Developing Mobile ICT for Improved Health, Safety and Well-being Together with Elderly
People - Experiences From the MyHealth@Age (2008-2010) Project.
Melander Wikman A.
Department of Health Science Luleå University of TechnologySweden
Anita.melander-wikman@ltu.se
Bergvall-Kåreborn, B.
Social Informatics Luleå University of TechnologySweden Birgitta.bergvall-kareborn@ltu.se
Ghaye, T.
Reflective Learning-UK Gloucestershire, GL2 8HR, England Tony.ghaye@btinternet.comLundin-Olsson, L.
Community Medicine and Rehabilitation Umeå University
Sweden
Lillemor.lundin.olsson@physiother.umu.se
Abstract— The population is ageing in most countries. For elderly persons, safety is seen as important. The fear of falling is an experience that has been reported by numerous studies. Falls present the most common cause of injury in old age. A “health ageing paradigm” is a comprehensive approach to prevent injuries from falling. Home-based and mobile monitoring technology is considered to assist elderly people in terms of keeping healthy and staying at home longer. The MyHealth@Age Project (2008-2010) involves partners from Northern Ireland, Norway and Sweden. It aims to provide mobile ICT products and services to promote a process of healthy ageing. Thirteen elderly persons, 63-80 years of age, are the research persons in the Swedish part. The project-methodology is participatory and collaborative. It draws upon FormIT, Participatory and Appreciative Action & Reflection research (PAAR) and Living Lab approaches. Three areas were identified; safety, prescribed healthcare and social networking. Safety and freedom of mobility were the most important identified needs. Much of the learning was accumulated with regard to the processes of empowerment. It is important to co-construct empowering research and development methodologies, products and services, which promote social participation of elderly persons in order to keep health, safe and to promote well-being.
Keywords- elderly people; empowerment; m-Health; participatory design
I. INTRODUCTION
It is a well known fact that the population is ageing in most developed countries of the world. This development is often looked upon as a problem. Being elderly can give rise to stigmatization. Longevity could also be looked upon as a challenge for healthcare professionals, healthcare services and products. In general, most elderly people live on a limited budget while facing declining health and/or mobility over time.
Research shows that already today, many elderly persons stay healthy and live independently with a high quality of life [1]. Home-based and mobile monitoring technology is looked upon as a way to assist the elderly in terms of keeping healthy and staying at home longer [2]. It is often referred to as “ambient assisted living”. There are many mobile medical devices with built-in cellular connectivity in use and more are coming into the marketplace in the future. As the area of m-Health is growing, it is also important to be sure that products and services are developed with the users’ needs sharply in focus. The notion of empowerment is often mentioned as one aim when the process of e-Prevention is discussed. In the future, and with such positive intentions as empowerment and e-prevention in mind, it is important to develop workable health promoting strategies for self-determination, personal development and social participation of elderly persons in order to keep healthy and stay well [3]. Factors such as the quality and availability of social networks and social support from family and friends are not only important for good health, but also to feeling of safety. Especially for elderly persons, both physical and psycho-social safety is seen as extremely important. Safety can be viewed as an ongoing individual process that progresses with an increased awareness of risks [4]. Many elderly people feel alone and unsafe in their homes. If they are physically fragile, they may hesitate to walk outside their homes, being afraid that they may fall, incur health problems or are afraid due to the increased neighbourhood crimes in society [5, 6]. The anticipated fear of falling, along with the fear of a physical injury after falling,
losing independence and lying a long time without any help, are experiences that have been reported by numerous studies [7]. Fear of falling is a realistic, not simply a perceived fear. Falls present the most common cause of injury in old age and pose a serious threat to public health [8]. A “health ageing paradigm” is shown to have a comprehensive approach to prevent falls injury [9]. Research points out that routine social contact and physical activity, for example regular walks, that
improves physical health, emotional well-being and quality of life [10, 11]. Tailored advice on fall prevention, on special websites, is one example where ICT is used as a tool to promote health and prevent falls injury [12].
In the context of ageing well and mHealth, the MyHealth@Age project (MH@Age) is a three year (2008-2010) research and development initiative within the Northern Periphery Program with partners from Northern Ireland, Norway and Sweden. The overall objectives of MH@Age are to improve health, safety and well being for elderly people through the use of new products and services based on mobile technologies. In order to promote healthy ageing, support safety and well- being, MH@Age aims to provide mobile ICT products and services which help facilitate a more active role in healthcare rehabilitation, sustain autonomous living and enable elderly people to become fully active participants in healthcare and medical treatment programs, in co-operation with relevant organizations. Drawing on the research of Nolan et al. [13] and their work on ‘relationship-centred care’, three areas were identified for the project reported here. They are safety, prescribed healthcare, and social networking. The majority of IT-based health systems are directed at health organisations as users, rather than having a primary focus on the patients as users. Therefore the main focus of the MH@Age project is on developing ICTs for elderly persons in order to enable them to manage their own health. Given the centrality of the lived experiences elderly users and their needs, it was imperative that the development process in this project would allow for the elderly to take an active role in all appropriate aspects of it, should they wish to do so. This necessitated a close interaction between people with different competences and different interests. The aim of this paper is mainly to describe this research methodology.
