Participatory Insight to Universal Access: Methods and Validation Exercises

Participatory methods can, in principle, be applied for a variety of purposes to gain insight into the context of use of an artefact or the way in which tasks are performed by end users. Consequently, participatory methods are equally valid for problem identification, clarification of the issues relevant to a particular topic, but also for the detailed evaluation of devices, products and interfaces. Typically, participatory methods facilitate rich empirical data sets useful for design teams and evaluators. In our case, participatory methods have been used to facilitate access to medical data by patients at home. To this end, a variety of participatory approaches are available, the more important ones being: questionnaires, face-to-face or telephone interviews based on a formal questionnaire or on an interview guide, user trials, task analysis and group discussions such as brainstorming sessions or focus group meetings. 1. Involving End-User Communities Participatory usability inspection takes as its basic premise the view that product developments should be driven from user requirements rather than from technological capabilities. End users should be encouraged to participate in design wherever possible. Thus the starting point for usability evaluation and systems design is to understand the user population in some detail, and understand what they may need from products before going too far down the path of deciding about specific design solutions. Design is often driven by technical feasibility that can lead to a poor match to users' needs. Participatory approaches are conversely concerned with ensuring that products: • have real value for end users • are matched to user capabilities • are fit for the purpose for which they were designed 272 Michael Pieper and Karl Stroetmann From this perspective, participatory approaches place emphasis on tools and techniques that assist developers in understanding more clearly the end-user demands they are designing for and the attributes of those people who will be influenced by a design. However, involving patients who are elderly, frail or suffering from certain illnesses in participatory usability inspections and systems design requires some degree of sensitivity on the part of evaluators and designers, and an awareness of the way in which most cultures stigmatise health problems. These cultural factors in turn influence the way information is captured. For example, self reports from patients often underestimate their difficulties, as problems in coping are seen as being a reflection on oneself rather than being due to a poorly designed system environment. Since many requirements for products emerge out of direct experience of using prototypes or mock-ups, these problems can at best be dealt with by an iterative methodology rather than a linear evaluation and design approach which moves directly from requirements capture through specification and implementation. For that reason participatory approaches support iterative design, recognising that in many cases developers may have to enter several cycles of “development and evaluation” before a satisfactory solution is reached. Participatory approaches emphasise the importance of obtaining good feedback about how products perform in actual use, and it is noted that this is often a lacking in design activities. Many design solutions have previously failed to gain information about how the final product will be used and consequently they are not sufficiently sensitive to the changing and developing needs of different end-users. Unlike other approaches, participatory approaches cover not only the design of the product itself but also other, wider factors that can dramatically affect the success or failure of a product for example, factors such as the environmental context in which the product will be used, etc. At the heart of participatory end-user involvement is thus the concept of usability. If products and services do not have the necessary usability characteristics they are unlikely to be successfully applied. In consequence, it is very important for developers to take into account the characteristics of different end-users, the things they do and want to do differently, and where and when they want to do them. This Chapter offers advice on how to get the relevant design knowledge about these issues. 2. Description of the Participatory Approach and Methods The key concept of participatory approaches is a design for all philosophy or strategy, based upon the principle that products should be usable by as wide a range of the population as possible. Design for all is based on the notion that by ensuring that the least able can use a product, one maximises the numbers of potential users, and also creates products which can be easier for the more able to use as well. 2.1 Problem Being Addressed The concept has much to offer, as by designing for less able groups it becomes possible to accommodate larger numbers of able people as well. For example, ensuring that health care information is accessible not only for medical practitioners Chapter 21 Participatory Insight to Universal Access 273 but for their patients as well allows for appropriate lifestyle accommodation of the patients and at the same time makes it easier for practitioners to tele-monitor patients’ health status from distance, unless excess of certain threshold values calls for professional intervention. Therefore, most generally participatory approaches allow user-involved and consensus-based design of systems to be used by different end-user communities. 2.2 Devices / Techniques Used There are a variety of instruments or devices that can be used to plan and organise a participatory inquiry. Some of them are described below. 