Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease.
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ABSTRACT: Introduction
Virtual Communities of Practices (vCoP) offer patients the possibility to interact and share tools and knowledge necessary for their empowerment. This paper describes the co-design process of a vCoP for the empowerment of people with ischemic heart disease (IHD).Methods
We used a modified experience-based design approach to co-design the vCoP in collaboration with people with IHD and health professionals consisting of two phases: exploratory and development phase. Data collection techniques included listening labs, workshops, and online participation.Results
Twenty-five people with IHD and ten health professionals participated. Experiences and needs for empowerment in IHD were identified in the exploratory phase allowing for the development of a Patient Journey Map. In the development phase, people with IHD prioritized needs to be addressed by the vCoP content framework in addition to content proposals.Discussion
The Patient Journey Map helped to easily visualize the empowerment needs of people with IHD and it might be transferable for the development of other people-centred interventions. The co-design process also allowed the development of training materials adapted to the priorities of people with IHD.Conclusion
A people-centred co-design process of a vCoP may facilitate the empowerment of people with IHD.
SUBMITTER: Toledo-Chavarri A
PROVIDER: S-EPMC7664302 | biostudies-literature | 2020 Nov
REPOSITORIES: biostudies-literature
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Co-Design Process of a Virtual Community of Practice for the Empowerment of People with Ischemic Heart Disease.
Toledo-Chávarri Ana A Ramos-García Vanesa V Koatz Débora D Torres-Castaño Alezandra A Perestelo-Pérez Lilisbeth L Ramírez-Puerta Ana Belén AB Tello-Bernabé María-Eugenia ME García-García Juan-Manuel JM García-García Javier J Pacheco-Huergo Valeria V Orrego Carola C González-González Ana Isabel AI
International journal of integrated care 20201109 4
<h4>Introduction</h4>Virtual Communities of Practices (vCoP) offer patients the possibility to interact and share tools and knowledge necessary for their empowerment. This paper describes the co-design process of a vCoP for the empowerment of people with ischemic heart disease (IHD).<h4>Methods</h4>We used a modified experience-based design approach to co-design the vCoP in collaboration with people with IHD and health professionals consisting of two phases: exploratory and development phase. Da ...[more]
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Project description:IntroductionVirtual Communities of Practice (VCoP) or knowledge-sharing virtual communities offer ubiquitous access to information and exchange possibilities for people in similar situations, which might be especially valuable for the self-management of patients with chronic diseases. In view of the scarce evidence on the clinical and economic impact of these interventions on chronic conditions, we aim to evaluate the effectiveness and cost-effectiveness of a VCoP in the improvement of the activation and other patient empowerment measures in patients with ischaemic heart disease (IHD).Methods and analysisA pragmatic randomised controlled trial will be performed in Catalonia, Madrid and Canary Islands, Spain. Two hundred and fifty patients with a recent diagnosis of IHD attending the participating centres will be selected and randomised to the intervention or control group. The intervention group will be offered participation for 12 months in a VCoP based on a gamified web 2.0 platform where there is interaction with other patients and a multidisciplinary professional team. Intervention and control groups will receive usual care. The primary outcome will be measured with the Patient Activation Measure questionnaire at baseline, 6, 12 and 18 months. Secondary outcomes will include: clinical variables; knowledge (Questionnaire of Cardiovascular Risk Factors), attitudes (Self-efficacy Managing Chronic Disease Scale), adherence to the Mediterranean diet (Mediterranean Diet Questionnaire), level of physical activity (International Physical Activity Questionnaire), depression (Patient Health Questionnaire), anxiety (Hospital Anxiety Scale-A), medication adherence (Adherence to Refill Medication Scale), quality of life (EQ-5D-5L) and health resources use. Data will be collected from self-reported questionnaires and electronic medical records.Ethics and disseminationThe trial was approved by Clinical Research Ethics Committee of Gregorio Marañón University Hospital in Madrid, Nuestra Señora de Candelaria University Hospital in Santa Cruz de Tenerife and IDIAP Jordi Gol in Barcelona. The results will be disseminated through workshops, policy briefs, peer-reviewed publications, local/international conferences.Trial registration numberClinicalTrials.gov Registry (NCT03959631). Pre-results.
