Development of an Education Material Targeting Patients Undergoing Lower Extremity Amputation due to Severe Limb Ischemia-A Qualitative Study.

INTRODUCTION: Critical limb-threatening ischemia (CLTI) is associated with a high risk of amputation, yet patients undergoing amputation due to CLTI have little knowledge of the amputation process and the rehabilitation that awaits. The aim of the present study was to develop and validate information material for patients undergoing amputation. METHODS: Nine participants were included in the study. Two focus group interviews were performed with seven patients who had undergone lower extremity amputation due to CLTI within the past 2 y. Additionally, two individual interviews were carried out. A semistructured interview guide was used, and the interviews were transcribed verbatim and analysed using qualitative content analysis with a deductive approach. RESULTS: Three themes were identified as essential for the design of the written information: Perspectives on design and formatting, Providing information to enhance participation in care, and Accessibility to information and support. The prototyped information leaflet was perceived as acceptable, useable, relevant, and comprehensible by the participants. CONCLUSIONS: For patients to actively engage in their care, it is vital that their information needs are met and that they are provided with psychosocial support when needed. Written and oral information should be provided by a trusted healthcare professional.

Using a participatory design to develop an implementation framework for integrating falls prevention for older people within the Chinese primary health care system.

BACKGROUND: Chinese National Essential Public Health Service Package (NEPHSP) has mandated primary health care providers to provide falls prevention for community-dwelling older people. But no implementation framework is available to guide better integration of falls prevention for older people within the primary health care system. METHODS: This is a two-stage online participatory design study consisting of eight workshops with stakeholders from three purposively selected cities. First, two workshops were organised at each study site to jointly develop the framework prototype. Second, to refine, optimise and finalise the prototype via two workshops with all study participants. Data analysis and synthesis occurred concurrently with data collection, supported by Tencent Cloud Meeting software. RESULTS: All participants confirmed that the integration of falls prevention for older people within the NEPHSP was weak and reached a consensus on five opportunities to better integrate falls prevention, including workforce training, community health promotion, health check-ups, health education and scheduled follow-up, during the delivery of NEPHSP. Three regional-tailored prototypes were then jointly developed and further synthesised into a generic implementation framework by researchers and end-users. Guided by this framework, 11 implementation strategies were co-developed under five themes. CONCLUSIONS: The current integration of falls prevention in the NEPHSP is weak. Five opportunities for integrating falls prevention in the NEPHSP and a five-themed implementation framework with strategies are co-identified and developed, using a participatory design approach. These findings may also provide other regions or countries, facing similar challenges, with insights for promoting falls prevention for older people.

KEYPOINTS: The integration of falls prevention for older people was weak in the Chinese PHC system.Five opportunities were identified for better integrating falls prevention for older people in the Chinese PHC system.We developed an implementation framework to strengthen the solid integration of falls prevention in the Chinese PHC system.

Co-designing community-level integral interventions for active ageing: a systematic review from the lens of community-based participatory research.

BACKGROUND: While community-level interventions for promoting active ageing have received increasing attention and there is a trend to leverage technology to support traditional physical or social interventions, little hands-on guidance exists for designing these integral interventions. This study aimed to examine the interventions reported in the literature guided by Community-Based Participatory Research (CBPR) principles. The goal is to extract insights that inform future practices in co-designing integral interventions for active ageing. METHODS: The systematic review focused on community-level interventions promoting active ageing that integrated physical, social, and digital elements, i.e., integral interventions. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. The included interventions were analysed abductively based on the CBPR principles. RESULTS: A total of 13 studies were included, and 24 design considerations were generated under eight categories. Further reflection identified the interrelated nature of these design considerations and pinpointed the gaps in current research. This study highlights the urgency and importance of sharing recruitment methods and resource allocation details, recording and reporting collaboration specifics, and disseminating findings to stakeholders beyond academia. CONCLUSIONS: This study offers valuable insights and practical guidance to researchers and practitioners developing community-level integral interventions for active ageing. The findings also serve as a starting point for accumulating knowledge and practice in co-designing integral interventions for active ageing at the community level. The next crucial phase involves evaluating these design considerations within real-world cases to assess their applicability and identify potential areas for improvement.

