipulation within medical informatics software interfaces is typically complicated and requires significant training [13, 14]. This interface had to be intuitive, as future primary users would be clinicians, who frequently have limited computing experience, do not have time to undergo prolonged training, and would use the system irregularly. The purpose of building a prototype is to provide an early model of the product so that the design can be evaluated and refined in consultation with the end-user [16, 19, 37]. Developing an incremental prototype provided the design team with a focus for discussion and experimentation. The ideas from initial meetings were implemented to allow the design team to discuss issues which arose. A total of three prototypes were produced throughout 309 Downloaded from http://jhi.sagepub.com at PENNSYLVANIA STATE UNIV on February 8, 2008 © 2006 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

••••• Health Informatics Journal 12 (4) the project’s lifecycle, each having significant interface changes from the previous versions and also implementing further functionality as they progressed in line with coding. The first prototype was a non-functional ‘concept’ design, whilst the final prototype was an almost complete version of the software. This method allowed the user to increase her knowledge of the system with each iteration and look further into the functional usability of the system. Each generation of the prototype elicited feedback about the functionality of the system, the operational sequences, and the aesthetics.

System functionality The initial requirements led to the development of the first electronic prototype. This prototype followed a traditional hyperlink-based interface design. The initial prototype was created in HTML and implemented the basic site structure to allow the user to see roughly how the system would appear. The initial layout of the main menu featured only a text link to each part of the system and no full description of the functionality. In line with a participatory approach, the paediatrician was encouraged to experiment with the prototype by performing a sequence of tasks. The user was asked to verbalize her thinking as she worked through the tasks. This method was found to be particularly useful as the user was unsure of the operation of the prototype, although she had participated in developing the paper-based prototypes. She was also reticent to try new tasks and felt more confident if she could verbalize her concerns. The ‘think out loud’ protocol [37] provided an opportunity to: (1) identify flaws in the interface design; and (2) refine existing requirements and identify additional requirements for the system. Figure 3 illustrates the main menu from which the user was able to access the different functionalities of the system by clicking the appropriate hyperlink.

Figure 3 Initial prototype showing the main menu and system functionality 310 Downloaded from http://jhi.sagepub.com at PENNSYLVANIA STATE UNIV on February 8, 2008 © 2006 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

Waller et al. Text message scheduling for diabetes

Several sessions of the ‘think out loud’ protocol were used to gauge how the system was expected to behave and to record reaction to error conditions. The ‘think out loud’ protocol was semi-structured. A list of tasks was presented to the user, e.g. ‘Schedule a message about exercise for patient X’, but the user was also encouraged to perform her own tasks, e.g. the user wanted to first check what messages about exercise had already been scheduled for patient X. This prototype proved confusing to the user who was not confident of where each link would lead, or of the areas that would be appropriate to achieve the tasks. This confirmed the need to have the system as self-explanatory as possible, with prompts for all items and context-sensitive (or as close as possible on a web project) help available from all pages. The second prototype managed the scheduling of messages by focusing on the messages themselves; messages would be chosen and then patients assigned to them (Figure 4). The user was able to identify which patients were to receive specific messages, but it was difficult to add and view messages for a specific patient.

Figure 4 Second prototype showing a simulated view of scheduled messages concerning ‘diet’

Having discovered through the ‘think out loud’ protocol that a message-based approach was problematic, a patient-centred approach was designed so that patients were chosen first and then messages assigned to them. The third prototype featured a much simplified main menu which visually separated two main groups of system functionality (Figure 5). Once again, a ‘think out loud’ protocol was used to initiate experimentation by the user. Informal comparison of the comments made by the user using the second and third 311 Downloaded from http://jhi.sagepub.com at PENNSYLVANIA STATE UNIV on February 8, 2008 © 2006 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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Figure 5 Third prototype showing the main menu and system functionality

prototypes indicated that the change from a message-based to a patient-centred system resulted in a system which was more intuitive (fewer false starts and less backtracking to achieve tasks) and pleasing to use (user commentary included comments of an aesthetic nature, e.g. ‘That’s neat’ or ‘I like that’).

