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Online communities in the UK NHS
The purpose of this research
is to contribute to the understanding of sociability and usability in
developing online communities in the context of the National Health Service of
the UK. This study uses the
literature of online communities from a sociotechnical perspective in response
to sociological and e-business discourses.
The paper builds on the
sociotechnical literature on the role of online communities as information and
support tools in the realm of chronic illness management. The study uses an
interpretive and qualitative approach as its research protocol. The data that
are the basis of the study are interviews, observation, and analysis of online
messages. The study shows the
importance of formally assessing the needs of the community members before
embarking on sociability planning and usability design. The needs are used to
inform an exercise of sociability planning and usability design for an online
community. Along the way, issues specific to NHS-sponsored communities are discussed
and general development guidelines provided, setting the ground for further
research in the field. Keywords: online communities, NHS, sociability, usability, community-centred
development, healthcare To my dear parents, Maura and Humberto, and Los quiero a todos. This work represents the culmination of my MSc studies, which I could not have even started without the financial support of the Consejo Nacional de Ciencia y Tecnología (CONACYT), the Fundación Magdalena O. Vda. de Brockmann, and the Financial Support Office of the LSE. I will always be thankful to these institutions for backing up my dream of studying at the London School of Economics. I also want to thank the people at the Lambeth Walk Group Practice and King's College Hospital, London for giving me access to their facilities during my research, in particular to Dr Alasdair Honeyman, for his enthusiasm and helpful comments throughout the project. Finally, I would like to thank my personal tutor and supervisor, Dr Chrisanthi Avgerou, for the discussions and orientation about the dissertation project and the ADMIS course in general.
"At its roots, health is about applying information and accumulated knowledge to making patients better and, ideally, preventing them from getting sick in the first place."
(Lee 1998) For many years the model of the wise physician with ownership over medical knowledge has flourished (Scheerhorn 1997). In this model, healthcare was done by doctors to patients in hospital and surgeries (Baker 2002). Although patients sometimes knew more about their own diseases than their doctors, there were no ways to integrate this valuable knowledge into formal treatment schemes. This model of healthcare has prevailed in the NHS since its foundation in 1948, however with chronic illness taking over acute disease as the predominant pattern in the UK, the model has recently failed to live up to the expectations (Donaldson 2001). In consequence, a new model has been proposed, one that exists in people's behaviours and that is co-created in interactions between patients and professionals (Baker 2002). This model is being pushed forward through the Expert Patient Programme, which is based on the notion of empowerment, i.e., "developing the confidence and motivation of patients to use their own skills and knowledge to take effective control over life with chronic illness" (Donaldson 2001, p. 6). It has been argued that information is the first step towards empowerment. Rifkin and Pridmore claim that "information is knowledge, knowledge is power, and sharing knowledge is empowerment" (Rifkin and Pridmore 2001, p. 2). According to them, professionals such as doctors and nurses cannot give power to patients, but they can and should establish partnerships to encourage empowerment, as shown in figure 1. Figure 1. The need for partnerships to encourage empowerment (Rifkin and Pridmore 2001) Information and communication technology (ICT) has been named as one of the major drivers in the transition of the NHS from the old to the new model of healthcare provision (Hutton 2002). The use of ICT in healthcare began in the 1970s to provide services ranging from administrative support to telesurgery (Bashshur and Lovett 1977), however, a major revolution started in the second half of the 1990s when medical information became widely available through the Internet. It was estimated that in 1999 there were over 15,000 health information websites categorised in the Yahoo and Netscape directories (Rice 2001). However, some authors claim that further research is necessary in the area of Internet and health communications (Rice and Katz 2001a). Health communications over the Internet include the usage of websites, mailing and discussion lists, newsgroups and online communities (Rice 2001). The latter are the object of study of this report. Online communities can be thought of as sociotechnical systems made up of people, with a shared purpose, communicating by means of computers under the guidance of community policies (Preece 2000). When the purpose is centred around healthcare, community members may benefit from the social distance, and the anonymity provided by electronic interactions. Additionally, online communities can be accessed at any time and allow people to manage their interactions with others via the Internet (Walther and Boyd 2002). This paper studies an online community for families of chronically ill patients in the National Health Service. Originally conceived to provide information and support to its members, the Paediatric Liver Disease Community Space (PLDCS) was the result of an opportunity to apply ICT to 'empower patients' according to the Expert Patient Programme. However, this online community has struggled with low participation due to a lack of sociability and usability planning during the pre-birth stage. Sociability and usability are the two sociotechnical dimensions identified by Preece (2000) at the backbone of online community development. Before applying the sociability-usability framework, this study sets out to find the needs of the community members and classifies them in four main types, namely, information and advice, contact with similar families, counselling or support, and specific help needs, according to the categorisation proposed by Perrin et al. (2000). Then, to start sociability planning, these needs are employed to first, inspire the purpose or root definition of the PLDCS; second, distinguish the roles of the members; and third, establish a basic set of community governance policies. The report then goes on to usability design and undertakes an analysis of the tasks, the users' profiles, and the community software used in the PLDCS. High and medium-level tasks are determined to match the members' roles in the community by means of a use-case diagram, a standard technique borrowed from the Unified Modelling Language. Members are turned into users and the potential impact of their skills, knowledge, and socio-economic level on the overall community is also analysed.
