Partnership working: the key to the AT- technology transfer process of the ACTION service
Lennart Magnusson, Senior Lecturer, Department of Caring Sciences, University of Borås & Department of Health & Caring Sciences and eHealth Institute*, Linnaeus University*, Sweden, Elizabeth Hanson, Senior Lecturer, * & FoU Sjuhärad Research Centre, University of Borås, Sweden, Visiting Reader, University of Sheffield, School of Nursing, UK.
Invited submission for a special issue of the ‘Technology and Disability’ Journal focusing on Assistive Technology (AT) technology transfer from the AATE conference in Sheffield, UK, October 4-5th 2010.
Submission date: February 23rd. 2011.
Corresponding author:
Elizabeth Hanson
c/o Gamla Kungsgatan 13
39233 Kalmar
Sweden
+46 480418022
+46 703614946
Acknowledgements
We acknowledge the knowledge and skills of all those people involved in the research, development and implementation of the ACTION service in the municipalities without whom this paper would not have been possible. We would like to recognize financial support for our research work regarding technology transfer by the Swedish Institute for Assistive Technology, Emil and Wera Cornells foundation and the Vinnvård programme financed by the Vårdal Foundation, VINNOVA Swedish Innovation Agency, Swedish Association of Local Authorities and Regions and the Ministry of Social Affairs. Finally, we acknowledge Mike Nolan, Professor of Gerontology at the University of Sheffield, UK for acting as mentor and providing strategic guidance and inspiration for our work.
Abstract
ACTION (Assisting Carers using Telematics Interventions to meet Older people’s Needs) stemmed from an EU-funded project (1997-2000) and is an Information and Communication Technology (ICT) based support service designed together with frail older people and their family carers to help empower them in their daily lives by providing access to web-based educational programmes and support from other ACTION families and dedicated care practitioners via the use of an integrated videophone system. It is currently running as a mainstream service in Borås municipality in West Sweden and as implementation projects in an additional twenty-five municipalities across Sweden. It is well recognised that there are relatively few examples of telecare projects that have successfully managed the transfer to a mainstream service. Based on our fourteen years of experience with the design and implementation of ACTION, we reflect on the major lessons learned. This paper highlights the user centred design model developed and refined during this period, including the range of methods for working in partnership with a variety of stakeholder groups at all stages of the technology transfer process of the ACTION service.
Keywords:
Introduction
ACTION originated from an EU funded project involving universities and care providers in England, Northern Ireland, the Republic of Ireland, Portugal and Sweden. It was funded within the Fourth framework of the TIDE (Telematics for the Integration of Disabled and Elderly) initiative. Following its completion in 2000, the Swedish partners who were the co-ordinator of the project, secured successive funding at national level to further research and develop the ACTION concept and subsequently commercialise and implement the service in a number of municipalities in Sweden. In this paper, we attempt to answer the question of how and why we have come thus far in the processand,at the same time, why we have not reached out to all 290 municipalities in Sweden. We begin by describing the ACTION service itself prior to highlighting the conceptual basis for our work which centres on partnership working and is operationalised in a user centred design process. We argue that this model represents a critical success factor concerning the transformation of ACTION to a fully fledged support service within Borås municipality. Over the years there has been increasing focus placed on user involvement such that it has become a political mantra and a necessity in policy, research and practice arenas alike. Within the field of assistive technology the involvement of end users is regarded as fundamental, yet it is often taken for granted and is rarely subject to sufficient scrutiny with regards to appropriate levels and/or degrees of involvement and its actual impact or efficacy. We intend to illustrate how we have gone beyond the rhetoric and engaged in authentic user involvement by highlighting the various ways in which we have engaged with different stakeholder groups of the ACTION service over a fourteen year period. During this time span it can be seen that ACTION has undergone all the main stages of the AT-technology transfer process. Namely, from the initial stage of user requirements specifications through to building a business case and subsequently marketing the service. We reflect on the major lessons learned during this process and share ways in which we have attempted to overcome the major challenges in the field.