II. RESEARCHDESIGN
The MH@Age project is an exemplar of participatory design project and is informed by two complementary research design processes; the living lab approach and FormIT. Living Labs are an emerging phenomenon and largely function as public-private partnerships whereby firms, academics, public sector authorities, and citizens work together for the creation, development and adoption of new services and technologies in multi-contextual real-life environments [14]. The purpose of a Living Lab is to create a shared arena in which digital services, processes, and new ways of working can be developed and tested with users, who can stimulate and challenge both processes and outcomes. Living Labs have emerged in different areas as health services, rural and regional development and ICT development. Living Labs are defined in the literature as an environment [15, 16], as a methodology [17], and as a system [18]. In this paper we present MH@Age as an exemplar of a Living Lab project and link it to the broader field of participatory design (PD). A shared understanding is that users should not be viewed merely as passive information providers.
FormIT is inspired by three theoretical streams: soft systems thinking (SST), appreciative inquiry (AI) and need finding (NF). From the first stream, SST [19], the assumption is that changes can occur only through changes in mental models when utilised. This implies that we need to understand both our own as well as other stakeholders’ worldviews and we need to be clear about our interpretations and the base on which they are made. The second stream, AI [20], has encouraged us to start the development cycle by identifying the different stakeholders’ dreams and visions of how IT can improve and support the lives of people. This includes a focus on opportunities, related to specific trends, contexts, or user groups, and on the positive and life-generating experiences of people [21, 22].
III. PROJECTMETHODOLOGY
Participatory and Appreciative Action & Reflection research (PAAR) is the umbrella methodology for the MH@Age project. There has been a creative fusion between this, Living Lab and FormIT. Participatory and Appreciative Action & Reflection research (PAAR) can be regarded as a kind of 3rd generation action research. It builds on both action research (AR) with its individualistic and problem-solving focus and participatory action research (PAR) where the focus is more upon the ‘we’ rather than the individual, and upon the process of empowerment for example. Arguably PAAR can be said to be even more appropriate to research in health, social care and rehabilitation [23, 24] because of its explicit intention to include an appreciative understanding of user needs. In our conception of PAAR there is a focus on ‘we’ and on the idea of mutual understanding and authentic relationships. This requires users of PAAR to draw upon their social intelligence. Central to this are the processes of collaborative working and appreciative knowledge sharing [25]. When the participating elderly persons are engaged in giving their views upon how the design should be, to fulfil their needs and are active shapers of knowledge that is used by the technicians, this is in line with the ideas of PAAR [26].
Instead of only looking for what problems are to be solved, fixed and removed, the PAAR methodology focuses on accomplishments, strengths, successes and their root causes, so that success can be better understood and amplified. PAAR is about what we want more of, not less of. So in MH@Age we focused on what the elderly persons and health care staff wanted more of. On what strengths and successes we could build. The improvements here required us to have an appreciation of aspects of “the positive present” [27]. It is the use of appreciative intelligence that distinguishes PAAR from PAR, meaning that is about our ability to reframe a given situation so that we can ‘see’ what the positive parts of the present actually are and to understand how they have come to be that way. This is crucial. If we fail to understand the root causes of success, we may never be able to amplify of repeat success in the future [24]. So the essence of the PAAR process
is about recognising the positive possibilities embedded in the current situation and taking the necessary action to positively engage with others, so that valued outcomes unfold from the generative aspects of the current situation [24]. PAAR uses the power of the positive question when addressing service and systems improvement issues. For example: What are our successes and how can we amplify them to build and sustain a better future from valued aspects of the positive present?
With regard to the creative fusion mentioned above, FormIT encourages a focus on possibilities and strengths in the situation under study. This is fundamentally different from traditional problem solving approaches. In our view, identifying opportunities is the basis for appreciating needs, since needs are opportunities waiting to be exploited [22, 28].
IV. RESEARCHPARTICIPANTS
The participants in the study in Sweden consist of the following people. At the start of the project there was (1) the project leader; (2) health care professionals; (3) designers and developers from industry; (4) researchers from the university; and (5) three user groups. Specifically these were (i) the reference group (three people), (ii) the elderly organisations (five people), and (iii) the representative group (6-7 people). The reason for involving three types of user groups was that we wanted the user groups to represent people with different experiences and varying levels of expertise.
The elderly advisory groupThis group had been involved in previous projects and participated in writing the application.
