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Co-design, Social
selectivity 
Cost-effectiveness

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The complex and costly care needs of the large and growing population of older persons with long-term conditions is a critical challenge in health care worldwide. To meet this challenge, health care organizations, researches funding agencies, as well as enterprises have invested numerous resources in the development of person-centered e-health tools using Information and Communications Technology (ICT).

In many countries there are high expectations on a governmental level that this development, in which people take more responsibility for their self-care by using ICT support, will simplify and increase access to care and reduce health care costs.

The European Commission’s investments in research on ICT will increase by 46% under Horizon 2020, compared to FP7. Positive effects of ICT have been found in groups in need for a large degree of self-care such as patients with heart failure or asthma. Projects involving change for health care organizations geared towards more focus on self-care and improved patient-provider collaboration also show positive results. However, despite the potential of ICT for supporting self-care, a major challenge is that it has not been widely used. There are several gaps in the evidence that may explain why ICT tools seldom are implemented in clinical practice and every-day life of people with long-term conditions:

  • The development of ICT tools has often not been user-driven involving references and experiences of older persons with long-term illness, their carers and health care professionals
  • The learning process of how older people can learn to perform self-care with support from ICT has not been fully explored.
  • Social selectivity and inequality issues have very seldom been addressed in previous research The purpose of this program is therefore to build evidence-based knowledge and practice about innovative person-centered ICT tools for support to older people with long-term conditions and their family carers in order to manage self-care independently and stay healthy, independent and socially active for as long as possible, delay/avoid institutionalization and improve quality of life.

The program has four overall aims:

  1. To explore how older people with long-term illness, family carers, health care professionals, patient/carers organizations and small and medium enterprises (SMEs) can be involved in the design, evaluation and implementation of different ICT tools in order to support self-care.
  2. To address presuppositions and consequences of social selectivity in the development and evaluation of ICT tools for self-care.
  3. To evaluate the effectiveness of ICT tools to support self-care in older people with long-term conditions and their family carers through intervention studies.
  4. To explore how to facilitate the implementation of the ICT tools in clinical practice when found to improve health, activity, quality of life and/or cost-effectiveness of care.

Our goal for the coming four-year period is to develop a research program that will build evidence- based knowledge and practice of the use of ICT tools in order to achieve more effective self-care. The program has a person-centered approach applying a participatory framework involving users (older people with long-term conditions, their family carers and health care professionals) as co-designers in the development and evaluation phases of ICT tools. Patient and carer organizations as well as SMEs are also collaborators in the program. The co-design approach will be tested in four interdisciplinary intervention studies aimed at evaluating different ICT tools for supporting self-care in older persons with different types of long-term conditions. The ICT solutions in the projects target symptom monitoring, memory reminders, motivation to physical activity in patients, and psycho-educational support to family carers. Both qualitative and mixed methods will be used and all projects will include a Randomised Controlled Trial (RCT) design. Transverse studies on co-design, social selectivity and cost-effectiveness will be conducted throughout all projects. Presuppositions and social selectivity will be studied in order to explore inequality issues in the evaluation of ICT-based measures, tools or services. Social selectivity has bearing for the generalizability, dissemination and implementation of the research findings. Cost-effectiveness will include Quality of Life Adjusted Years – QALYs, different patient reported outcome measures as well as costs. The figure on top of this Internet page shows of the elements in the program. 

PUBLICATIONS

ABSTRACTS AND PRESENTATIONS

MEDIA PRESENTATIONS


The transverse studies on co-design, social selectivity and cost-effectiveness

Progress - Transversal evaluations

Publication - Transversal evaluations

Contact - Transversal evaluation

 

Participatory framework for co-designing ICT support for self-care

ICT is not just about providing a tool for people with long-term conditions and their carers. They should be involved and make demands in the development process (Gibbons et al. 2011). Development of ICT tools is often associated with person-centered care (Ekman et al. 2011), and the most recognised method developed in this area is "the user-centred design approach" (Righi & James, 2007). This method is based on the overall experience of the person who will use the product. Feedback from the user determines the requirements, objectives and what will be developed and tested iteratively during the process. Such an approach ensures that the technology meets the purpose of the environment where it will be used.