The development of a novel sexual health promotion intervention for young people with mental ill-health: the PROSPEct project.

BACKGROUND: Young people with mental ill-health experience higher rates of high-risk sexual behaviour, have poorer sexual health outcomes, and lower satisfaction with their sexual wellbeing compared to their peers. Ensuring good sexual health in this cohort is a public health concern, but best practice intervention in the area remains under-researched. This study aimed to co-design a novel intervention to address the sexual health needs of young people with mental ill-health to test its effectiveness in a future trial undertaken in youth mental health services in Melbourne, Australia. METHODS: We followed the 2022 Medical Research Council (MRC) guidelines for developing and evaluating complex interventions. This involved synthesising evidence from the 'top down' (published evidence) and 'bottom up' (stakeholder views). We combined systematic review findings with data elicited from qualitative interviews and focus groups with young people, carers, and clinicians and identified critical cultural issues to inform the development of our intervention. RESULTS: Existing evidence in the field of sexual health in youth mental health was limited but suggested the need to address sexual wellbeing as a concept broader than an absence of negative health outcomes. The Information-Motivation-Belief (IMB) model was chosen as the theoretical Framework on which to base the intervention. Interviews/focus groups were conducted with 29 stakeholders (18 clinicians, three carers, and eight young people). Synthesis of the evidence gathered resulted in the co-design of a novel intervention consisting of an initial consultation and four 60-90-minute sessions delivered individually by a young 'sex-positive' clinician with additional training in sexual health. Barriers and supports to intervention success were also identified. CONCLUSIONS: Using the MRC Framework has guided the co-design of a potentially promising intervention that addresses the sexual health needs of young people with mental ill-health. The next step is to test the intervention in a one-arm feasibility trial.

Designing a tool ensuring older patients the right medication at the right time after discharge from hospital- the first step in a participatory design process.

BACKGROUND: On average, older patients use five or more medications daily, increasing the risk of adverse drug reactions, interactions, or medication errors. Healthcare sector transitions increase the risk of information loss, misunderstandings, unclear treatment responsibilities, and medication errors. Therefore, it is crucial to identify possible solutions to decrease these risks. Patients, relatives, and healthcare professionals were asked to design the solution they need. METHODS: We conducted a participatory design approach to collect information from patients, relatives, and healthcare professionals. The informants were asked to design their take on a tool ensuring that patients received the correct medication after discharge from the hospital. We included two patients using five or more medications daily, one relative, three general practitioners, four nurses from different healthcare sectors, two hospital physicians, and three pharmacists. RESULTS: The patients' solution was a physical location providing a medication overview, including side effects and interactions. Healthcare professionals suggested different solutions, including targeted and timely information that provided an overview of the patient's diagnoses, treatment and medication. The common themes identified across all sub-groups were: (1) Overview of medications, side effects, and diagnoses, (2) Sharing knowledge among healthcare professionals, (3) Timely discharge letters, (4) Does the shared medication record and existing communication platforms provide relevant information to the patient or healthcare professional? CONCLUSION: All study participants describe the need for a more concise, relevant overview of information. This study describes elements for further elaboration in future participatory design processes aimed at creating a tool to ensure older patients receive the correct medication at the correct time.

Cocreating eating disorder education solutions: A design thinking approach to dietetics curricula in Australia.

BACKGROUND: As the prevalence of eating disorders continues to increase, there is an urgent need to equip the emerging dietetics workforce to provide care to this growing population. The present study aimed to describe a five-step design thinking process that was applied to brainstorm ideas and develop and test solutions for consideration in the future. METHODS: A pragmatic, five-step design thinking approach was used during a 1-day, in-person design thinking retreat. Purposive sampling was used to identify key stakeholders, including subject matter, learning and teaching, as well as lived experience experts, dietetics students and recent graduates. Reflexive thematic analysis was used to analyse brainstormed and design solution ideas. RESULTS: Seventeen participants attended the design thinking retreat in April 2023. Four education prototypes were developed and tested by stakeholders including: (1) a change to accreditation requirements for dietetics curricula; (2) a multimodal learning package for penultimate year students; (3) embedding disordered eating and eating disorder content into existing curriculum and upskilling educators; and (4) codesigning an eating disorder module. CONCLUSIONS: The design thinking retreat engaged a variety of stakeholders in curriculum design resulting in an array of prototype approaches that aimed to embed eating disorder content into university curricula. Further research is needed to test the prototypes and understand what impact this has on dietetics students' feelings of preparedness to provide care to people seeking this support.