Finally, rather than providing answers to specific software usability issues, this study provides a framework to assess the consistency, controllability, and predictability of medium-level tasks in healthcare communities. 'Online communities', 'virtual communities', and 'virtual spaces,' are all similar concepts without an agreed definition. For the sake of consistency, the term 'online community' is employed throughout this paper. The following section presents some of the attempts to define online communities from three main perspectives: sociological, e-commerce, and sociotechnical. From this perspective, social and human relationships are at the core of online communities. For instance, Wellman (1997) argues that an online community is a social network that uses computer support as the basis for communication among members instead of face-to-face interaction (Wellman 1997). Similarly, for Howard Rheingold (2000), online communities are social aggregations that emerge from the Net when enough people carry on public discussions long enough, with sufficient human feeling, to form webs of personal relationships in cyberspace (Rheingold 2000). Accordingly, Cliff Figallo (1998) describes a set of attributes that might capture the essence of connection as manifest in community in terms of relationships. He uses words like "feeling part of a larger social whole", "web of relationships", "an exchange of commonly valued things, and "relationships that last through time creating shared histories" (Figallo 1998). Sociological perspectives to online communities are rich in theory, but are generally weak in providing practical recommendations to appeal business people and technical developers. From an e-commerce point of view, online communities are meeting spaces for customers to talk about products or services offered by companies. Community developers in e-commerce are mainly concerned with deploying software solutions-either home made or tailored-in accordance to wider business strategies. Therefore, a 'hands on' approach, with no 'irrelevant academic theories' is highly regarded by e-commerce developers. Some examples of community literature in this perspective are Kim (2000) and Powazek (2001). From a sociotechnical perspective, human needs and interests are given as much weight as technical and commercial issues when new technologies are being designed (Mumford 2000). The author of this report is an advocate of this approach; therefore he chose a theoretical framework grounded in sociotechnical principles to guide his research. Such framework is community-centred development (CCD) by Jennifer Preece (2000), which is based on the following premises: User-centred design. Focus on the user rather than on technology (Norman 1986).
Contextual enquiry. Understanding of the user's context and its potential influence on the use of technology (Preece 2000). Participatory design. Fostering strong user participation throughout the design process (Mumford 1983).
For Preece (2000), the concept of online community is made up of three fundamental elements:
People, who interact socially as they strive to satisfy their own needs or perform special roles.
A shared purpose, focus on an interest, need, information, service, or support, that provides a reason for belonging to the community. Policies, in the form of tacit assumptions, rituals, protocols, rules, and laws that guide people's interactions. Computer systems, to support and mediate social interaction and facilitate a 'sense of togetherness' (Preece 2000). Sociability focuses on social interaction. Communities with good sociability have social policies that support the community's purpose and are understandable, socially acceptable, and practicable by all the people. Usability on the other hand, refers to what tasks do users actually do via the software interface (Preece 2000). Figure 2 attempts to show these two dimensions as a Ying-Yang duality in order to emphasise their complementary rather than antagonistic nature. Figure 2. The two key dimensions of online communities (Preece 2000) The central element of an online community is a shared purpose, i.e., that common interest or unfulfilled need that draws people to engage in electronic interactions (Preece 2000). The purpose should exist in the form of a clear statement so that people can decide whether or not to join and newcomers know what to expect from the community. People refer to the individuals who interact with each other and who may take roles within the community. Some may be general participants, who interchange information and support messages, while others-usually referred to as 'lurkers'-may prefer to stay silent and observe the discussions. Preece (2000) has also identified moderators, who manage discussions and filter messages, and professional commentators, who give informed opinions and guide discussions based on their expertise (Preece 2000). Finally, online communities need clear policies to guide people's interactions. Policies range from membership (joining and leaving) and privacy guidelines, to democracy, and Net etiquette (netiquette) rules (Preece 2000). Usually the moderator is responsible for enforcing community policies. Tasks refer to what people actually do via the software interface in order to achieve the community's purpose. Some examples include exchanging information, providing support, and enabling people to chat and socialise informally (Preece 2000). From a usability perspective, people who play community roles are users, that is, individuals whose personal characteristics have to be catered for by means of software design. This involves accommodating users with different skills, knowledge, age, gender, disabilities, literacy, culture, income, and personalities (Shneiderman 2000). Finally, according to Shneiderman (1998), software that supports usability should be:
Consistent. Using the same terms and procedures for achieving the same functionality throughout the programme. Controllable. Users can do what they want, when they want it and not be constrained by the software.
Predictable. Users do not want surprises, they know that if a particular set of commands worked in one situation, it will work in a similar situation (Shneiderman 1998). Most online communities pass through four stages: pre-birth, early life, maturity, and death (Preece 2000). These are shown in figure 3. Pre-birth involves most of the development effort. During this stage software is designed or selected and initial social policies are planned (Preece 2000). An initial community may be created to play a 'guinea pig' role and to seed for the community's growth. During early life developers' involvement diminishes, but their attention and nurturing is still needed to ensure that the community is successfully populated. The core community members encourage others to join (Preece 2000). In maturity, a critical mass of users has been reached and the community runs independently (Preece 2000). The developer's focus is now on moderation of ongoing conversations. Finally, when members leave and discussions slow down or cease, the community reaches its death. Usually it has served its purpose or the number of members has dropped below the critical mass necessary for it to function, or it has become dysfunctional (Preece 2000).
Developing an online community is a highly demanding activity that requires a dedicated team with the following roles (Preece 2000): A team manager, responsible for overlooking the whole process and ensuring that the deliverables are produced as scheduled. A technical specialist, in charge of the design or adaptation of the community software, usually a computer programmer. A human-computer interface specialist, for eliciting the requirements of the community members and ensuring that they are implemented in the software. In addition to this, it should be noticed that the role of moderator can be very time consuming because it involves tasks such as keeping the discussions on-topic, enforcing the policies and rules, filtering messages, and opening questions to generate discussions (Preece 2000). The aim of this paper is to inform the development of online communities in the NHS by providing an understanding of the main sociability and usability issues from the domain of chronic illness. The project was set in a healthcare environment-the NHS King's College Hospital, London. Therefore, the author hoped that the findings of this report could be applied to inform the development of online communities within the National Health Service in the UK. What are the sociability and usability factors to consider for setting up an online community for chronically ill patients and their families at the NHS?