Aims: To evaluate a co-design approach that involves people with long-term conditions and their family carers, health care professionals and SMEs in the planning, testing and evaluation of new ICT solutions to support self-care.
Research

Questions:

  • What type of interactive support between older persons with long-term illness, family carers and health care are co-designed to stimulate active self-care in older people? 

  • How should health care be re-organised to stimulate and support the co-designed solutions of ICT? 

  • How do older people and their carers participate in co-design, and how do it effect design and use 
of ICT? 


Methods

A co-design methodology where research and ICT development is conducted in the same process, but with different starting points, will be implemented in all projects in the programme (see section 3). Co-design (Sanders and Stappers 2008) is about developing products or services in a collective creative process. We will do this in two different empirical studies. Firstly, by following a co- design in one project from start to end evaluating the process, possibilities and difficulties the project encounter. Secondly, by retrospectively evaluating the co-design in all projects. Additionally we will evaluate similar co-design project and ICT-solutions that have been successfully implemented internationally.

Impact

This project will bring evidence on how to involve participants in the co-design approach for developing and testing ICT tools. The ICT solutions that are designed are expected to be used and further developed. Sustainable business models for SMEs will be developed, both on how SMES can be involved and how to make long-term business value. 


What is new

Taking a broad prespective on co-design, involving older people with long-term condition, family carers, health organisations and SMEs. Testing different approches and evaluate them with an interdisciplinary, international approach.

Transverse Evaluation of Social Selectivity for ICT-based tools for self-care (TESS)

Short project description

What are the consequences of involving small and highly selected groups of older people and family carers for evaluating ICT-based interventions intended to support self-care needs of larger and more heterogeneous groups of people? What might happen when those interventions are implemented? Will they be suitable and accessible to everybody in need of them?

The aim of the TESS study within the ICT4Self-care research program is to study the impact of the selective involvement (i.e. individuals are deemed not suitable to take part in the study because of project decisions, eligible study criteria and staff preferences) and selective participation (i.e. individuals decide whether or not they want to take part in the study) in the development and evaluation phases of ICT-based interventions for self-care on social exclusion and inequality. TESS is conducted to understand difficulties and flaws of the conventional approaches used for developing and evaluating ICT-based interventions for self-care. Study designs, like randomised controlled trials (RCT), dominate intervention studies as they are understood as being accurate and objective tools, not affected by expert knowledge. However, they tend, intentionally or unintentionally, to exclude or underrepresent groups of individuals to whom results will nevertheless be applied. These groups of participants can be substantially different from the study population or the one the intervention focuses on. Furthermore, intervention effects may be different in these groups than in those that dominate the samples. As a consequence, the intervention effects may be different compared to what would be found in the ‘real’ world. Thus, the developed and tested interventions might turn out to be inadequate and unsuitable to those people that were underrepresented.

Therefore, it becomes relevant to identify who participates in these studies and who will benefit from the introduction of such innovative services and interventions that are based on possibly over-generalised results – and who will not. This study hypothesises that study participation and intervention benefits correspond, so that results must be adjusted. This issue is of importance for the impact of healthcare interventions on the structures of social inequality. It needs to be analysed against the backdrop of the comprehensive overall gains and the potentials unleashed by adequate ICT-based measures and services. Targeting this will add value to the further developments by securing more equal access to the advantages and more efficient use of the resources invested.

Methods

The TESS study examines the selection processes and the selective participations in the four ICT-based interventions tested within the ICT4Self-Care research programme. Data is collected among the RCT studies’ entire target groups through questionnaire studies and by accessing available registry data.

Impact

The results of TESS will, on the one hand, directly influence the corresponding programme projects by feeding back the results and showing how the results would have been if a broader group from the target population had tested the interventions. On the other hand, it will provide new knowledge about the interconnection between ICT-based interventions in the provision of healthcare services in the ageing Swedish population and the consideration of social inclusion and equality as a precondition of social sustainability in a long-term perspective. 