Communicating the results of risk-based breast cancer screening through visualizations of risk: a participatory design approach.

BACKGROUND: Risk-based breast cancer (BC) screening raises new questions regarding information provision and risk communication. This study aimed to: 1) investigate women's beliefs and knowledge (i.e., mental models) regarding BC risk and (risk-based) BC screening in view of implications for information development; 2) develop novel informational materials to communicate the screening result in risk-based BC screening, including risk visualizations of both quantitative and qualitative information, from a Human-Centered Design perspective. METHODS: Phase 1: Interviews were conducted (n = 15, 40-50 years, 5 lower health literate) on women's beliefs about BC risk and (risk-based) BC screening. Phase 2: In three participatory design sessions, women (n = 4-6 across sessions, 40-50 years, 2-3 lower health literate) made assignments and created and evaluated visualizations of risk information central to the screening result. Prototypes were evaluated in two additional sessions (n = 2, 54-62 years, 0-1 lower health literate). Phase 3: Experts (n = 5) and women (n = 9, 40-74 years) evaluated the resulting materials. Two other experts were consulted throughout the development process to ensure that the content of the information materials was accurate. Interviews were transcribed literally and analysed using qualitative thematic analysis, focusing on implications for information development. Notes, assignments and materials from the participatory design sessions were summarized and main themes were identified. RESULTS: Women in both interviews and design sessions were positive about risk-based BC screening, especially because personal risk factors would be taken into account. However, they emphasized that the rationale of risk-based screening and classification into a risk category should be clearly stated and visualized, especially for higher- and lower-risk categories (which may cause anxiety or feelings of unfairness due to a lower screening frequency). Women wanted to know their personal risk, preferably visualized in an icon array, and wanted advice on risk reduction and breast self-examination. However, most risk factors were considered modifiable by women, and the risk factor breast density was not known, implying that information should emphasize that BC risk depends on multiple factors, including breast density. CONCLUSIONS: The information materials, including risk visualizations of both quantitative and qualitative information, developed from a Human-Centered Design perspective and a mental model approach, were positively evaluated by the target group.

Epistemological aspects of participatory design studies conducted in the field of health science.

AIM(S): To discuss the methodological aspects of participatory design, arguing for a three-phase approach and the suitability of situating participatory design within a phenomenological-hermeneutical tradition in health science. DESIGN AND METHODS: Methodological discussion based on participatory design theory, epistemology and research studies. RESULTS: The epistemological and methodological discussions show how the core values and key elements of participatory design align with the phenomenological-hermeneutical approach. In addition, examples of participatory design studies are provided to illustrate how it can be conducted in health science. CONCLUSION: Participatory design is a flexible framework based on genuine participation, defined by three core values: having a say, mutual learning and democratization. The iterative processes allow for adjustments in alignment with the core values and the scientific stance that defines the choice of methods, tools and techniques. A phenomenological-hermeneutic approach in participatory design studies is relevant and aligned with the core values of participatory design. Thus, this paper argues for a close integration between the participatory design methodology and the phenomenological-hermeneutic scientific approach within health science. IMPLICATIONS FOR THE PROFESSION: Participatory design is a powerful methodology with core values that can co-design sustainable health technologies with potential to impact patient care and the clinical practice of nurses. When combined with qualitative research methods, patients' lived experiences serve as the foundation for improving clinical nursing practice. Discussing the epistemological aspects of participatory design provides nurse researchers with a coherent methodological understanding, essential for the continual development of nursing research. IMPACT: This paper discusses the research methodology of participatory design within health sciences. It aims to address the lack of understanding of the methodology, particularly within a specific scientific stance. The main finding is the elaboration on participatory design and the relevance of a phenomenological-hermeneutical approach. The paper has the potential to impact researchers, master's and PhD students, as well as others engaged in participatory design or other methodologies related to user involvement within health science. REPORTING METHOD: No available EQUATOR guidelines were applicable to this methodological paper, as no new data were created or analysed. PATIENT OR PUBLIC CONTRIBUTION: There was no direct patient or public contribution, as this is a methodological paper.