An overview of the ACTION service
The overall aim of the ACTION service is to maintain or enhance the autonomy, independence and quality of life of frail older people living at home and their carers. It consists of ICT based information, education and support to enable them to make informed decisions about their situation in order to make their daily lives easier to manage [1]. ACTION consists of four major integrated components:
- Multimedia educational programmes
- ACTION station
- ACTION call centre
- Education and supervision
Multimedia educational programmes
First, the multimedia educational programmes are based on carers’ and older people’s needs identified from the empirical literature and extensive user consultation in the EU and Swedish projects. These programmes are: caring skills in daily life; planning ahead; respite care; financial and economic support; and coping strategies. More recent education programmes arising from additional projects include living with dementia, stroke and a guide to services, as well, programmes for physical and cognitive training and online games for leisure and social pleasure [1-3].
ACTION station
Second, the ACTION station consists of a personal computer with broadband connection which is installed in each family’s home. Families also have access to the Internet itself and email facilities. The multimedia programmes are accessed over the Internet. Internet videophone facilities are provided via a small web camera placed on top of the computer screen and an integrated user-friendly videophone programme installed in the computer. This enables families to have visual and oral contact with other participant families, as well as with care practitioners at a dedicated call centre.
ACTION call centre
Third, the ACTION call centre is run by practitioners who have extensive experience of care for older people and their families. They maintain regular contact with families to ensure they are managing their situation as well as providing advice and support on an as need basis. They are also responsible for the education and facilitate and maintain the informal networks between the users.
Education and supervision
Fourth and finally, families are invited to take part in an initial education programme to learn how to use the ICT based service as the majority of users are predominantly computer novices. This consists of a series of small group ‘hands on’ education sessions run by the call centre staff which enable participants to get to know each other and subsequently initiate videophone contact with each other. Likewise, a comprehensive education, follow-up and certification programme including regular supervision is targeted at care practitioners working in the ACTION call centres in the municipality [2].
These four components are also referred to later in this paper with regards to methods of partnership working employed within the different phases of the AT technology transfer process concerning the ACTION service.
Theoretical basis of ACTION
The rationale for the original EU ACTION project stemmed from well-known demographic ageing trends combined with the challenges concerning fiscal constraints across EU member states. The EU project sought to focus on finding innovative solutions to supporting family carers of older people given that there was growing evidence that family members were increasingly bearing the brunt of the care for aged relatives. At this time, the focus on seeking new ways of supporting family carers of older people via the use of ICT was novel in Europe. Pioneering work in the field had been conducted earlier in the States by Brennan with the development of the Computer link programme for carers [4]. However, this model was largely professionally driven. Taking inspiration from this ICT based intervention, the EU ACTION project was grounded within the ‘Carers as Experts’ model [5-6] which regards experienced family carers as experts concerning their individual caring situation. Experienced carers develop first-hand knowledge and skills regarding how best to care for their older relative. However, such tacit knowledge is most often learnt on a ‘trial and error’ basis which can be stressful, time consuming and in the long term can adversely affect the carer’s own physical and mental health. Nevertheless, professionals can play an active role by helping novice carers to become experts a quickly as possible by providing them with appropriate information, education and support to help them mange their situation. In this way the older person, carer and professionals can all be viewed as ‘co-experts. The older person and carer bring their localised knowledge to the situation, that is, their in-depth knowledge and skills with regards to their individual situation and at the same time the professionals bring their ‘cosmopolitan knowledge’ to the situation which is a more generalised practical knowledge which they develop over time as they work with many families who have different situations. Together they can endeavour to find the optimal solution for problems that may arise during the course of the illness and caring trajectory that will help the couple in their everyday lives [7]. Thus, in this model, the role of professionals is to work more as educators and partners in their care as opposed to ‘doing things’ for them. Thus, partnership working involves sharing knowledge and skills and learning from one another.
User centred Design model
The philosophy of partnership working lies at the centre of the user centred design process for the research and development work of the ACTION service which was grounded in principles of democratic participation and skill enhancement found within the Scandinavian design model [8]. This model actively involves skilled users in the design process based on the belief that collaboration between users and designers leads to a successful design and ultimately high quality products and services. Ehn [9] referred to this way of working as a process that supports more creative ways of thinking and doing design as participatory work involving the skills of both users and designers.