Conducting research on the topic of online communities requires an interdisciplinary perspective, which brings together methods used in a variety of paradigms (Rice 1989). The main research paradigm chosen to develop the project is interpretivism, because in this paradigm it is acknowledged that in society there are not immutable structures to be discovered by means of mostly quantitative techniques (Preece 2000). In contrast to functionalism, interpretivist researchers prefer to become immersed in situations, to allow insights to emerge during the process of investigation, and to emphasise a shared explanation of reality, both at the individual and collective levels (Burrell and Morgan 1979). Based on this philosophy, the author chose to gain a general understanding of the case study's context by means of qualitative techniques such as interviews, observation, and interpretation of messages posted to one particular online community. Hence the study can be classified as interpretive and qualitative, which according to Preece (2000) is a valuable approach for investigating online communities. However, there is also a minor numerical component in the research regarding the quantification of messages and population of the online community.
The timeframe of the project ran from April 2002, when the author first approached the host organisation (King's College Hospital), to July 2002 when the last round of interviews was conducted and the analysis of findings began in order to submit the report in late August 2002. As far as interviews is concerned the following people participated in the research: Dr Alasdair Honeyman, the author's key contact within King's College Department of Primary Care and General Practice, an advocate of community-oriented technologies and a co-ordinator of the Paediatric Liver Disease Community Space (PLDCS). The author met up with this person in at least five occasions throughout the project in order to discuss general issues regarding the use of community technology in health care and the motivation behind it. Dr Alastair Baker, a consultant hepatologist, intensivist and paediatrician based at King's College Hospital, and also a co-ordinator of the PLDCS. He introduced the author to the topic of liver disease at the paediatric ward of King's College Hospital and discussed the implications of the new model of healthcare delivery at the NHS. Mr Stevo Durbaba, e-Resources Developer at the Department of General Practice, King's College. The author interviewed this person in order to find out the technical characteristics of the online community studied in the paper. Mrs Sue Davis, Family Support Officer at the Children's Liver Disease Foundation. An experienced counselling professional, Mrs Davis provided a very comprehensive overview of what is involved in providing information, advice, and empathic support to parents with children affected by liver disease.
Three parents of liver disease patients at King's College Hospital. The author talked with a couple that joined the PLDCS due to a four-year-old son affected by liver disease. They expressed their information and support needs. A third mother was not directly interviewed, but the author was present when she told her daughter's "story at King's" and her information and support needs to an audience during a conference. In addition to the interviews, the contents of the messages posted to the online community were read, analysed and interpreted in order to complement the author's observations.
Insights provided by the interviews and the analysis of the online messages were then framed by means of the theory found in the literature, particularly along the lines of sociability and usability. Before describing the details of the case study, this section provides an overview of paediatric liver disease in the UK, the treatment provided at the National Health Service, and the supporting role of the Children's Liver Disease Foundation. There are about one hundred different liver diseases and conditions that may occur in childhood. Some are genetic, some viral, but many occur for no apparent reason and are often life-threatening, serious conditions (Dhawan 2001). These are liver diseases that may be passed from parents to their babies. Some genetic liver diseases are alpha-1 antitrypsin deficiency, Wilson's disease, Crigler-Najjar syndrome type 1, and tyrosinaemia type I (Dhawan 2001). A number of viruses can affect the liver and cause either acute self-limiting liver disease or chronic disease of variable severity called chronic viral hepatitis. Common viral infections of the liver are hepatitis A, B and C (Dhawan 2001). Among the diseases that commonly appear during the first week of a baby's life are biliary atresia, neonatal hepatitis, and neonatal haemochromatosis (Dhawan 2001). Other childhood liver diseases also identified are progressive familial intrahepatic cholestasis, alagille syndrome, Budd Chiari syndrome, and galactosaemia (Dhawan 2001). In the past, most children with a liver disease did not survive into adolescence or adult life, fortunately, through the advancements in liver transplantation in the last decade, many children do not have to worry about premature death anymore. However, these children sometimes face reduced quality of life through the rest of their lives, which makes them into chronically ill patients (Arkley 2001). The National Health Service (NHS) is the main provider of treatment for children with liver disease in the UK. The three supra-regional units for the treatment of PLD are (Vilca Melendez 2002): In 1980, the Children's Liver Disease Foundation (CLDF) was the first charity to be established concerned with liver disease in the United Kingdom. Today it leads the field in caring for babies and children with liver disease and their families by: The National Health Service (NHS) is the UK's public healthcare system. It was established in 1948 to offer free medical care to the entire population. Its budget for 2002-2003 is about £65 billion (Boateng 2002) and it employs almost one million people. In recent years the NHS has faced difficulties in providing a quality service and, according to the UK's Secretary of State for Health, now it is "a 1940s system operating in a 21st century world" (Milburn 2000, p. 10) because it has: According to the NHS Plan 2000-2010, in order to deal with the over-centralisation and patient disempowerment issues, the NHS will develop partnerships and co-operation at all levels of care during the next 10 years between patients, their carers and families and NHS staff; between the health and social care sector; between different Government departments; between the public sector, voluntary organisations and private providers in the provision of NHS services, in order to ensure a patient-centred service (Milburn 2000). This commitment has been formally developed into a major initiative called the Expert Patient Programme. The objective of the Expert Patient Programme (EPP) is to ensure that patient's knowledge of their condition is developed to a point where they are empowered to take some responsibility for its management and work in partnership with their health and social care providers (Donaldson 2001). It attempts to do so by fostering the following generic disease self-management skills: However, some patients, by the very nature of their illness or because of other personal circumstances may find the EPP hard to access. One of the aims of the programme will therefore be to create multiple entry points for accessing information about courses (e.g. the Internet, in addition to more traditional routes such as GPs' surgeries) and to produce training materials in formats that do not presuppose a certain level of mobility, literacy or other skills, or economic status (Donaldson 2001). The Paediatric Liver Disease Community Space (PLDCS) is a Web-based discussion group sponsored by King's College Hospital in order to provide information, opportunities for dialogue and support to the families of children with liver disease and for healthcare professionals. Figure 4 shows the front page and the contents of the PLDCS. In technical terms, the PLDCS (http://pcsc.kcl.ac.uk/pld/) is one 'folder' within the Primary Care On-line Knowledge Environment and Collaborative Space, an online facility to enable communication between professionals in the Department of General Practice and Primary Care (a teaching and research department at King's College London) and King's College Hospital, London. The whole online facility was initiated and co-ordinated by two medical doctors, Dr Alasdair Honeyman, a GP and lecturer at the Department of General Practice and Primary Care of King's College London, and Dr Alastair Baker, a consultant hepatologist, intensivist and paediatrician at King's College Hospital, London. Being a co-ordinator at the PLDCS involves being a team manager and also a moderator of the conversations in the community. The collaborative space was set up in April 2002 using Web Crossing as the technological platform. The Web Crossing artefact is hosted in the Windows NT server of the Department of General Practice and Primary Care of King's College London. The technical specialist behind Web Crossing is Mr Stevo Durbaba, e-Resources Developer of this organisation. Apparently there was no human-computer interface specialist in the development team. Besides the PLDCS, the other discussion spaces available are the MSc Healthcare Informatics, Postgraduate Education and Professional Development Forums, and Primary Care Complexity. There are also some discussion folders for technical issues such as scripting tests and quick help. The collaborative space can be accessed from any Java-enabled browser such as Microsoft Internet Explorer™, Netscape Communicator™, or Opera™. Each discussion folder has its own group of members. Users of one folder cannot participate in another folder's conversations unless somebody with system operator rights-usually Mr Durbaba or Dr Honeyman-changes the member's settings. At the time of writing this report (July 2002), there were 33 subscribed members to the PLDCS, of whom 27 were parents of a child with liver disease and 6 were non-parents (health professionals). There were a total of 107 messages posted from April to July 2002, most of them (97) by non-parents. The parents contributed with only 10 messages. Figure 5 shows a pie chart with the above figures.