2.2.1 Short Visits to End-User Sites Description Generally visits aim at some kind of contextual inquiry. They are best carried out by a group of researchers who develop a mediumto long-term relationship with an enduser target group (i.e., physicians and patients) who are interested in providing data. Holtzblatt and Jones (1993) have identified the following steps to organise visits for contextual inquiry: • Identifying the customer: identify the groups that will be using the new technology or are using similar technology, and arrange to access organisations within the groups that give a cross section of the overall target population • Arranging the visit: write to the targeted organisations identifying the purpose of the visit, a rough time-table, and how long of the visiting time the exercise will take. Ensure that some feedback from the visit is possible before leaving. Ensure that the participating end-users understand how many visits evaluators intend to make over the time period of the evaluations. • Identifying the users: a software product will affect many people not just the patient as end user, but also presumably his family, relatives and friends. Evaluators should ensure that they understand the key persons in this context who will additionally be affected by a new system or changes in the current one. • Setting the focus: Evaluators should beforehand select what aspects of the users' usage problems they wish to make the focus of each visit, and write down their starting assumptions. They should make a statement of purpose for each visit, and after the visit, evaluate to what extent they have achieved their purpose. • Carrying out the interview / observation: Evaluators should stay with the selected users until they have managed to answer the questions they have raised in ‘setting the focus'. Very often this may involve inviting the user to directly share and comment on the evaluator’s notes and assumptions. • Analysing the data: the process of analysis is interpretative and constructive. Conclusions and ideas from one round of observations have to be input to the next round, and an evaluation of the results so far should be one of the purposes of subsequent visits. 274 Michael Pieper and Karl Stroetmann When to use it Short visits for contextual inquiry is one of the best methods to use when evaluators really need to understand the patients’ usage context. The environment in which people make use of a system or a service really influences how they use the product. Thus, this technique is highly effective for finding out about usage practices in domains evaluators know nothing about. The technique is best used in the early stages of development, since a lot of the information the evaluator will get is subjective, e.g., how people feel about their health problems, how they deal with it by using technological means, etc. In conclusion, short visits as a complete micro-method is summarised in Table 1. Table 1. Short visits for contextual inquiry Name of method Short visits for contextual inquiry Problem being addressed Gain a better understanding of the relationship physician/patient, their respective expectations, interactions, attitudes and views Device/technique used to address the challenge Open, unstructured interviews/discussions Procedure Gain confidence of the person to be visited, explain relevance of the research, arrange an appointment Outcomes Better understanding of the specific situation of the patient, gain trust of both physicians and patients re further questioning and for pilot experiments, first hypotheses to be pursued in further research Assumptions Only a stepwise approach fully involving physicians and patients will motivate them to participate in such research 2.2.2 Questionnaires Description The questionnaire provides a structured way of gathering information. It allows for the same question to be asked in the same way to a number of informants. This enables statistical analysis of the data to be used, which allows a large amount of information to be summarised in a convenient form. A questionnaire can be constructed to investigate user experience with a product, their need for a new product, identification of how well they do with the technology they use etc. A typical questionnaire consists of a limited number of questions with pre–defined answer categories, focused on the topic of interest. It can also consist of some more open questions where the informants need to write in answers in their own words. Questionnaires are usually distributed to a sample of the target population and the responses are collected and then summarised using statistical analysis. Such a Chapter 21 Participatory Insight to Universal Access 275 questionnaire can also be used in an interview situation where an interviewer reads the questions and fills in the answers on behalf of the subject. When to use it Questionnaires are often used when there is a potentially large number of users of a product, and a developer wants to obtain information from as large a sample of these as possible. Questionnaires can be a cost effective way of obtaining background information, as the use of postal questionnaires is much less resource intensive than conducting large numbers of personal interviews, and is particularly useful when informants live some distance from each other. Postal questionnaires can be used to collect a wide range of information, including background information about the persons themselves, and their opinions regarding existing equipment and future design options. One advantage of questionnaires is that the informant can spend all the time they want in filling out the form, allowing them to make up their mind without any external pressure. For some disabled informants, this might ensure responses that would not come out in an interview or group discussion. Postal questionnaires, which do not require the respondent to identify him/herself, may also make it easier for the respondent to answer personal or potentially embarrassing questions, due to the anonymity which such techniques may provide, compared with other methods. Questionnaires can vary in the degree to which they are structured, and for postal use structured questionnaires are likely to be of most value. Structured questionnaires are useful for obtaining simple factual information, rather than complex opinions however, as respondents are forced to make simple answers to questions or to chose from limited sets of options. More open questions can be used to some extent in postal questionnaires, but as there is no opportunity to discuss the question and answers with respondents, their use in these cases is limited. Less structured questionnaires are more appropriate for use as part of personal interviews, where any ambiguity in question and answer can be resolved. In addition, less structured questionnaires are more appropriate for addressing issues, which are inherently complex e.g., the requirements that a person may have for products in the future.