Formulating a Design Process for Medicine 2.0: The Case of Kanker.nl
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Abstract
Background
Medicine 2.0 presents opportunities to develop new patient platforms, but existing projects have had mixed success. A key design problem concerns the tension between developing designs to fit user needs versus designs that anticipate needs unknown to users. How do we design Medicine 2.0 applications that are innovative and support novel modes of patient participation, while still addressing user needs? As a team we are drawn to the ideas of User Centered Design (UCD), where developers build to the needs and capacities of users, still we see some limitations. UCD may increase usability and accessibility, but the process has difficulty generating designs beyond the user experiences, especially in social media platforms, where the tool gains increasing value with activity and time and users cannot anticipate final products. To address this concern we propose a hybrid design process. Based on expertise, lessons learned from other projects and available resources, we plan to build a platform that layers patient knowledge and insight on top of the expert-generated clinical information. The result will be a single system to access, discuss, collect, add to, and share information about cancer and quality of life. But within that general concept, we propose a design process that includes our users within each phase. The program, Kanker.nl is a collaboration between the umbrella organization for 25 cancer patient organizations (NFK), comprehensive cancer centers in the Netherlands that collect outcome data on patients (CCC), and the main Dutch cancer charity (KWF Dutch Cancer Society). This collaboration is unique in that we have access to patient information, outcome data, patients themselves and an interdisciplinary team. The goal for this phase of the project is to design a platform that is innovative and capitalizes on our unique resources and is designed to be useful and accepted by people with cancer, family members and patient organizations. To do so, we aim to develop a design process that integrates UCD into a plan for innovation.
Method
To understand our users, test assumptions, ensure usability and engage our future users we are conducting two types of research. In the first, using interviews and surveys, we will assess current media literacy and informational and social support needs. In the second, we test prototypes with end users. The platform begins with a proof of concept and then expands to include more advanced functionality. To evaluate the success of our design process, we will follow up on our design work with survey-based evaluation studies. We will measure the usability of the system, the perceived level of innovation, and level of user acceptance as compared to existing websites for cancer patients in the Netherlands.
Results
We are designing for participation in healthcare but recognize that the design process cannot be solely participatory. Therefore, we propose a hybrid design approach. Our design research is ongoing. Individuals and patient organizations have been receptive and enthusiastic about contributing their own voice to the research. Building a new media platform with multiple partners motivates changes in the culture of a variety of organizations. Early results indicate that involving user organizations not only ensures future user acceptance, it heightens interest and support for the project and comfort with implementing these changes. Organizations are interested in hosting surveys and supplying participants for research exercises. Qualitative and quantitative findings from our evaluation study will be presented.
Medicine 2.0 presents opportunities to develop new patient platforms, but existing projects have had mixed success. A key design problem concerns the tension between developing designs to fit user needs versus designs that anticipate needs unknown to users. How do we design Medicine 2.0 applications that are innovative and support novel modes of patient participation, while still addressing user needs? As a team we are drawn to the ideas of User Centered Design (UCD), where developers build to the needs and capacities of users, still we see some limitations. UCD may increase usability and accessibility, but the process has difficulty generating designs beyond the user experiences, especially in social media platforms, where the tool gains increasing value with activity and time and users cannot anticipate final products. To address this concern we propose a hybrid design process. Based on expertise, lessons learned from other projects and available resources, we plan to build a platform that layers patient knowledge and insight on top of the expert-generated clinical information. The result will be a single system to access, discuss, collect, add to, and share information about cancer and quality of life. But within that general concept, we propose a design process that includes our users within each phase. The program, Kanker.nl is a collaboration between the umbrella organization for 25 cancer patient organizations (NFK), comprehensive cancer centers in the Netherlands that collect outcome data on patients (CCC), and the main Dutch cancer charity (KWF Dutch Cancer Society). This collaboration is unique in that we have access to patient information, outcome data, patients themselves and an interdisciplinary team. The goal for this phase of the project is to design a platform that is innovative and capitalizes on our unique resources and is designed to be useful and accepted by people with cancer, family members and patient organizations. To do so, we aim to develop a design process that integrates UCD into a plan for innovation.
Method
To understand our users, test assumptions, ensure usability and engage our future users we are conducting two types of research. In the first, using interviews and surveys, we will assess current media literacy and informational and social support needs. In the second, we test prototypes with end users. The platform begins with a proof of concept and then expands to include more advanced functionality. To evaluate the success of our design process, we will follow up on our design work with survey-based evaluation studies. We will measure the usability of the system, the perceived level of innovation, and level of user acceptance as compared to existing websites for cancer patients in the Netherlands.
Results
We are designing for participation in healthcare but recognize that the design process cannot be solely participatory. Therefore, we propose a hybrid design approach. Our design research is ongoing. Individuals and patient organizations have been receptive and enthusiastic about contributing their own voice to the research. Building a new media platform with multiple partners motivates changes in the culture of a variety of organizations. Early results indicate that involving user organizations not only ensures future user acceptance, it heightens interest and support for the project and comfort with implementing these changes. Organizations are interested in hosting surveys and supplying participants for research exercises. Qualitative and quantitative findings from our evaluation study will be presented.
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