"People are now working together for a common good": The effect on social capital of participatory design for community-level sanitation infrastructure in urban informal settlements.

Communities with higher levels of social capital perform better than communities with lower social capital in community-level water and sanitation interventions and have better health outcomes. Although research recommends bolstering social capital to improve intervention outcomes, few studies provide empirical evidence on the effect of intervention activities on social capital. This study aimed to evaluate the effect of participatory design and community engagement activities on social capital among urban informal settlements in Suva, Fiji and Makassar, Indonesia enrolled in the Revitalizing Informal Settlements and their Environments trial using the Short Adapted Social Capital Assessment Tool. We performed confirmatory factor analyses (CFA) to test tool performance and built structural equation models to assess intervention effect on CFA-informed, sub-scale scores for cognitive and structural social capital. Qualitative in-depth interviews in Fiji and Indonesia and focus group discussions in Fiji provided nuanced understanding of intervention effects on social capital from residents' perspectives. Results confirmed the hypothesized two-factor solution but revealed differences by country and by gender in Indonesia. The intervention appeared positively related to cognitive social capital among men and women in Indonesia and negatively related to cognitive and structural social capital among men and women in Fiji. While effect sizes were small and cluster-adjustment for a small number of settlements yielded non-significant effects, trends were consistent across models and bivariate analyses and were corroborated by qualitative findings. Several contextual factors may explain these results, including timing and duration of intervention activities and influence of COVID-19. Qualitative data suggested that the relationship between participatory design and social capital may be bidirectional, helping to explain why certain settlements appeared to be better equipped to benefit from intervention activities. Practitioners and program designers should carefully consider the social pre-conditions of communities in which they intend to work to optimize program outcomes and avoid unintended consequences.

Older adults' needs and preferences for a nutrition education digital health solution: A participatory design study.

BACKGROUND: The global population is ageing rapidly and there is a need for strategies to promote health and wellbeing among older adults. Nutrition knowledge is a key predictor of dietary intake; therefore, effective educational programmes are urgently required to rectify poor dietary patterns. Digital health technologies provide a viable option for delivering nutrition education that is cost-effective and widely accessible. However, few technologies have been developed to meet the unique needs and preferences of older adults. OBJECTIVE: The aim of this study was to explore technology use among older adults and qualitatively determine the content needs and design preferences for an online nutrition education resource tailored to older adult consumers in Australia. METHODS: Twenty adult participants aged 55 years and older (95% female) participated in one of four 2-h participatory design workshops. In each workshop, prompted discussion questions were used to explore participants' technology use and preferences and to explore content needs and design preferences for an online nutrition education resource specific to older adults. RESULTS: All participants were regularly using a range of different devices (e.g., smartphones, tablets and computers) and reported being comfortable doing so. Participants wanted a website that provided general nutrition information, practical advice and recipes. To enhance engagement, they sought a personalised resource that could be adjusted to suit their needs, included up-to-date information and allowed for easy sharing with others by exporting information as a PDF. CONCLUSIONS: Participatory design methods generate new knowledge for designing and tailoring digital health technologies to be appropriate and useful for the target audience. Specifically, older adults seek an online resource that has large and simple fonts with clear categories, providing them with practical advice and general nutrition information that can be personalised to suit their own needs and health concerns, with the option to export and print information into a paper-based format. PATIENT OR PUBLIC CONTRIBUTION: Older adults actively participated in the development and evaluation process to generate ideas about potential features, functionalities, uses and practicalities of an online nutrition education resource.

