Matching Intentions with Experience: A human-centred service design approach to shared decision making

Abstract

Demographic change towards an older population and increasing prevalence of life-style related diseases lead to changing needs for medical care. Simultaneously, medical practice is moving away from paternalistic decision making. Patients and their next-of-kin are increasingly invited to become active agents in treatment decisions. This practice is called Shared Decision Making (SDM). Chronic Kidney Failure (CKF) is used as an example to investigate the implementation of SDM practice in chronic care. SDM is being promoted among others in Norway (Leivestad, 2013) and the United States. However, a systematic review that covered studies from various countries, conveyed that patients with CKF and their next-of-kin have frequently reported a lack of choice. Moreover, others have claimed that best practices on effective approaches to information dissemination and knowledge acquisition for patients with CKF are lacking. Furthermore, regarding SDM in general, there is a need to investigate how patients and their next-of-kin are best supported in making a choice, as only providing information is not enough. The aim of this thesis is to reach a better understanding of aspects that can support the (re)design of pre-treatment education and decision-support programs for chronic patients and their next-of-kin. This is done by investigating existing interventions that provide pretreatment education and/or decision support to patients and their next-of-kin from a humancentred design perspective. Emphasis is placed on the situation in Norway. Sub-goals of the thesis are to: - Provide insight into information needs of adults with CKF pre-treatment start and their motivations behind treatment preferences. - Establish an overview of pre-treatment education programs for adults with CKF from an international perspective. - Contribute to knowledge on how to apply participatory design methods in hospital care contexts. - Investigate the potential introduction of “serious games” as a supplementary strategy to support SDM. The thesis builds on design theory, constructivist learning theory, and insights from studies that were conducted for this thesis. The thesis contributes to the field of Design for Health, which embraces all kinds of design practice and design research that has the intention to contribute to health and wellbeing. Human-centred service design stands at the core of this thesis. Service design has close links to other design disciplines, such as product, interaction and graphic design. The thesis is therefore relevant for all kinds of design practitioners and design researchers who work with health. The survey, opinion, and empirical research contributions that this thesis provides are specifically relevant for designers whose work concerns patient education programs. The thesis provides insights into the information needs of patients’ pre-treatment choice. This knowledge aids designers in determining what information to include in a holistic service offer and in specific interventions of such a service, such as pre-treatment education programs. Furthermore, insights regarding the barriers to SDM that patients and their next-of-kin have reported are provided. Designers can use this knowledge to develop solutions that meet these barriers. Practical examples of how education services may be organized are provided additionally. Designers can use this knowledge when (re)designing akin service offers. However, more empiric research that allows cross-case comparison is needed to clarify which aspects of contemporary programs support or constrain SDM. As programs vary greatly in setup, and are evaluated through various measure, evidence for the effectiveness of program components is lacking. Designers should critically reflect upon using them. The findings of the thesis indicate that designers should carefully consider the timing of information and how information is presented and formulated, accounting for people with various learning styles and knowledge levels. Designers are also recommended to better account for universal design guidelines to support people with cognitive disabilities. The thesis presents a theoretical argument for the use of serious games as a supplement to face-to-face and website-based programs. This argument is relevant because, serious games might contribute to stimulating reflection and discussions concerning treatment alternatives. Designers are recommended to apply a service design approach and to use education and decision support programs as part of a more extensive service offer. Medical practitioners and designers should be aware that gaps may occur between intentions of service providers, expectations of participants and experiences in practice. Designers can use the knowledge that this thesis contributes with when (re)designing patient education programs; It can help them develop propositions that bridge these gaps. Qualitative evaluations can help uncover constrains. Designers can use such insights when redesigning patient education programs; It can help them develop propositions that overcome these constrains. Co-design sessions that facilitate collaboration across medical disciplines can benefit the (re)design of healthcare services. The development of evaluation schemes that patients fill out can support medical practitioners to continue the introduction of iterations, without the further involvement of designers. The methodological contributions inform human-centred design practice and research in healthcare settings. It presents approaches that are relevant for designers whose work concerns service design or participant involvement in healthcare settings. The thesis specifically contributes knowledge regarding the organization of co-design events in this context. This thesis adds to the discussion on participation in design, by proposing that in healthcare, and in other settings that involve long-lasting participant relationships that build on trust (e.g. schools, public welfare agencies), a specific ethical consideration has to be made; Designers should reflect upon the possible long-term effects of participation on relationships between participants after the workshop. This is important as trust is established over time through successive interactions. Concerning participant selection, designers are additionally recommended to reflect upon the vulnerability of potential participants and the costs versus benefits of their participation. Furthermore, the thesis illustrates that within a healthcare setting, the inclusion of external experts as workshop participants can be valuable for idea generation. Designers are recommended to consider both the inclusion of practitioners that work with similar healthcare services and the inclusion of designers as participants. Both parties bring in new perspectives, and are able to question current practices. Additionally, the thesis demonstrates the value of involving practitioners that are familiar with the healthcare context to facilitate the workshop. Although they are not designers, they have a thorough understanding of the context and the problems that needs to be addressed. Organizing a trial workshop can help such facilitators gain confidence in the application of design tools. Furthermore, designers are recommended to anticipate if specific aspects of healthcare contexts (hierarchy, working in disciplines and unfamiliarity with co-creative tools) may have an effect during the workshop, and to adopt the assignments accordingly. Pre-treatment education and decision support programs for patients and their next-of-kin are important elements in chronic care services. Moreover, they are important supports for the SDM process. The knowledge that this thesis generates, supports designers in the (re)design of such programs to better meet the information and support needs of patients and their next-of kin.