Operational sequences As with all data management systems, designing the information retrieval was problematic [12, 37]. The scheduling of messages in the second prototype revealed that, although the system now captured the desired functionality, too much functionality appeared on a single page (Figure 6). Instead of requiring the user to actively retrieve data using data retrieval commands, visual access techniques such as tabs and dropdown menus simplified navigation around the system. This solution reduced the information on one screen, made the system intuitive to use, and eliminated the need for intensive training. The second prototype also highlighted further issues concerning the presentation of information when scheduling messages. Many of the options appeared ‘below the fold’, necessitating a significant amount of scrolling. This prevented the user from seeing some of the options and therefore confused the method of scheduling messages. The response to the ‘fold problem’ reflected the need to take more account of web design guidelines as opposed to traditional windows based design guidelines where scrolling is more tolerated [18, 38–40]. 312 Downloaded from http://jhi.sagepub.com at PENNSYLVANIA STATE UNIV on February 8, 2008 © 2006 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

Waller et al. Text message scheduling for diabetes

Figure 6 Third prototype showing the scheduling screen illustrating the scheduling of messages to a group of patients

Interface aesthetics The first prototype lacked any functionality, but a simulated view of the scheduled messages was available. Feedback on the aesthetics was very positive, with the colour coding of the items according to goal particularly noted as being both helpful and aesthetically pleasing. The importance of colour was demonstrated when colour was temporarily removed in the second prototype. The second interface was more difficult to use and less attractive, illustrating how the aesthetics of an interface can contribute to the usability of a product [12]. The inclusion of icons in the final prototype added to the acceptance of the system (Figure 7). The paediatrician commented that this enhanced the overall system, even in areas where the interface had not changed apart from the addition of graphical icons. It was noted by the user that the icons reflected the tasks they represented: the system was much more pleasing to the eye and was also perceived to be easier to use. The final prototype required a few cosmetic changes for the final system interface. Most of these changes reflected issues relating to the functionality of the system (e.g. the ability to sort and refine the patient list was implemented) rather than the appearance. The prototype was implemented totally within a text editor environment (UltraEdit 8), without the use of web design tools or coding environments. The database component was accessed using MySQL commands. 313 Downloaded from http://jhi.sagepub.com at PENNSYLVANIA STATE UNIV on February 8, 2008 © 2006 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution.

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Figure 7 Final prototype showing the main menu and use of icons

Testing in clinical practice A full implementation of Sweet Talk – the text messaging support system for young people with diabetes – has been evaluated in a randomized controlled trial of the use of a support network to improve uptake of intensive insulin therapy [24, 36, 44]. The diabetes team involved in the project developed a database of messages relating to the four main aspects of diabetes management (insulin injections, blood glucose testing, healthy eating and exercise); the content of these messages was divided into different types of support (information, reminders, tips, questions and motivational messages). The text message system delivers daily text messages randomly from this database related to patients’ personal diabetes self-management goals. Messages can also be scheduled in accordance with individual patient profiling, so patients receive messages appropriate for their age, sex and type of insulin therapy. In addition, topical text messages are created on a regular basis, regarding issues related to diabetes in the news (new innovations, celebrities with diabetes, soap operas portraying people with diabetes etc.), aiming to develop reciprocity and a sense of ‘community’ within the users of the Sweet Talk system. Patients also receive a text message a few days before their regular outpatient clinic appointment, with a reminder to bring their blood glucose monitor and log book to the clinic. Patients are able to send regular messages to the Sweet Talk system and therefore the diabetes team is easily accessible to patients between clinic visits. Approximately 60,000 messages were sent to patients over the duration of the study and 1400 messages were received.