 

What is new

The TESS study goes beyond the effectiveness of the interventions tested for investigating how to promote a wider access to and greater benefit from the interventions to all older people and family carers targeted.

Transverse evaluation of evaluation of cost-effectiveness of ICT tools


Health economic analysis will be performed using validated questionnaires for the outcome measures of the interventions including: physical activity, general postoperative recovery, self-reported level of safety and contacts with family carers during the postoperative period. Use of resources (costs) include patient time and expenses (e.g. time, data traffic), time for health care staff related to the intervention (e.g. time, actions of care, wii games, remind me) and other health care consumption. 


Cost-effectiveness analysis of ICT applications in health care are scarce advocating the inclusion of health economic analyses in interventional studies (Grustam et al. 2014). There are a range of costs and benefits involved in using ICT for different purposes. The costs and benefits are often realised with different time horizon. Short-term costs for the intervention may return as long-term benefits. There are some common costs including making the technology available and time for patients, family carers and health care professional. Major cost savings are expected if the technology decreases health care consumption and the burden on family carers. However, user satisfaction and health related quality of life for patients and family carers also needs to be taken into consideration.

Progress - Interactive website

Publication - Interactive website

Contact - Interactive website

In Sweden, 1.3 million inhabitants support or care for a relative or significant other on a regular basis. One in four older people (65+) and a third of adults in paid work (45-64 years) are family carers providing practical help with activities of daily living, supervision, social stimulation and company, help with contacting authorities, financial support and assistance, and personal care. ‘Ageing in place’ policies and targeting of home help services for those older people most in need has meant that family carers increasingly bear the brunt of care. It is recognized that as caring responsibilities increase in intensity there is a corresponding negative effect on family carers’ mental and physical health. There is a growing awareness of the need to provide timely support to family carers and to recognize and actively involve them with the patient as partners and ‘co-experts’ in the care process. However, many existing carer support services lack evidence as to their efficacy and there are calls for more individualized, flexible services that better meet the needs of family carers at different points in time. The use of ICT to provide more responsive support for family carers of older people is increasingly being recognised as a potential solution with the ultimate goal of enabling ‘ageing in place’ (Magnusson & Hanson, 2012).

Within the current INNOVAGE project (2013-2015), a general web platform for carers of older people in Europe is being developed led by the Italian Ageing Centre in collaboration with Eurocarers. The patform will be piloted tested in Sweden (by the Swedish Family Care Competence Centre- SFCCC), Germany and Italy. It is intended that the prototype will then be culturally adapted and pilot tested in an additional 24 member states. Following completion of the project, responsibility for updating and running the web platform will rest with national members of Eurocarers. In Sweden, the SFCCC will be responsible for updating national content and running the web platform for family carers in Sweden. Based on our previous research in the field, we know that family carers often ask for specific information tailored to their own caregiving situation. Thus, building on the INNOVAGE general web platform we will develop disease-specific modules together with family carers, older people with chronic HF and with representatives from the patient organisation.

Aim: To ultimately enable the older person with HF to live at home for longer with the support of their family carers and in partnership with health and social care professionals.

Method: The project will be carried out in two stages. Stage I will consist of development and feasibility testing followed by Stage II: a RCT. The first stage will occur during the first three years of the project and involve five phases: an exploration of users’ needs, development, verification, field testing, and refinement. A co-design methodology will be adopted, building on the ACTION design model in which family carers and older people together with researchers are involved in the entire design process. During the second stage, an RCT will be carried out in which family carers are randomly allocated to the developed tailored website support; the Innovage website support and standard support services (control).

Impact: Given the vital role played by family carers in the support of frail older relatives living at home, it is essential that there are effective and responsive support services available to meet their needs for information, education and support to enable those carers who wish to continue caring to do so.
In the RCT study, we will study if there is a positive impact on the following variables within the tailored website support compared to the general innovage web-support and the control group: preparedness for caregiving, components of the difficulties, satisfactions and management strategies, perceived social support and needs assessor known to the family carers.

What is new: This project marks a paradigm shift in that family carers are seen as active partners in care and the intervention is intended to help them become co-experts with regard to their caring situation together with the older person and in collaboration with health and social care professionals