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Project description:BackgroundVirtual communities of practice (vCoPs) facilitate online learning via the exchange of experiences and knowledge between interested participants. Compared to other communities, vCoPs need to overcome technological structures and specific barriers. Our objective was to pilot the acceptability and feasibility of a vCoP aimed at improving the attitudes of primary care professionals to the empowerment of patients with chronic conditions.MethodsWe used a qualitative approach based on 2 focus groups: one composed of 6 general practitioners and the other of 6 practice nurses. Discussion guidelines on the topics to be investigated were provided to the moderator. Sessions were audio-recorded and transcribed verbatim. Thematic analysis was performed using the ATLAS-ti software.ResultsThe available operating systems and browsers and the lack of suitable spaces and time were reported as the main difficulties with the vCoP. The vCoP was perceived to be a flexible learning mode that provided up-to-date resources applicable to routine practice and offered a space for the exchange of experiences and approaches.ConclusionsThe results from this pilot study show that the vCoP was considered useful for learning how to empower patients. However, while vCoPs have the potential to facilitate learning and as shown create professional awareness regarding patient empowerment, attention needs to be paid to technological and access issues and the time demands on professionals. We collected relevant inputs to improve the features, content and educational methods to be included in further vCoP implementation.Trial registrationClinicalTrials.gov , NCT02757781 . Registered on 25 April 2016.
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Project description:PurposeWe aimed to evaluate the effectiveness of a virtual community of practice (vCoP) in improving primary health care professionals' (HCPs') attitudes toward empowering patients with chronic disease.MethodsWe conducted a cluster randomized controlled trial. Practices were units of randomization, and primary HCPs and patients were units of analysis. Sixty-three practices in Madrid, Catalonia, and the Canary Islands were randomly allocated to the intervention or control groups. Randominzation of practices was performed after HCP and patient recruitment. The patients and statistician were anonymized to group allocation; it was not possible to anonymize HCPs. The intervention was a 12-month multicomponent tailored vCoP built on the Web 2.0 concept and focused on skills toward patient empowerment. The primary outcome was Patient-Provider Orientation Scale (PPOS) score at baseline and at 12 months. The secondary outcome was the Patient Activation Measure (PAM) score.ResultsA total of 321 HCPs and 1,921 patients were assessed. The intervention had a positive effect on PPOS total score (0.14 points higher in the vCoP arm; 95% CI, 0.03-0.25; P = .011) and the PPOS Sharing subscale (0.3 points higher in the vCoP arm; 95% CI, 0.15-0.44; P < .001). No effect was found for the PPOS Caring subscale, and no significant differences were found for PAM scores.ConclusionsA vCoP led to a minor increase in the PPOS Sharing component and the total score but not in the Caring component. However, considerable uncertainty remains, given the observed attrition and other limitations of the study. Further research is needed on the effectiveness of the vCoP model and on how to improve HCP engagement.VISUAL ABSTRACT.
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Project description:Community empowerment interventions, which aim to build greater individual and community control over health, are shaped by the community systems in which they are implemented. Drawing on complex systems thinking in public health research, this paper discusses the evaluation approach used for a UK community empowerment programme focused on disadvantaged neighbourhoods. It explores design choices and the tension between the overall enquiry questions, which were based on a programme theory of change, and the varied dynamic socio-cultural contexts in intervention communities. The paper concludes that the complexity of community systems needs to be accounted for through in-depth case studies that incorporate community perspectives.
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Project description:BackgroundProfessional isolation is an important factor in low rural health workforce retention.ObjectiveThe aim of this study was to gain insights to inform the development of an implementation plan for a virtual community of practice (VCoP) for general practice (GP) training in regional Australia. The study also aimed to assess the applicability of the findings of an existing framework in developing this plan. This included ascertaining the main drivers of usage, or usefulness, of the VCoP for users and establishing the different priorities between user groups.MethodsA survey study, based on the seven-step health VCoP framework, was conducted with general practice supervisors and registrars-133 usable responses; 40% estimated response rate. Data was analyzed using the t test and the chi-square test for comparisons between groups. Factor analysis and generalized linear regression modeling were used to ascertain factors which may independently predict intention to use the VCoP.ResultsIn establishing a VCoP, facilitation was seen as important. Regarding stakeholders, the GP training provider was an important sponsor. Factor analysis showed a single goal of usefulness. Registrars had a higher intention to use the VCoP (P<.001) and to perceive it as useful (P<.001) than supervisors. Usefulness independently predicted intention to actively use the VCoP (P<.001). Regarding engagement of a broad church of users, registrars were more likely than supervisors to want allied health professional and specialist involvement (P<.001). A supportive environment was deemed important, but most important was the quality of the content. Participants wanted regular feedback about site activity. Regarding technology and community, training can be online, but trust is better built face-to-face. Supervisors were significantly more likely than registrars to perceive that registrars needed help with knowledge (P=.01) and implementation of knowledge (P<.001).ConclusionsImportant factors for a GP training VCoP include the following: facilitation covering administration and expertise, the perceived usefulness of the community, focusing usefulness around knowledge sharing, and overcoming professional isolation with high-quality content. Knowledge needs of different users should be acknowledged and help can be provided online, but trust is better built face-to-face. In conclusion, the findings of the health framework for VCoPs are relevant when developing an implementation plan for a VCoP for GP training. The main driver of success for a GP training VCoP is the perception of its usefulness by participants. Overcoming professional isolation for GP registrars using a VCoP has implications for training and retention of health workers in rural areas.