This pattern of participation was somewhat disappointing for the PLDCS co-ordinators, who actually expected people to interact more actively. This situation was reflected in a message posted by one of them: According to Preece (2000), community-centred design must focus on the needs of the community prior to making decisions about the technology and social planning (Preece 2000). In the case of the PLDCS, it seems that its developers assumed they knew parents' needs as a result of their experiences as health professionals in the NHS. Therefore, the emphasis was rather on designing usability features up-front, at the expense of sociability planning. The consequence of not having a set of formally assessed and categorised needs, is that the PLDCS has hardly progressed from pre-birth to early life and there is a risk of regression to pre-birth or even death of the community if social planning is not reinforced. The main reason for the emphasis on selecting and installing the technological platform of the PLDCS lies in the origin of the project. "It is not then a matter of solving a problem or responding to a pressure, but one of exploiting some new opportunity arising from advances in IT" (Avgerou and Cornford 1998, p. 23). The PLDCS was seen as an opportunity to extend the use of Web Crossing beyond King's College staff and students to support patient-to-patient interactions. Furthermore, this technical opportunity found legitimate support in the objective of the Expert Patient Programme, and it was expected that the PLDCS could eventually become an empowerment tool for the parents in managing their children's disease, as expressed by one of the co-ordinators in an introductory message: I hope it will give people a sense of achievement in looking after their children with whatever problems they have and a sense of success in having got so far so well As a result of this-technical and institutional-opportunity, the developers set out to design the usability features of the PLDCS based on their own assumptions and without much initial parent's involvement. Once the technical aspects were ready, parents were let in and found an 'alien' space, that is, something they did not feel as theirs, but as someone else's creation for them to use. For instance, one mother commented during an interview:
Which conveys a sense of 'not being allowed' or 'having to ask for permission' before performing community tasks. In a community with good sociability and shared ownership this kind of issues are dealt with well in advance by means of clear social policies. Therefore, it can be argued that by not having assessed the parents' needs and then reflected these needs into sociability planning, people do not know how to actively participate in the community conversations, which could explain the low number of contributions during the period of study. In the following sections, the author's attempt to assess the members' needs, and to further develop them into sociability planning and usability design, is described. 6.2 The needs of the PLD communityWhat drew parents to join the PLDCS in the first place? What are their needs? One major finding of this research was that parents' needs are not static, but that they change according to the evolution of their children's disease. This has been referred to as the emergent or unfolding character of chronic illness (Bury 1991). According to Radley (1994), chronically ill people and their families pass through the following stages (Radley 1994): Stage 1. Seeking help for symptoms. Parents seek medical advice depending on the perceived severity of their child's symptoms. However, determining severity sometimes depends on experience and subjective appreciation. For instance, some typical symptoms of liver disease in babies such as jaundice, dark urine, and pale stools are often overlooked by novice parents, which can have fatal consequences. Early detection of liver disease symptoms before eight weeks of age have resulted in an 86% success of Kasai operations, against 36% of success if detection takes place after this period (Mieli-Vergani et al. 1989). In the NHS, health visitors and GPs are trained to detect PLD symptoms and to refer patients to a specialised liver unit, such as the one at King's College Hospital, nevertheless, the process could be sped up by enabling-empowering-parents to detect symptoms by themselves very early on. Stage 2. Diagnosis: the problem of uncertainty. Parents described this stage as the most apprehensive of the disease because of the dreaded consequences of PLD, and the complexities and uncertainties of treatment. In the realm of chronic diseases, this stage has been called an 'informational crisis' (Ray and Baum 1985), because information-gathering becomes a strategy to reduce the feeling of uncertainty and produce a feeling of control (Radin 1998). Stage 3. After diagnosis: the problem of disruption. A diagnosis of liver disease in a child is devastating for a family because many taken-for-granted hopes and expectations are shattered in an instant (Arkley 2001). Therefore, at this stage parents look for mechanisms to cope with the disruption in their daily lives in addition to their information-gathering strategy. These coping mechanisms may be cognitive, (i.e., a way of thinking), or behavioural, in the form of a course of action (Radley 1994). Just like PLD, online communities also have an evolving nature. This has been acknowledged by Kim (2000) in her first underlying principle of community development: design for growth and change (Kim 2000). Therefore, the PLDCS has the potential to accommodate parents in different 'stage subspaces', or special discussion rooms that can evolve in parallel to the three stages of disease. From the previous analysis it appears that information-gathering and coping mechanisms are the two higher-level needs of parents to PLD patients. Nevertheless, a more fine-grained categorisation is required to inform the development process of the PLDCS. In order to do so, the classification proposed by Perrin et al. (2000) has been used. They conducted a rigorous survey of families with children affected by a chronic health condition and grouped the needs of parents into the following categories (Perrin et al. 2000):
