Even though citizen and patient engagement in health research has a long tradition, citizen science in health has only recently gained attention and recognition. However, at present, there is no clear overview of the specifics and challenges of citizen science initiatives in the health domain. Such an overview could contribute to highlighting and articulating the different needs of stakeholders engaged in any form of citizen science in the health domain. It may also encourage the input of citizens and patients alike in health research and innovation, policy, and practice. This paper reports on a survey developed by the European Citizen Science Association (ECSA)’s Working Group “Citizen Science for Health,” to highlight the perceived characteristics and enabling factors of citizen science in the health domain, and to formulate a direction for future work and research. The survey was available in six languages and was open between January and August 2022. The majority of the 254 respondents were from European countries, and the largest stakeholder respondent group was researchers. Respondents were asked about their perspectives on the particular characteristics of citizen science performed in health and biomedical research, as well as the challenges and opportunities it affords. Ethics, the complexity of the health domain, and the overlap in roles whereby the researcher is sometimes also the subject of research, were the main issues suggested as being specific to citizen science in health. The top two areas that respondents identified as in need of development were “balanced return on investment” and “ethics.” This publication discusses these and other conditions with references to current literature.
MULTIFILE
Objective: To explore predictors of dropout of patients with chronic musculoskeletal pain from an interdisciplinary chronic pain management programme, and to develop and validate a multivariable prediction model, based on the Extended Common- Sense Model of Self-Regulation (E-CSM). Methods: In this prospective cohort study consecutive patients with chronic pain were recruited and followed up (July 2013 to May 2015). Possible associations between predictors and dropout were explored by univariate logistic regression analyses. Subsequently, multiple logistic regression analyses were executed to determine the model that best predicted dropout. Results: Of 188 patients who initiated treatment, 35 (19%) were classified as dropouts. The mean age of the dropout group was 47.9 years (standard deviation 9.9). Based on the univariate logistic regression analyses 7 predictors of the 18 potential predictors for dropout were eligible for entry into the multiple logistic regression analyses. Finally, only pain catastrophizing was identified as a significant predictor. Conclusion: Patients with chronic pain who catastrophize were more prone to dropout from this chronic pain management programme. However, due to the exploratory nature of this study no firm conclusions can be drawn about the predictive value of the E-CSM of Self-Regulation for dropout.
Aim of the proposal and urban challenge it addresses* (max 200)The aim of this proposal is to develop an educational program with the provisional name ‘Care and Law’. The aim of this multidisciplinary educational program is to increase the knowledge of future professionals working at the intersection of health, wellbeing and law in the urban environment of Amsterdam.In the Amsterdam metropolitan society, legal and healthcare professionals (including social workers) are increasingly confronted with issues at the intersection of (health)care and justice. Special areas of interest are the problems surrounding people suffering from a mental illness, youngsters that cause nuisances of themselves on the streets and homeless people. The approach to this kind of problems requires a multidisciplinary approach. This means that healthcare, social welfare and legal professionals have to work together, for instance to apply for involuntary care. However, these professionals all have their own perspective and responsibility in these situations which often results in tensions among the professionals and as a result a delayed provision of care (van den Hooff, 2015).External partner(s) (if applicable) Project description abstract (max 750 woorden)We like to develop a new educational program in which students from different faculties work together on real time cases. At this moment, students at the Faculty of Applied Social Sciences and Law and the Faculty of Health are primarily trained in a monodisciplinary manner. They may be better equipped for their future work, if they get interdisciplinary training and courses. They need to learn what is meant by ‘Transcending Responsibility’; which means to be open to the perspective of the others professionals and to create a new shared responsibility (van den Hooff, 2015).In this project, we like to work together with and learn from the expertise of other members of the consortium to enhance the quality of this educational project. The focus of the present project is to develop a new multidisciplinary educational program surrounding legal and care related themes. The idea is to familiarize students with the legal contexts in which they have to operate (for instance themes related to pressure and coercion) as well as the welfare and care context in which the client/patient is situated (the care from neighborhood teams, youth care teams or mental health care teams). In addition, student might jointly develop integrated approaches based on case studies from the professional field.We like to be inspired, informed about and discuss innovative approaches which make interdisciplinary educational programs possible. Maybe it is possible to develop an international educational program with members of the consortium.