Co-designing a community lifestyle intervention program to reduce postpartum weight retention.

BACKGROUND: Postpartum weight retention is a major contributor to obesity in later life resulting in long-term health consequences in women. Postpartum lifestyle interventions are known to be effective in reducing postpartum weight retention and improving the overall health and wellbeing of mothers but have poor reach and engagement. This study describes the engagement of mothers with young children in the development of a theory- and evidence-based intervention to reduce postpartum weight retention. METHODS: A participatory design methodology with input from a community mothers' group, literature reviews and an expert advisory group was applied. Mothers who were members of 'Mothers of Preschoolers' (MOPS) were invited to participate in a focus group discussion and two co-design workshop sessions. RESULTS: Thirteen women participated in a focus group discussion and 12 women in each co-design workshop. We found that mothers valued having social support from their peers, practical support such as meal delivery, and learning opportunities that focus on the mother's health and wellbeing. The advisory group suggested leveraging the unique skills and prior experiences of mothers within the group and developing a curriculum that mothers can be trained to deliver. CONCLUSION: A program that emphasizes the strengths and value of mothers can increase their self-worth and self-confidence resulting in intrinsic motivation to improve lifestyle behaviours. An intervention designed to be implemented by MOPS for its members and incorporated into their regular sessions has the potential for feasibility and acceptability among mothers with young children. PATIENT OR PUBLIC CONTRIBUTION: Mothers with young children were part of the program planners and were involved in the design and conduct of this study and in the interpretation of the findings. A member of a community mothers' group recruited other mothers with young children within the group to participate in a series of sessions to discuss their experiences of the postpartum period and preferences for a lifestyle program. The mothers identified the behavioural outcomes and program goals for a postpartum lifestyle program and then generated the program ideas based on these.

From design to action: participatory approach to capacity building needs for local overdose response plans.

BACKGROUND: In response to the rise in opioid-related deaths, communities across Ontario have developed opioid or overdose response plans to address issues at the local level. Public Health Ontario (PHO) leads the Community Opioid / Overdose Capacity Building (COM-CAP) project, which aims to reduce overdose-related harms at the community level by working with communities to identify, develop, and evaluate capacity building supports for local needs around overdose planning. The 'From Design to Action' co-design workshop used a participatory design approach to engage communities in identifying the requirements for capacity building support. METHODS: A participatory approach (co-design) provided opportunity for collaborative discussion around capacity building needs at the community level. The co-design workshop included three structured collaborative activities to 1) prioritize scenarios that illustrated various challenges associated with community overdose response planning, 2) prioritize the challenges within each scenario and 3) prioritize the supports to address each of these challenges. It was conducted with fifty-two participants involved in opioid/overdose-related response plans in Ontario. Participatory materials were informed by the results of a situational assessment (SA) data gathering process, including survey, interview, and focus group data. A voting system, including dot stickers and discussion notes, was applied to identify priority supports and delivery mechanisms. RESULTS: At the workshop, key challenges and top-priority supports were identified, for development and implementation. The prioritized challenges were organized into five categories of capacity building supports addressing: 1) stigma & equity; 2) trust-based relationships, consensus building & on-going communication; 3) knowledge development & on-going access to information and data; 4) tailored strategies and plan adaptation to changing structures and local context; and 5) structural enablers and responsive governance. CONCLUSION: Using a participatory approach, the workshop provided an opportunity for sharing, generating, and mobilizing knowledge to address research-practice gaps at the community level for opioid response planning. The application of health design methods such as the 'From Design to Action' co-design workshop supports teams to gain a deeper understanding of needs for capacity building as well as illustrating the application of participatory approaches in identifying capacity building needs for complex public health issues such as the overdose crisis.

Participatory Design and Evaluation of the "Stem Cells Australia" Website for Delivering Complex Health Knowledge: Mixed Methods Study.