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Waller et al. Text message scheduling for diabetes

Discussion This project demonstrated that participatory design methods can help to deliver a prototype for a medical software product with high functionality and usability. Close collaboration between the developer and the paediatrician throughout the cycle of design and evaluation resulted in a reliable, valid and acceptable prototype which was easily implemented in routine practice. In a randomized controlled trial (reported elsewhere [24, 36, 44]) the system was shown to have clear benefits for patients and to be a cost-effective method of offering health professional support. The prototype described in this paper was enhanced in collaboration with a commercial software company, which developed a more attractive interface. Nevertheless, the underlying design of the system was as described and the product therefore fulfilled all aspects of the brief. The user-centred development process proved useful in minimizing extraneous functionality while concentrating on the core of the system. The collaboration between the computer developer and a non-computing professional resulted in an interface tempered by the technical knowledge of the developer and the common sense of the user. This prevented the interface from being merely technically efficient without helping the user, whilst ensuring usability without an overly ‘user-developed’ interface, which may have had negative characteristics such as an overabundance of colour and layout problems. Participatory design methods are not without their drawbacks [12, 16]. Extensive user involvement can be costly in that user time is spent on design, a task not necessarily part of their normal job specification. The design process can be longer than with other approaches. As a result, users may become bored with the process. Studies also reveal that there is a chance that users may become disillusioned when suggestions are rejected while designers may be forced to compromise on design implementations to satisfy user demands [41]. However, such drawbacks are mainly characteristic of large design projects. In this study the design team mainly consisted of the paediatrician and the computing student, although the wider clinical team and an academic supervisor also had some involvement. The close collaboration between the paediatrician and the developer resulted in a truly participatory process during which the clinician was able to have an equal role in the design process. The extent to which the clinician initiated ideas and prompted modifications to the prototype changed during the project as the value of interaction and ease of initiating change became more evident. The distinction between conceptual and physical design was helpful as the clinician learnt to express ideas regardless of whether or not she thought implementation was possible. This understanding was crucial in the success of the system and has been used in developing training workshops to introduce users to the concept of user-centred design [42].

Summary The shift from ‘system-centred’ to ‘user-centred’ design has increased the effectiveness of software systems [43]. The participatory design approach used in this study yielded a reliable, functional, acceptable and usable scheduling system to deliver automated text messaging support to young people with diabetes. The longer-term usability, effectiveness and cost efficiency of the system have been successfully demonstrated in a randomized controlled trial.

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••••• Health Informatics Journal 12 (4) Close collaboration between a paediatrician and computing researchers with expertise related to the user interface ensured successful implementation and long-term usability of the new system. The members of the diabetes team involved in the project had limited computing experience, but were easily able to use the system prototype. The prototype has been extended to facilitate support and communication for all young people with diabetes in this clinic [24, 36].

Acknowledgements Stuart Gibson undertook this project as a BSc Honours thesis in Applied Computing in 2003. The project concept was awarded Best Innovation in Preventive Medicine and Best Health Innovation in the 2002 Medical Futures Innovation Competition. These awards led to sponsorship from Orange® who provided mobile phones and the costs of the text messaging for the randomized control trial and software development by the ‘Sea’. The ‘Sea’ developed the prototype into a functioning system and provided ongoing technical support for the duration of the randomized control trial. We are also grateful to the patients for their enthusiastic participation in the project.

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••••• Health Informatics Journal 12 (4) Correspondence to: Annalu Waller Annalu Waller PhD

Claudia Pagliari

School of Computing University of Dundee Dundee DD1 4HN, Scotland Tel: 44 (0) 1382 388223 Fax: 44 (0) 1382 385509 E-mail: [email protected]

Division of Clinical and Community Health Sciences University of Edinburgh E-mail: [email protected]

Victoria Franklin Maternal and Child Health Sciences University of Dundee, Ninewells Hospital Medical School, Dundee E-mail: [email protected]

Stephen Greene Maternal and Child Health Sciences University of Dundee, Ninewells Hospital Medical School, Dundee E-mail: [email protected]

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