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Co-creating inspiring New Experiences

Buy The Intercessor paperback or ebook from Amazon, Barnes & Noble, Bookshop.org, or Ingram! NOTE: This post is to introduce you to the 69th episode of François Matarasso's and my monthly podcast, "A ...

Heli Daruwala and Samara Roy put development at the center of a tint campaign. Read the product format and reported design choices. #SAMMMMpHLUSH #HeliDaruwala #SamaraRoy #cheekandliptint

Firefighters Ask Science Answers Faster

On 19 September 2026, the IDEAL project took an important step forward in Thessaloniki, where IASIS NGO organised a hands-on piloting session during the Connected We Stand Festival.The activity brough...

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How to prepare, support and work with student co-creators so that diverse perspectives can genuinely shape change

Si le nombre de personnes autistes augmente, c’est d’abord parce qu’on repère mieux ce trouble du développement. Et parce que les critères du diagnostic ont été élargis.

Background: Survivors of breast #Cancer frequently experience anxiety, stress, and depression during the follow-up and survivorship phases, when access to psychosocial support is often limited. Although psychological interventions have demonstrated effectiveness, their implementation in routine clinical practice remains challenging. #Digital mental health interventions offer a promising alternative. However, many existing solutions show limited personalization, engagement, and long-term adherence, partly due to insufficient involvement of end users in their design. Objective: This #Study aims to develop and pilot-test a cocreated #Digital psychological intervention (SerenApp) aimed at improving psychological well-being among women during breast #Cancer follow-up and to evaluate its feasibility, usability, and preliminary effectiveness. Methods: This mixed methods #Study adopts a participatory cocreation approach structured into 3 phases. Phase 1 focuses on identifying unmet psychosocial needs and co-designing the #App’s content and functionalities through workshops involving patients and health care professionals, applying design thinking principles and the Cocre-Ar-E (cocreate, assemble, and evaluate) framework. Phase 2 involves the technical development of the intervention using an agile scrum framework methodology, followed by usability and technical validation (alpha testing). Phase 3 consists of a pilot #RCT #ClinicalTrial (n=90; 45 participants in each of the intervention and control groups) conducted in Andalusia and the Canary Islands, Spain. Outcomes include acceptability, usability, adherence, psychological well-being, and cost-effectiveness. Validated instruments include the #Cancer Patients’ Stress Coping Questionnaire (CAEPO), Patient Health Questionnaire-9 (PHQ-9), Hospital Anxiety and Depression Scale (HADS), EQ-5D-5L, System Usability Scale (SUS), Client Satisfaction Questionnaire-8 (CSQ-8), Client Service Receipt Inventory (CSRI), and Mobile #App Rating Scale (MARS). Quantitative analyses will include ANOVA, multilevel regression models, and cost-effectiveness analyses (incremental cost-effectiveness ratio and incremental cost-utility ratio), whereas qualitative data will be analyzed using reflexive thematic analysis supported by NVivo software. Results: Funding was awarded by the Instituto de Salud Carlos III (PI24/01193) in 2024. The SerenApp project began in January 2025 with an exploratory phase and a comprehensive literature review. The cocreation phase was conducted between September 2025 and May 2026, involving 24 breast #Cancer survivors and 15 multidisciplinary health care professionals. Development and alpha testing are ongoing, with recruitment expected to begin in 2027. Data analysis has not yet started, and the main #Study findings are expected to be published in 2028. Conclusions: This #Protocol describes the development and pilot evaluation of SerenApp. By integrating the perspectives of survivors, health care professionals, #Researchers, and technology developers, the #Study seeks to develop an intervention that is relevant, acceptable, and feasible within real-world health care settings. The findings generated through the cocreation process, usability evaluation, and pilot #RCT #ClinicalTrial are expected to contribute to the evidence base on participatory approaches in #Digital mental health and inform the future refinement, implementation, and large-scale evaluation of SerenApp. Clinical Trial: ClinicalTrials.gov NCT07169539; https://clinicaltrials.gov/#Study/NCT07169539

Background: Dravet syndrome is a complex developmental and epileptic encephalopathy characterized by treatment-resistant seizures and multiple comorbidities that significantly affect quality of life. Traditional clinic-based assessments often fail to capture real-world functional abilities and behavioral changes. Objective: This #study aimed to (1) identify caregiver-prioritized meaningful aspects of health, (2) co-design #digital assessment modalities for home use, and (3) generate preliminary usability and implementation insights to inform future clinical research. Methods: A multistage #patient and public involvement activity was conducted between November 2023 and October 2025 in Spain, in collaboration with a #patient advocacy organization and a #digital health company. #participants were recruited through the Fundación Síndrome de Dravet using a convenience opt-in sampling approach. The process included a caregiver survey to identify meaningful aspects of health, a design workshop to refine priorities and technology preferences, and a 2-week usability testing of a prototype app, followed by a feedback workshop. Data were analyzed descriptively to inform iterative cocreation; no hypothesis testing was performed. Results: Fifty caregivers completed the survey. Neuropsychiatric symptoms (17/48, 35%), independence (16/48, 33%), and social or leisure activities (15/48, 31%) were the most commonly reported affected domains. Eight caregivers #participated in the design workshop, emphasizing flexibility, age-appropriate tasks, and reduced reporting burden. Usability testing was conducted with 5 caregivers over 2 weeks, with 4 of 5 caregivers providing feedback. #participants reported a generally positive reception of the #digital tools, particularly customizable task selection and open-text fields, while identifying challenges related to video-recording logistics and questionnaire repetition. Feedback underscored the need for simplified workflows and individualized approaches to maintain engagement. Conclusions: Cocreation with caregivers is feasible and appears essential for developing meaningful #digital outcome measures for Dravet syndrome. Video-based tasks and remote reporting tools show promise for capturing motor, cognitive, and behavioral domains beyond seizure frequency. Future work should focus on iterative refinement and formal validation of these measures as end points in clinical trials, ensuring that they reflect outcomes that matter most to #patients and families.