BACKGROUND: The internet has become a commonly used information source for people seeking to understand their health care options. However, inconsistent representation about what stem cell treatments are available and from whom, coupled with the lack of transparency about what has been shown to work or is even safe, can distract and mislead users. Given these challenges, there is a need to develop effective evidence-based tools for delivering information about health care options involving stem cells. OBJECTIVE: A need to redesign an existing website in Australia was identified to provide trustworthy information about stem cell research and to counter misinformation. Using a participatory design approach to generate an understanding of what information users need for stem cell treatments, the Stem Cells Australia website serves as a case study for the development and evaluation of websites delivering complex messages about science and health. METHODS: This study comprised 3 steps. First, a focus group and several one-on-one interviews with a purposive sample of users (n=12) were conducted to identify their needs and requirements. Second, we designed a new version of the website based on findings from the focus group and interviews. Finally, for evaluating the participatory design process, we collected 180 days of Google Analytics data for both the original and redesigned versions (90 days for each) and compared their differences using 2-sample z tests. RESULTS: The feedback from participants was grouped into 3 themes-needed and unwanted information, how and where to obtain information, and their information preferences. These were translated into requirements for rebuilding the website. The redesigned version reached users in other continents, despite the daily numbers of users (-61.2%; P<.001) and sessions (-61.7%; P<.001) decreasing. The redesigned version also showed substantial decrease in daily bounce rate (-97.2%; P<.001), significant increase in the daily average of page reads per session (+110.8%; P<.001), and long daily average for session duration (+22.9%; P=.045). Navigation flow analysis showed more traffic toward web pages related to health conditions in the redesigned version. CONCLUSIONS: Websites about stem cell research need to provide content for vulnerable global audiences. Participatory design that addresses knowledge gaps and information needs can produce better performance and engagement, which can be evaluated using Google Analytics, a common web analytics tool used by many websites. Learnings for improving the metrics regarding website identity, research updates, and clinical trials are concluded, which can inform the future design of websites seeking to engage users and provide reliable and accessible science and health information including but not limited to stem cell research and therapies.

Practices of Care in Participatory Design With Older Adults During the COVID-19 Pandemic: Digitally Mediated Study.

BACKGROUND: Participatory Design (PD), albeit an established approach in User-Centered Design, comes with specific challenges when working with older adults as research participants. Addressing these challenges relates to the reflection and negotiation of the positionalities of the researchers and research participants and includes various acts of giving and receiving help. During the COVID-19 pandemic, facets of positionalities and (mutual) care became particularly evident in qualitative and participatory research settings. OBJECTIVE: The aim of this paper was to systematically analyze care practices of participatory (design) research, which are to different extents practices of the latter. Using a multiyear PD project with older people that had to take place remotely over many months, we specify different practices of care; how they relate to collaborative work in the design project; and represent foundational practices for sustainable, long-term co-design. Our research questions were "How can digitally-mediated PD work during COVID-19 and can we understand such digital PD as 'care'?" METHODS: Our data comes from the Joint Programming Initiative "More Years, Better Lives" (JPI MYBL), a European Union project that aims to promote digital literacy and technology appropriation among older adults in domestic settings. It targeted the cocreation, by older adults and university researchers, of a mobile demo kit website with cocreated resources, aimed at improving the understanding of use options of digital tools. Through a series of workshops, a range of current IT products was explored by a group of 21 older adults, which served as the basis for joint cocreative work on generating design ideas and prototypes. We reflect on the PD process and examine how the actors enact and manifest care. RESULTS: The use of digital technology allowed the participatory project to continue during the COVID-19 pandemic and accentuated the digital skills of older adults and the improvement of digital literacy as part of "care." We provide empirically based evidence of PD with older adults developing digital literacy and sensitizing concepts, based on the notion of care by Tronto for differentiating aspects and processes of care. The data suggest that it is not enough to focus solely on the technologies and how they are used; it is also necessary to focus on the social structures in which help is available and in which technologies offer opportunities to do care work. CONCLUSIONS: We document that the cocreation of different digital media tools can be used to provide a community with mutual care. Our study demonstrates how research participants effectively enact different forms of care and how such "care" is a necessary basis for a genuinely participatory approach, which became especially meaningful as a form of support during COVID-19. We reflect on how notions of "care" and "caring" that were central to the pandemic response are also central to PD.