MULTIFILE
Horse riding falls under the “Sport for Life” disciplines, where a long-term equestrian development can provide a clear pathway of developmental stages to help individuals, inclusive of those with a disability, to pursue their goals in sport and physical activity, providing long-term health benefits. However, the biomechanical interaction between horse and (disabled) rider is not wholly understood, leaving challenges and opportunities for the horse riding sport. Therefore, the purpose of this KIEM project is to start an interdisciplinary collaboration between parties interested in integrating existing knowledge on horse and (disabled) rider interaction with any novel insights to be gained from analysing recently collected sensor data using the EquiMoves™ system. EquiMoves is based on the state-of-the-art inertial- and orientational-sensor system ProMove-mini from Inertia Technology B.V., a partner in this proposal. On the basis of analysing previously collected data, machine learning algorithms will be selected for implementation in existing or modified EquiMoves sensor hardware and software solutions. Target applications and follow-ups include: - Improving horse and (disabled) rider interaction for riders of all skill levels; - Objective evidence-based classification system for competitive grading of disabled riders in Para Dressage events; - Identifying biomechanical irregularities for detecting and/or preventing injuries of horses. Topic-wise, the project is connected to “Smart Technologies and Materials”, “High Tech Systems & Materials” and “Digital key technologies”. The core consortium of Saxion University of Applied Sciences, Rosmark Consultancy and Inertia Technology will receive feedback to project progress and outcomes from a panel of international experts (Utrecht University, Sport Horse Health Plan, University of Central Lancashire, Swedish University of Agricultural Sciences), combining a strong mix of expertise on horse and rider biomechanics, veterinary medicine, sensor hardware, data analysis and AI/machine learning algorithm development and implementation, all together presenting a solid collaborative base for derived RAAK-mkb, -publiek and/or -PRO follow-up projects.
The pace of technology advancements continues to accelerate, and impacts the nature of systems solutions along with significant effects on involved stakeholders and society. Design and engineering practices with tools and perspectives, need therefore to evolve in accordance to the developments that complex, sociotechnical innovation challenges pose. There is a need for engineers and designers that can utilize fitting methods and tools to fulfill the role of a changemaker. Recognized successful practices include interdisciplinary methods that allow for effective and better contextualized participatory design approaches. However, preliminary research identified challenges in understanding what makes a specific method effective and successfully contextualized in practice, and what key competences are needed for involved designers and engineers to understand and adopt these interdisciplinary methods. In this proposal, case study research is proposed with practitioners to gain insight into what are the key enabling factors for effective interdisciplinary participatory design methods and tools in the specific context of sociotechnical innovation. The involved companies are operating at the intersection between design, technology and societal impact, employing experts who can be considered changemakers, since they are in the lead of creative processes that bring together diverse groups of stakeholders in the process of sociotechnical innovation. A methodology will be developed to capture best practices and understand what makes the deployed methods effective. This methodology and a set of design guidelines for effective interdisciplinary participatory design will be delivered. In turn this will serve as a starting point for a larger design science research project, in which an educational toolkit for effective participatory design for socio-technical innovation will be designed.
This project addresses the fundamental societal problem that encryption as a technique is available since decades, but has never been widely adopted, mostly because it is too difficult or cumbersome to use for the public at large. PGP illustrates this point well: it is difficult to set-up and use, mainly because of challenges in cryptographic key management. At the same time, the need for encryption has only been growing over the years, and has become an urgent problem with stringent requirements – for instance for electronic communication between doctors and patients – in the General Data Protection Regulation (GDPR) and with systematic mass surveillance activities of internationally operating intelligence agencies. The interdisciplinary project "Encryption for all" addresses this fundamental problem via a combination of cryptographic design and user experience design. On the cryptographic side it develops identity-based and attribute-based encryption on top of the attribute-based infrastructure provided by the existing IRMA-identity platform. Identity-based encryption (IBE) is a scientifically well-established technique, which addresses the key management problem in an elegant manner, but IBE has found limited application so far. In this project it will be developed to a practically usable level, exploiting the existing IRMA platform for identification and retrieval of private keys. Attribute-based encryption (ABE) has not reached the same level of maturity yet as IBE, and will be a topic of further research in this project, since it opens up attractive new applications: like a teacher encrypting for her students only, or a company encrypting for all employees with a certain role in the company. On the user experience design side, efforts will be focused on making these encryption techniques really usable (i.e., easy to use, effective, efficient, error resistant) for everyone (e.g., also for people with disabilities or limited digital skills). To do so, an iterative, human-centred and inclusive design approach will be adopted. On a fundamental level, scientific questions will be addressed, such as how to promote the use of security and privacy-enhancing technologies through design, and whether and how usability and accessibility affect the acceptance and use of encryption tools. Here, theories of nudging and boosting and the unified theory of technology acceptance and use (known as UTAUT) will serve as a theoretical basis. On a more applied level, standards like ISO 9241-11 on usability and ISO 9241-220 on the human-centred design process will serve as a guideline. Amongst others, interface designs will be developed and focus groups, participatory design sessions, expert reviews and usability evaluations with potential users of various ages and backgrounds will be conducted, in a user experience and observation laboratory available at HAN University of Applied Sciences. In addition to meeting usability goals, ensuring that the developed encryption techniques also meet national and international accessibility standards will be a particular point of focus. With respect to usability and accessibility, the project will build on the (limited) usability design experiences with the mobile IRMA application.