6.2.1 Information and adviceInformation is key during the diagnosis stage according to one CLDF Family Support Officer. Fortunately, now information is available from many sources, particularly through the Internet, however, parents have found that its unedited format can create confusion and conflicting views, therefore increasing their stress and anxiety. To avoid this, it is important not to publish all medical information on a website, but rather to consider each family as an individual case and provide information accordingly (Arkley 2001). During an interview with a patient's mother, she pointed out that she was relying on the CLDF website (www.childliverdisease.org), in addition to US-based Children's Liver Association for Support Services website (www.classkids.org), instead of the PLDCS for up-to-date information on treatments and medical advancements in PLD. Therefore, if the PLDCS is expected to successfully compete with such sources of information, it has to leverage on its potential to provide focused and local contents to the members within the specific context of King's College Hospital and each family's individual case. That particular mother for instance, was very interested in reading simplified abstracts of medical papers written by King's College staff. 6.2.2 Contact with similar families"What is normal behaviour in a child with PLD?", "Is my child different to other PLD patients?", "Will someone listen to me?" These are typical questions that parents want to discuss with other families. By establishing a dialogue with people in a similar situation, parents can 'benchmark' or validate their information-gathering strategies and coping mechanisms. Eventually, if these contacts are maintained over long periods and more families get involved, a 'shared repertoire of resources' could be developed, including frameworks, ideas, tools, information, styles, language, stories, and documents around the PLD domain, giving rise to what is known as a community of practice (Wenger 1998). However, according to one co-ordinator of the PLDCS, "the buddying up of families is a delicate issue and some families are a little ambivalent about that." The approach suggested by the CLDF is to ask any parents wishing to communicate with other parents, to write down their specific interaction needs and then to find out a counterpart. Such a procedure respects other families' privacy rights and provides a way to disclaim any responsibility from the mediator in the case of dysfunctional relationships, which might occur, for instance, when the child of one of the families worsens or dies while that of the counterpart does very well. 6.2.3 Counselling
Hi our family has joined because [male name 1] ( aged 15 ) did have Hepatitis C from a blood transfusion. I say did because he has had Interferon & Ribavarin therapy and thankfully been clear for six months now, Long may it continue ( we hope & pray) We are [female name] & [male name 2] ( Parents ) [male name 1] & [male name 3] ( aged 15 & 11 ) [male name 1] previously had Leukaemia 12 yrs ago ( successfully in remission) We are hoping to meet other parents & children who may have similar probs with Hep C. ( we hope as [male name 1] has had combination therapy) we can help others who may be considering it as an option. Interviewed parents expressed their willingness to provide counselling for and receive it from other families with different levels of experience. Counselling can be viewed as a combination of the two previous categories of needs, i.e., information and advice, and contacts with other families, plus an added dimension: social support. Social support communication is traditionally considered to be the exchange of verbal and non-verbal messages conveying emotion, information, or referral, to help reduce someone's uncertainty or stress, and, whether directly or indirectly, communicate to an individual that she or he is valued for others (Walther and Boyd 2002). Four types of functional support are defined (House and Kahn 1985):
Three out of these four types of functional support can be carried out in online communities such as the PLDCS-instrumental support usually is excluded because it requires physical, face-to-face contact. As for emotional support, Preece and Ghozati (2001) stress that one of the key factors in online support communities is empathy, i.e., the ability to identify with and understand another person's situation and feelings in online interactions (Preece and Ghozati 2001). In healthcare communities empathy can be encouraged and online hostility minimised through moderation and enforcement of expressly formulated social policies. 6.2.4 Specific help needsParents and CLDF representatives raised a number of PLD-specific issues during the interviews, among them: Financial costs of hospital stays and visits. Frequent hospital visits may incur in travel expenses, special dietary requirements, and extra diapers. On the other hand, lengthy periods spent in hospital result in costs of eating out, increased telephone bills, and unpaid leave. Claiming disability living allowance. Some parents are interested to know whether or not they qualify for welfare assistance, given the extra costs incurred due to their children's liver disease. Graphically visualising the results for bilirubin and blood tests. Some parents have the skills to plot the results of these tests by means of standard spreadsheet software, however, for those who do not have these skills, an online tool to keep track of these physiological variables could be very useful. Including siblings in family support schemes. Anxiety feelings of brothers and sisters are often diminished in relation to those of PLD patients and their parents, therefore, discussion spaces for them should also be provided. Teenage issues. As more children reach adolescence and adulthood, the following issues were mentioned:
6.3 Sociability planning of the PLDCSHaving assessed the needs of the people for whom the PLDCS was intended, sociability planning was undertaken as shown in the following sections. 6.3.1 Purpose: information and supportBecause the needs of the parents are not static, the purpose of the PLDCS will change over time. However, having identified their needs will help to focus the development effort by defining up-front what type of community they want, why they want it, and who they want it for (Kim 2000). The author attempted to express the purpose of the PLDCS by means of a root definition, i.e., a high level statement attempting to capture the essence of the system (Wilson 1984). The root definition (RD) of the Paediatric Liver Disease Collaborative Space can be stated as follows:
Customers. The beneficiaries or victims affected by the system (Avgerou and Cornford 1998, Wilson 1984): parents of children affected by liver disease and treated at King's College Hospital, London. Actors. The agents who carry out the main activities of the system (Avgerou and Cornford 1998): mainly parents of PLD patients, but also health carers at King's College Hospital, London. Transformations. The core of the RD, it refers to the changes performed by the actors on the customers via the system. For the PLDCS this means parents are 'transformed' in the following ways:
