ict4selfcare - Transversal evaluations

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

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.