Identification of research priorities in CHD: empowering patients and families through participation in the development of formal research agendas.

BACKGROUND: Conquering CHD, formerly known as the Pediatric Congenital Heart Association (PCHA), is the leading congenital heart disease (CHD) patient advocacy organisation in the United States of America, and places high priority on patient engagement in the research process. Participatory design is an approach to problem-solving that utilises the knowledge and opinions of groups of people to generate plans and new ideas. Utilising this mode of patient engagement, patients and families engaged with Conquering CHD assisted in developing a list of research priorities which was then distributed to the larger membership with instructions to rank the priorities in order of importance. Upon completion, these items were compared to the current scientific literature to assess correlation with current publications. This cross-sectional study and literature review aimed to assess the priorities of patients and families in CHD research and to determine the reflection of these areas in the current body of scientific literature. METHODS: This cross-sectional study utilised a survey asking participants to rank the importance of research items within categories including "Technology Advances," "Genetic and Cellular Research," "Broad Understanding of CHD," and "Psychosocial Outcomes" which was distributed through social media and email to 43,168 accounts across all platforms. Respondents were asked to place each item in a ranked order in each category, with the value "1" representing the most preferred for each participant. Anyone engaged with Conquering CHD was eligible to complete the study, including patients and families. Subsequently, a literature review of the largest medical databases including PubMed, Scopus, and ScienceDirect was undertaken to determine the number of articles published per each topic which was then assessed to determine if there is a correlation between patient-ranked priorities and the current body of literature. RESULTS: The study generated a total response of 527 participants. Regarding "Technology Advances," valve replacement was the preferred topic (mean rank 2.07, IQR 2). Stem cell research was the favoured topic in "Genetic and Cellular Research" (mean rank 2.53, IQR 2). Access to care was the priority in the "Broadening Understanding of CHD" (mean rank 1.24, IQR 1). Pertaining to "Psychosocial Outcomes", psychological/emotional effects was the highest ranked topic (mean rank 1.46, IQR 1). The literature review returned a total of 135,672 articles in the areas of interest. For "Valve Replacement", 8361 articles resulted reflecting a proportion of 0.097 of total articles. For "Stem Cell Research", 9921 articles resulted reflecting a proportion of 0.115 of total articles. For "Access to Care", 7845 articles resulted reflecting a proportion of 0.091 of total articles. For "Psychological/Emotional Effects", 6422 articles resulted reflecting a proportion of 0.074 of total articles. A Spearman's correlation demonstrated no correlation between the preferred domain of CHD research and the number of articles published for that domain (rs = 0.02, p = 0.94). CONCLUSIONS: This process demonstrates the effectiveness of participatory design, using a patient and family network to determine the research items of concern to those affected by CHD. The cross-sectional survey was effective in assessing patient and family priorities but was limited by access to reliable internet and delivery only in English. Though the study had a large response rate, it was limited to patients already engaged with Conquering CHD. For these reasons, it may not completely reflect the opinions of the total population affected by CHD. However, this offers valuable insight into patient-determined priorities and reveals that the current scientific literature does not correlate with these items. These data serve to inform individual and institutional research agendas to better reflect the needs and desires of this population.

Interaction with a Virtual Coach for Active and Healthy Ageing.

Since life expectancy has increased significantly over the past century, society is being forced to discover innovative ways to support active aging and elderly care. The e-VITA project, which receives funding from both the European Union and Japan, is built on a cutting edge method of virtual coaching that focuses on the key areas of active and healthy aging. The requirements for the virtual coach were ascertained through a process of participatory design in workshops, focus groups, and living laboratories in Germany, France, Italy, and Japan. Several use cases were then chosen for development utilising the open-source Rasa framework. The system uses common representations such as Knowledge Bases and Knowledge Graphs to enable the integration of context, subject expertise, and multimodal data, and is available in English, German, French, Italian, and Japanese.

Needs assessment in patients with inflammatory bowel disease in the encounter and communication with healthcare professionals: A fieldwork study.