Weltanschauung. This German world means 'world-view' and refers to the unquestioned outlook or taken-for granted framework which makes the RD a meaningful one (Wilson 1984). In the case of the PLDCS, the most fundamental assumption is that liver disease as a chronic illness can be managed and quality of life can be achieved. At least this is what parents, healthcare professionals (Baker 2002, Singer 2002), counselling professionals (Arkley 2002a, Davis 2001), and public health officials (Donaldson 2001, Lee 1998, Milburn 2000), all seem to agree on. Owner. That who has a prime concern for the PLDCS and the ultimate power to stop it (Checkland and Scholes 1999). It can be argued that King's College Hospital is the only owner of the PLDCS as it can 'shut it down' by withdrawing both technical resources (Web Crossing) and staff's involvement. However, by not engaging in online interactions, parents are bringing the whole facility to a halt, therefore they should also be considered as owners of the system. Environmental constraints. Elements outside the system which might affect its operation, such as the NHS statutory constraints, privacy regulations, codes of ethics, community-oriented technology (Web Crossing), the World Wide Web, Internet Service Providers, and other PLD websites worldwide. 6.3.2 People: parents and health professionalsThere are two kinds of members to the PLDCS, parents and non-parents. All parents-both mothers and fathers to PLD patients-have in common that they have a child affected by a liver disease. The age of children varies between 0 and 15 years, and they have received treatment at King's College Hospital, often in the form of a Kasai operation (a surgical procedure to correct biliary atresia) or a liver transplant. In the previous section of this report it was shown that parents joined the PLDCS in order to receive and provide information, advice, counselling (social support), and to make contacts with similar families. According to the author's observations, parents are playing the roles of lurkers and general participants, according to Preece's (2000) suggested classification, although they can be eventually expected to perform moderation roles. Parents as lurkers'Lurkers' are people who only read messages but never post anything, either because they feel their contributions are worthless or because they do not want to acknowledge their membership to an online community (Preece 2000). In many communities, people spend some time 'lurking around' in order to understand the topics and tones of conversations before participating actively, especially in communities that have not yet reached their critical mass, i.e., the amount of people and activities required to make it interesting and worthwhile (Preece 2000). In an interview with a mother, she acknowledged that the PLDCS was not yet an interesting place given the low number of participants. In order to make the transition from lurkers to participants, moderators have to play their part and push ahead the conversations by posting relevant discussion topics based on the needs of the members. Parents as general participantsSome parents have already made the transition from lurkers to participants and have started to post messages. Their messages reflect their need of getting in touch with other families for information and advice, as well as empathic support and counselling. Non-parents: professional commentators and moderatorsIn health communities, nurses, doctors and other medical experts are often expected to say who they are to the group and to contribute with informed comments and professional advice. Their presence changes the knowledge hierarchy, which can have both positive and negative impacts on the community (Preece 2000). In the PLDCS, besides providing professional comments, the presence of a well-known consultant hepatologist provides a source of trust to the community as a whole, first, because all the parents have already met up with him during their children's treatment, and second, because all the membership requests to the PLDCS are eventually approved by him, therefore, filtering out any less serious or ill-intentioned person. Moderation is the other community role performed by a non-parent member of the PLDCS, specifically, by Dr Honeyman, the King's College lecturer and knowledge management facilitator. However, both co-ordinators and parents acknowledged the need to allocate moderation responsibilities to the parents on a voluntary basis because, given the time consuming nature of moderation, the two co-ordinators cannot be expected to give up their professional duties in favour of the PLDCS. An alternative to the role of the moderator is that of mediator, i.e., somebody who is called to arbiter specific disputes on an occasional basis (Preece 2000). 6.3.3 Policies: create, enforce, and evolveClear policies are needed to indicate what people can or should do and what they cannot or should not do in a community (Preece 2000). The PLDCS has the following basic policies: Membership. The community is open to parents whose children have received PLD treatment at King' s College Hospital, London. Any parents may request the co-ordinators for membership to the PLDCS. Communication protocol. All communication must be respectful, based on the principle "do not say to someone else something you would not want said to you". Ownership and moderation. The online space is not the intellectual or moral property of King's College Hospital but of the members themselves. Hence, self-moderation is not only welcome but also expected. Confidentiality and privacy. All messages will go to all members so there can be none of the confidentiality rightly expected when people visit the hospital or doctor. Members are discouraged to write anything they would not want a stranger to know about their children and their liver condition. King's College will not share e-mail addresses with any individual or company outside of the PLDCS. The above rules are based on general community governance and netiquette principles, however they need to be further developed after a trial period of enforcement in the PLDCS. According to Kim (2000) given the changing nature of online communities, all community policies go through a create-enforce-evolve cycle (Kim 2000). For example, in the case of confidentiality, while some parents requested anonymity by hiding their ID and e-mail address in the posted messages, others wanted to have access to a searchable database of parents in order to contact them according to type of liver disease, location, or age of children. Since there may not be different policies for different members, an agreement has to be reached after evaluating the outcomes of enforcing this zero confidentiality rule. 6.4 Usability design of the PLDCSThe goal of usability is to enable users to effectively perform what they want to do in order to contribute to the community's purpose (Preece 2000). This is achieved by providing functionalities to support the different tasks to be performed by members according to their roles in the community. 6.4.1 TasksThe four community roles discussed in a previous section are: general participants, lurkers, professional commentators, and moderators. According to their roles, members are expected to perform different tasks. Preece (2000) argues that tasks can be thought of in hierarchical levels, from high to medium and low-level tasks (Preece 2000). High and medium-level tasks for the PLDCS are shown in table 1.