Within this participatory framework, Nielsen’s model of system acceptability was also actively referred to as it provided an in-depth explanation of the concepts of acceptability and usability which are seen to be central considerations for successful design [10]. Acceptability is concerned with whether a product or service is used over time so that it becomes incorporated within the users’ daily lives as readily acceptable to them. In order for a product or service to be practically acceptable it is important that it is useful, in other words that it is of direct benefit to people in their particular situation. At the same time, it is important that its cost is seen as reasonable by the user and that it is compatible with other products and services the user may have, as well as being reliable. Equally, the service must be seen as socially acceptable by the user so that it is consistent with the recognised norms and values operating in society and thereby enhances the user’s social status. In practical terms usability requires the service to be easy to learn, easy to use, easy to remember, enjoyable and with a low error rate. Finally the product or service must do what it is supposed to do, namely it has to demonstrate good functionality or utility [8, 10]. All these criteria were important considerations for the evaluation of the original ACTION prototypes and subsequent service as illustrated in Table 1 which provides an overview of the original ACTION design process.
[Add Table 1 about here]
This design model formed the basis for our subsequent R&D work to extend the ACTION service. An overview of our R&D work and the outcomes in relation to the design model is outlined in Table 2 below.
[Add Table 2 about here]
The participatory design process is best seen as an iterative process in which the design work involving users and designers comprises cycles of development and evaluation are repeated several times before a satisfactory solution is reached. This may involve different research methods depending both on the context of the work and the particular product or service in question. In this regard we drew inspiration from the extensive work of Poulson and colleagues within the USERfit model [11]. As highlighted in Table 1, users were involved in all phases of the ACTION research project. In the EU and Swedish projects users included older people with chronic illnesses, mainly stroke and dementia who were living at home and their family carers (in total 144 families) together with health and social care practitioners and decision-makers in the respective care settings [1-2, 12-13].
In short, the design process began with identifying users’ needs. Based on their needs, a first version of the ACTION service was developed in collaboration with elders, family carers and professionals. After this initial phase, the service was further developed and tested, based on the users’ evaluations. A range of qualitative and quantitative research methods were employed in the design and evaluation of the ICT based support systemthat were able to engage as wide a range of stakeholders as possible. It is increasingly recognised that there needs to be more creative ways of engaging users who, due to cognitive and physical disabilities, may be unable to make their voices heard and/or participate in more traditional forms of research [14]. In this regard, the use of user groups have been developed, refined and successfully employed for the R & D work of all the ACTION multi-media programmes. In essence, the user group work consists of experienced care practitioners (working together with a researcher, EH) recruiting end users to the group who are deemed to be constructively critical. Namely, that they are comfortable in a group situation, are able to voice their opinions, share their experiences and listen to others and are creative problem solvers. The researcher summarises the empirical literature in the field and identifies key themes which are discussed with the experienced practitioners who facilitate the user group sessions. Together the researchers and practitioners formulate a series of open-ended questions for each theme which are discussed in a series of user group meetings which with participants’ permission are tape-recorded. The taped sessions are transcribed verbatim and this material is used by the practitioners to form the text for the programme. Wherever possible, the actual words of the participants are used to ensure the authenticity of the text and also enhance the accessibility of the programme for the end users. Each section of the prototype programme is duly fed back to the group and carefully reviewed by them. Photographs and video-clips to augment the text form the work of the user group once a draft manuscript for a section has been agreed on by all the participants. Written and verbal consent to use the material is secured prior to publishing a final version of the programme. During the user group work, principles of process consent are adhered to in which informed consent is informally and frequently negotiated with each of the participants to ensure their well-being [3].
Our user group process has been developed and refined over the years to create a range of informational and educational programmes which form an integral component of the ACTION service. Current externally funded projects include user group work to extend and adapt the ACTION service for young people (18-30 years old) with physical and cognitive difficulties and for older people with (acute) mental illness (anxiety and depression) and their carers, as outlined in Table 2.
Following this intensive R&D phase the entire ACTION service undergoes a period of field testing in a number of end-users’ homes which can range from a minimum of three months and optimally for at least a year and based on detailed evaluation data gained during this period, refinements are carried out as appropriate to further enhance the usability and acceptability of the service. For example, during the original EU project the field study data clearly revealed that families were disappointed that care professionals were rarely available due to existing work demands and/or the inaccessible placement of the ACTION equipment in the care setting. During a final focus group interview with the Swedish families, a carer gave his solution to this problem by suggesting that a dedicated call centre be established. His idea met with resounding approval from fellow participants. Thus, a dedicated call centre became an integral function of the Swedish ACTION service [8].