AIM: To explore how patients with Inflammatory bowel disease experienced encounters with healthcare professionals in two gastrointestinal outpatient clinics to demonstrate what matters in the communication between patients and healthcare professionals. DESIGN: This fieldwork study is part of a larger study developing an application for patients with inflammatory bowel disease in a framework inspired by Participatory Design. Participatory design consists of three phases and this study focused on the first phase, needs assessment. A phenomenological hermeneutic approach and qualitative methods were applied to obtain an understanding of patients' needs. METHODS: Three weeks of participant observations and three focus groups with 14 subjects were conducted at two university hospitals in Denmark. Field notes and interview transcripts were analysed using condensation of meaning and interpreted based on interactional nursing practice theory. The reporting method adhered to the EQUATOR guideline: COREQ. RESULTS: Four themes emerged: Easy and dependable access to healthcare professionals. Predictability of follow-up appointments. Importance of privacy during patient exams and Quality of time spent with healthcare professionals. CONCLUSION: Easy, dependable access, privacy, presence and predictability of follow-up appointments were important to patients with Inflammatory Bowel Disease. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: In communication with patients with inflammatory bowel disease, healthcare professionals must be aware of privacy and the importance of predictable follow-up agreements. They must be aware that presence and easy, reliable access positively affect patients' self-care skills. PATIENT CONTRIBUTION: This study is part of a larger project based on Participatory design involving patients and healthcare professionals in the development of technology to support communication.

The co-design of an online support programme with and for informal carers of people with heart failure: A methodological paper.

AIM: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure. DESIGN: A co-design process built on core concepts and ideas embedded in co-design methodology. DATA SOURCES: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme. OUTCOMES: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal. CONCLUSION: Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process. RELEVANCE TO CLINICAL PRACTICE: Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel. REPORTING METHODS: Consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Both informal carers and content creators were involved in developing the support programme.

Application of participatory design and open source to a sustainable proposal for sorption reactor design.

An implementation proposal that seeks to globalize the scope of the sustainable technologies developed in the University laboratories is presented. This approach uses the generation of triple-impact projects placing people at the center of technological development to bring technical and scientific knowledge into a service design oriented to global sustainable solutions. This research is an approach to what a hub for scientific research, technological implementation, and human needs would look like by designing common environments in which to interact and expand knowledge in an iterated way through the experience of all the actors involved in technological implementation. As a control case, a new technology developed at the Universidad de Buenos Aires, consisting of using sustainable materials as tubular reactor fillers for water treatment was chosen. Based on data obtained within the framework of a University extension project, in which the water quality diagnosis for human consumption was carried out and cross-examined with the mathematical analysis of sorption, design parameters of the reactor, participatory design, and open source concepts application, different virtual environments were generated with distinct objectives: i) open design environment: publishing and mapping of installed sorption reactors, reactor model plans, and useful information related to drinking water quality (aimed at contributors of the open source design environment); ii) platform for academic actors linking: connecting data between prototyping lab for participatory design of sorption reactors (aimed at university research users); iii) information disclosure page: space where the implemented technology impact is displayed and shows options to contact researchers and request a reactor design diagnosis for another community (aimed at beneficiary users). A technological service designed to link the University with the community was proposed, by resolving one of the main gaps related to the possibility for communities to access public financing for self-managed improvement projects, increasing the appropriation of the adopted technology and democratizing public investment, making it sustainable over time.

Co-designing a curriculum model for career education: perspectives from regional communities in Australia.

The vocational experiences and skills of young adolescents could be infused into formal education by identifying career competencies to be taught within the academic curriculum. Such curriculum practices that embed educational and career pathways must also include the perspectives of students and the community, particularly those from marginalised groups. Drawing on data from 111 teachers, principals, carers and students, this paper presents research undertaken to co-design career education lesson plans within an infused model of the curriculum for early Middle Year students from regional, rural, and remote Australia. The lesson plans and activities were designed to allow for meaningful self-reflection and goal-setting that could be seamlessly infused into the formal curriculum and help embed early-stage career education. The paper concludes by projecting opportunities and challenges for seamless curriculum integration, while pertinent to the Australian context, can also be read with broader relevance to other educational systems and schools.