Table 1. High-level tasks for the PLDCS In addition to the medium-level tasks shown in table 1, tasks such as edit/delete message, and add/delete user should also be considered, as they are needed to moderate the community. In order to illustrate the relationship between people's roles and their tasks, a graphic tool has been borrowed from the Unified Modelling Language (UML): the use-case diagram. A use-case diagram is made up of two components, the actors, which refer to the roles that users play with respect to the system and the use-cases or system-required functionalities. In standard UML, users are normally represented as stick figures, while use-cases are displayed as ovals. The links between actors and use-cases are shown as straight lines (Fowler and Kendall 1997). Figure 6 illustrates the use-case diagram for the PLDCS. 
Figure 6. Use-case diagram for the PLDCSRead messageThis is the most fundamental of all community tasks and consists in displaying a text message on a computer's screen for every member to read. Compose messageWriting new messages, and replying to messages are included in this medium-level subtask. However, since written communication is less rich than verbal communication, in a health community such as the PLDCS, it has to be ensured that people know how to reflect empathy by means of emoticons such as :) and :(, use of capitalisation, characters (!!, ??), or other typographical and visual aids that indicate emotion and empathic communication (Preece and Ghozati 2001). In the use-case diagram, only lurkers do not compose messages, as they limit their participation to reading messages posted by someone else. Search message and userBecause messages posted to online communities are stored in a server, they can be retained and accessed for long periods (Brennan and Fink 1997). This feature is particularly attractive because in this way, new members do not have to 'reinvent the wheel' by themselves and can instead access an information repository such as the PLDCS is intended to be. For parents seeking to contact similar families, searching the user database is a fundamental task. However, as some families may ask for confidentiality and opt for lurking, displaying their profiles and contact data to other members could violate their privacy and interaction preferences. This issue can be addressed by means of a policy stating that the moderator is the only person authorised to search the member database and arrange meetings upon request from one family, such as the CLDF does. As for lurkers, it has been argued that right to search the member database is too great a benefit for them because they do not contribute to the community (Preece 2000). However, according to several members of the online community-both parents and professionals-, they do not mind having lurkers in the PLDCS; on the contrary, they say that the more people that can benefit from the online discussions, the better. Therefore, in the PLDCS, lurking parents should be able to search and read messages without their presence being acknowledged by others, according to their confidentiality preferences. Edit and delete messageMessage edition should be reserved exclusively to the moderator of the PLDCS. In the use-case diagram shown before, message deletion is shown to 'extend' the use of edit message, because in the extreme situation of a message not being in compliance of the policies after edition, the moderator should be able to remove it from the system. Also, if parents are to become co-moderators of particular subgroups within the community, they should eventually be granted permission to edit and delete postings within those spaces. Add and delete userAnother moderator-only task, it consists in signing in new members and removing users after long inactivity, policy violation or sign out request. This task should be backed up by a clear membership policy on signing up and leaving the community. 6.4.2 UsersThe members of the PLDCS may have similar information and support needs, however, they differ in some other ways. This human diversity can determine the way they perform their roles and influence the life of the community. Socio-economic levelAccording to the King's College Hospital-based doctor, the population served at the hospital is a cross-sectional representation of British society. Therefore, there is no predominant social or economic pattern that could decisively influence the tone or content of the online interactions. However, further research-which is beyond the reach of this paper-would be necessary to verify this claim. Internet access and computer literacyAccording to recent reports (Nua.com 2002), between 33 and 34 million people have access to the Internet in the UK, approximately 56% of the total population. Based on this datum and on the claim presented in the previous section, it can be estimated that about the same percentage of parents to PLD patients at King's College Hospital have Internet access. In the case of PLDCS members, it can be assumed that all the members can be online at a certain moment in time, either from home or work locations. However, further research would be needed to assess the Internet access patterns of the community members to back up this assumption, because, for instance, during an interview, one mother said:
As far as computer literacy is concerned, the developing team of the PLDCS assumed that all the members have a basic set of ICT skills, namely, how to use a web browser and how to post messages in online communities. As in the case of Internet access, further research would be needed to validate this assumption. Knowledge and experienceThe level of knowledge and experience across parents varies and is greatly influenced by the PLD stage their children are at. During the pre-diagnosis and diagnosis stages the most critical and intensive learning takes place, and it is only after diagnosis-with its disruptive implications-that parents become real 'experts' in the field of chronic disease. This can be read in the following message from the PLDCS:
[female name 1] & [male name], parents of [female name 2] - Glycogen Storage Disease 3 Alastair invited us to join the site a while ago when [female name 2] was diagnosed with GSD3 in February 2002 at 9 months old. We're still fairly new to the disease and getting to grips with the whole metabolic disorder which affects her liver and are hoping to 'meet' other GSD3 families or people whose babies have had NG tubes and then virtually stop eating orally - our biggest problem at the moment! [...] I hope in time we can be more useful & pass on help & info too! Therefore, it can be expected that parents new to the disease will get the greater benefit from the community, and, as they become more experienced along the way, they will benefit marginally, but their information, advice, and counselling will be highly valued by the community. GenderPreece and Ghozati (2001) suggest that the ratio of males to females in online communities appears to influence empathic communication. Higher numbers of women seem to be associated with empathic communication. However, this gender influence is less in support communities, which tend to be empathic regardless of gender balance (Preece and Ghozati 2001). In the PLDCS there are 22 males and 11 females, however, males have posted 98 messages and females only 9 in the period studied. This raises the issue of whether or not more female participation should be fostered according to the community purpose. Perhaps it should, because, as the author observed during a PLD study day at King's College Hospital, nearly all the health visitors and nurses are females-on that occasion the author was the only male present-and such valuable feminist perspectives are not being reflected in the online conversations. 6.4.3 SoftwareWeb Crossing is the software platform of the PLDCS. This discussion group product by Web Crossing, Inc. (www.webcrossing.com) was chosen by one co-ordinator based on his experience as lecturer and knowledge management facilitator at King's College London. This decision was also backed up by Etienne Wenger's 2001 survey of the market of community-oriented technologies, in which Web Crossing was ranked as the product that most closely supports conversations in communities of practice (Wenger 2001). However, one interviewed mother expressed that she found the PLDCS rather difficult to use, particularly in comparison with other discussion groups such the forum provided by the US-based Children's Liver Association for Support Services (www.classkids.org/cgi-bin/dcforum/dcboard.cgi). In order to elicit the specific difficulties that users may encounter in using the PLDCS, the author suggested an evaluation scheme based on Shneiderman's software usability features: consistency, controllability, and predictability (Shneiderman 1998) and the five medium-level tasks discussed earlier in this paper. The proposed scheme is shown in table 2.