The elderly reference groupThis involved persons formally representing elderly organisations, usually elderly people themselves with a good understanding of elderly issues in general.
The elderly representative groupThese users were recruited to broadly represent the target group of the proposed system and they participated from the phase concerned with generating needs.
This resulted in an elderly user group consisting of 13 people with an age range between 55-85 years and a mix of male and female participants. There is a clear over-representation of people living with a partner. All of the participants are living within 0-4.4 km to the city centre. Their ICT-proficiency and familiarity with mobile/PCs are mixed.
Some are daily users of both the internet and mobile phones, while others never use the internet and only use their mobile phone occasionally. All of the participants are in reasonably good health even though a few of them have health conditions that clearly constrain their mobility independence. Common conditions are high blood pressure, diabetes, osteoporosis, heart problems, recovering from a stroke, and respiratory disease. The recruitment of “The elderly representative group” was carried out by the Swedish health care organisation
participating in the study. They facilitated the project requirement to have a medical link between the majority of the participants and the health care staff in order for the prescribed health care functions to be used in a realistic way.
V. RESEARCHRESULTS
The users have contributed extensively to the design process of the MH@Age project. They have been asked to make comments on the performance, applicability and usefulness of the MH@Age services and products. The first design cycle involved a needs assessment among elderly people at the three test sites in Northern Ireland, Norway and Sweden. The second cycle comprised the design of concepts and prototypes, while the third cycle focused on the assessment of the system-in-use. A Human Experience Analysis elicited user needs and desires at an early project stage. The Human Experience Analysis is built on focus group interviews with selected participants, cultural probe activities, practical workshops and multi-stakeholder meetings. In addition, country-specific contextual information was collected.After exploring the generated needs, as well as identified strengths and dreams, the basis for the vision of the services took form. Safety and freedom of mobility was the most important need. The first MH@Age service prototype was a mobile phone with three integrated functionalities (1) a mobile safety alarm with a GPS locator system and an integrated fall sensor, (2) a prescribed healthcare functionality, intended to give the elderly end-user better information about their health and motivate the end-user to live a healthy life with good diet and exercises, and (3) a functionality to stimulate social interaction and social networking. The elderly participants find the prescribed health care functionality as motivational particularly as they get information about the way ‘being active’, like regular walking, relates to their health condition. They also think they have learned about their own health by measuring their blood-pressure and using step-counters. The interaction with the physician and the physiotherapist was experienced as easy and they felt comfortable with giving them access to the data the functionality generated. This precipitated helpful conversations between users and healthcare professionals about health issues.
VI. DISCUSSION
The growing ubiquity of mobile phones is a central element in the promise of mobile technologies for health. As the area of m-Health is growing, it is important to be sure that products and services are developed with the users needs in focus. Mobile technology can play a central role in wellness and safety promotion among elderly people [29]. When the focus is to design and develop innovative services on the basis of the generated needs and requirements from earlier project phases, it is critical to have the elderly persons involved, in a sustained and non-tokenistic way. The generated needs, as well as identified strengths and dreams, form the basis for the
vision of the service/s and products. In MH@Age, safety was expressed as important and the ideas of the elderly were listened to and acted upon. The services and products needed to be detailed enough for the users to understand the basic objective and functions of the future solution.
The services and products described in this paper are concrete outcomes of this project. The project’s underlying participatory design methodology has enabled those involved to focus on possibilities and strengths in the situation under study. This is fundamentally different from more traditional problem solving and deficit-based approaches to improving health and well-being. The project’s underlying values of authentic participation, an appreciation of diverse and multiple competences and interests and the centrality of the needs of the elderly to be served, has given rise to a number practical and desired outcomes. The Living Labs approach to technological innovations, in the field of ICT, requires the creation of empowering spaces for all project stakeholders for collaborative work and for co-design. Relatively less tangible is the sense of empowerment conveyed through the elderly persons participation is each cycle of the project. This means a heightened sense of how the ethical development of appropriate mobile technologies can serve to reframe what it means to age-well and to take on a personal responsibility for the “care of oneself”. Through their participation in the project, the elderly have been able to work towards redefining themselves as individuals, responsible for their own well-being and self-care, with the aid of particular mobile technologies for health. The complexity and wealth of lived experiences that exemplify the health and lives of older adults, call for research approaches that fully capture the richness and complexity of these experiences. We feel the values, design and implementation of MH@Age exemplifies an attempt to take the needs of elderly people seriously and to use all available skills and technology to transform these needs into services and products that have the promise to enable the elderly to live enjoyable and fulfilling later lives. The growing ubiquity of mobile phones, also used by elderly people, is a central element in the promise of using mobile technologies for improving health and well-being. As the area of m-Health is growing, the MH@Age project is able to make an important contribution to our understanding of ways to ensure that the needs of elderly people are always kept front and central in the design and development process of services and products that support their well-being.
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