Integrating perspectives of patients, healthcare professionals, system developers and academics in the co-design of a digital information tool

Abstract

Background Patients diagnosed with cancer who are due to commence radiotherapy, often, despite the provision of a considerable amount of information, report a range of unmet information needs about the treatment process. Factors such as inadequate provision of information, or the stressful situation of having to deal with information about unfamiliar things, may influence the patient’s ability to comprehend the information. There is a need to further advance the format in which such information is presented. The composition of information should be tailored according to the patient’s individual needs and style of learning. Method and findings The PD methodology is frequently used when a technology designed artefact is the desired result of the process. This research is descriptive of its kind and provides a transparent description of the co-design process used to develop an innovative digital information tool employing PD methodology where several stakeholders participated as co-designers. Involving different stakeholders in the process in line with recommended PD activities enabled us to develop a digital information tool that has the potential to be relevant and user-friendly for the ultimate consumer. Conclusions Facilitating collaboration, structured PD activities can help researchers, healthcare professionals and patients to co-design patient information that meets the end users’ needs. Furthermore, it can enhance the rigor of the process, ensure the relevance of the information, and finally have a potential to employ a positive effect on the reach of the related digital information tool.

Beyond effectiveness evaluation: Contributing to the discussion on complexity of digital health interventions with examples from cancer care

“…Further, it is complemented with information in the form of Q&As, films and weblinks. Its development was conducted in co-design, using participatory design methodology, and the tool is currently in the final stages of evaluation (14,15). Simultaneously, the development process is being retrospectively assessed using the NASSS-CAT long version.…”

Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations

“…To enable population-wide surveillance of the incidence and prevalence of people with advanced or metastatic cancer (de novo metastatic or recurrent disease progression), cancer registries must be established or expanded [ 1 , 89 – 92 ]. Active involvement of people affected by advanced cancer in the co-design of research is critical to better meet the needs of end-users and enhance the rigor, relevance, reach, and impact of survivorship research [ 5 – 8 , 23 , 24 , 28 , 29 , 93 , 94 ]. To enhance accessibility of high-quality survivorship care for this population, research trials should broaden eligibility criteria to explicitly include people affected by advanced or metastatic cancer in clinical trial design and proposed survivorship care research questions, rather than focusing solely on earlier stage disease post-curative-intent treatment; address barriers to enrolment and participation at all system levels; and consider the potential use of patient navigators or other facilitators needed to promote knowledge of, entry into, and transition out of cancer clinical trials as appropriate [ 7 , 28 , 29 , 67 , 94 ].…”

Co-designing Healthy Living after Cancer Online: an online nutrition, physical activity, and psychosocial intervention for post-treatment cancer survivors

“…This diversification of feedback ensured that suggested behaviour changes are accessible to all cancer survivors (e.g., focusing on walking instead of weighted exercises) and that it included information about the potential cancer-and treatment-related side effects that can complicate the behaviour change process. The benefit of including multiple stakeholder groups, particularly healthcare professionals and representatives from support organisations, has been noted in previous digital health intervention research [37].…”