The usability evaluation scheme is intended to be used to survey parents and non-parents in their roles as participants, professional commentators, and moderators. Its purpose is to help community developers to know whether or not members have been able to interchange information and advice, and to provide empathic support in a consistent, controllable and predictable manner by means of the Web Crossing-based PLDCS. For moderators, in addition to the above, it is important to know if they can always be in control of their moderation tasks (search message/user, add/delete user, and edit/delete message) and to find out whether or not they can perform these tasks consistently, knowing that Web Crossing will not come up with unpredictable outcomes. One recommended way to survey the community members by means of the usability evaluation scheme is to place them in from of a computer and ask them to perform community tasks within the PLDCS while the researcher writes down his or her observations. An alternative option is to send out the scheme for members to complete it. Unfortunately, due to time and resource constraints, it was not possible to carry out any of the two evaluation alternatives. Nevertheless, the author remains confident that it can be employed as a guideline to further elaborate the usability features of Web Crossing as the technical platform of the PLDCS. Chapter 7. Limitations and further researchA reduced sample of parents and the stressful nature of the healthcare domain are the two main limitations of this study. However, it is from these limitations that further research opportunities arise. The first limitation derives from the fact that most of the members of the online community are widely dispersed throughout the London area and, since they seem reluctant to engage in electronic communication, talking to them face-to-face or via telephone interviews, would have meant resources and time that were not available to the researcher. In consequence, a more rigorous characterisation of them in socio-economic, Internet access, and computer literacy terms was not possible. Therefore, some of the findings of this study can be revised under the light shed by a more detailed description of a larger sample of parents. This study captures some of the parents' needs and opinions and tries to make sense of them from an interpretivist paradigm, however, also because of a reduced availability of parents, it relied to a great extent on a third party-namely the CLDF-as an source of information. As a result of this, the author acknowledges that the findings can be biased to reflect the Weltanschauung of this organisation. Hence, extensive parents' participation could be used in future projects in order to enrich the findings of this report. An third consequence of a reduced availability of parents, combined with the constraint of time, is that the study was unable to pinpoint the specific problems of software usability in terms of consistency, controllability, and predictability. However, by means of the proposed evaluation scheme, a complete assessment exercise of the PLDCS can be conducted, leading to an increased understanding of usability in healthcare communities sponsored by the NHS. As far as the second limitation is concerned, the author found that conducting research in healthcare is particularly stressful due to the sensitive and emotional state of the parents-one mother burst into tears while telling her daughter's PLD story-thus reducing the author's planned amount of face-to-face interviews. Nevertheless, appropriate emotional training or the participation of emotionally trained researchers may help to overcome this limitation in future studies. Chapter 8. ConclusionsDeveloping online communities in order to empower patients is legitimised by the modernisation efforts of the NHS-in which ICT plays an important role-, and the commitments made through the Expert Patient Programme. This way of applying ICT reflects the notion that knowledge and experiences of families of children with liver disease can be 'exploited', i.e., captured, stored, transferred, and deployed throughout a group of people, without restrictions of time and location of individuals (Swan et al. 1999, Whitley 2000), as was expressed by one co-ordinator during an interview:
However, the main downside of this ICT-led perspective is an emphasis on the technical design of online communities as 'knowledge management systems', with the consequent lack of serious efforts to understand the social elements of such sociotechnical systems. This situation seems to be reinforced when health professionals play the role of developers and tend to assume that, based on their experience, they know what the patients' needs are, and proceed directly to design usability features of community software. However, by not formally assessing community needs and reflecting them in a statement of purpose, sociability planning can be underestimated and, as a result of this, the community would be at risk of wasting further usability efforts by failing to attract a critical mass of users and hence, never reaching maturity. Therefore, patient participation should be encouraged throughout sociability planning and usability design, in order to reflect as many relevant 'world-views' as possible. One of the main outcomes of such a participatory approach is the shared ownership of an online community, i.e., members feel as co-creators rather than part of a passive audience, and they will more likely be willing to make the transition from lurkers and general participants to voluntary moderators of specific subspaces based on their particular interests and time availability. Chronically ill patients and their families rely on information seeking and coping mechanisms as the main strategies to manage disease and improve their quality of life. Therefore, any online community aimed at helping them, should allow the interchange of information, advice and empathic forms of communication within a trusted and secure environment. Information from a disembodied source has limited value and soon lacks appeal (Preece 1999), hence the opportunity for NHS-sponsored communities to provide an embodied environment of trust-backed by the reputation of King's College Hospital as a leading centre for the treatment of PLD-where patients can discuss their problems within a meaningful context. The above issues should be clearly reflected in a set of unambiguous policies to be enforced by the moderator. These policies should be tested against the community's purpose and adjusted or amended participatively by the members of the community. In a healthcare community such as the PLDCS, policies should cover community governance issues such as membership procedures, netiquette-with an emphasis on empathic communication-, and privacy. However, these sociability issues would be meaningless if there is no usability design to support them. To start with, tasks to match the members' different roles should be determined at the appropriate level of granularity-either high-level, such as exchange information or medium-level such as search message. It is important to reserve tasks such as edition of messages and deletion of users to the people in moderation roles, and to enable the performance of general tasks such as composing a message, to the rest of the community members. Members of health communities want to perform their communication and support tasks consistently. They want to be in control of the software and to predict the outcomes of their intended tasks. Therefore, community software should be evaluated on the basis of consistency, controllability, and predictability by means of ad hoc evaluation schemes such as the one proposed by this research. 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