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Project description:BackgroundThe planet's population is aging at an incredible speed. Poor dietary practices are a major problem among the elderly. However, literature is scarce on dietary practices among elders in the study area. Therefore, the results of this study may give information to decision-makers.ObjectiveThis study aimed to assess dietary practices and associated factors among elderly people in Northwest Ethiopia, in 2022.MethodsA community-based mixed study design was employed among elderly people from May 20 to July 2, 2022. Systematic random sampling and purposive sampling techniques were used for selecting study participants in quantitative and qualitative studies, respectively. Data were collected using an interviewer-administered structured questionnaire for the quantitative part and an interview guide for the qualitative part. Binary logistic regression analysis was used. A P-value less than or equal to 0.05 was used to declare statistically significant variables. A crude odds ratio and an adjusted odds ratio with a 95% confidence interval were used to measure the strength of the association. Thematic analysis was used for qualitative data analysis.ResultsA total of 422 participants were recruited for the study. Twenty-six in-depth interviews were done. The prevalence of adequate dietary practice was only 54.5% [95% CI: (49.8, 59.2)]. It was significantly associated with being aged between 65 to 74 years (AOR: 8.32; 95 CI: 3.9, 18.1), being aged between 75 to 84 years (AOR: 2.90; 95% CI: 1.1, 7.9), eating sometimes alone (AOR: 1.86; 95% CI: 1.03, 3.4), eating always with family members (AOR: 4.96; 95% CI: 2.6, 9.4), and food security (AOR: 3.13; 95% CI: 1.8, 5.4). Thematic analysis revealed three themes that interfere with the dietary practices of elders. A majority of in-depth interviewees mentioned that there were taboos and cultural beliefs which favor inadequate dietary practices of the elderly; the study participants reported that individual, economic, societal, and physiological factors are barriers affecting the dietary practices of the elderly, and all respondents have no experiences regarding elderly dietary practices.ConclusionThe prevalence of adequate dietary practice was low. It was significantly associated with age, with whom feeding, and household food security status. Taboos and cultural beliefs, barriers, and experiences hampered the dietary practices of elders. Therefore, improving the dietary practices of elders focusing on advanced age, loneliness, food security, taboos, cultural beliefs, barriers, and experiences regarding dietary practices should be done.
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Project description:In Community-Based Participatory Research (CBPR), people with shared lived experiences (co-researchers) identify priority needs and work collaboratively to co-design an action-oriented research advocacy project. For this to occur, academic researchers must build mutually respectful partnerships with co-researchers by establishing trust. In the context of the COVID-19 pandemic, our objective was to virtually assemble a group of co-researchers (people with diverse but relevant experiences of homelessness and diabetes) and academic researchers who engaged in the CBPR process to identify a project that would address the difficulties of diabetes management while experiencing homelessness. Co-researchers were recruited to the committee from community homeless-serving organizations. Six co-researchers, one peer researcher and three academic researchers from Calgary, Alberta met virtually for bi-weekly committee meetings, from June 2021 to May 2022 to explore barriers to diabetes management and to complete a priority-setting exercise to determine the focus of our collective project. After reflecting on our virtual CBPR experience we present lessons learned related to: i) technical challenges and logistical considerations, ii) meeting virtually and building rapport, iii) driving engagement, and iv) challenges of transitioning from virtual to in-person meeting format. Overall, the process of conducting a CBPR project virtually to engage a group of co-researchers during a pandemic presents its challenges. However, a virtual CBPR project is feasible and can lead to meaningful experiences that benefit all group members, both from the community and academia.
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Project description:BackgroundCommunity participation is widely believed to be beneficial to the development, implementation and evaluation of health services. However, many challenges to successful and sustainable community involvement remain. Importantly, there is little evidence on the effect of community participation in terms of outcomes at both the community and individual level. Our systematic review seeks to examine the evidence on outcomes of community participation in high and upper-middle income countries.Methods and findingsThis review was developed according to PRISMA guidelines. Eligible studies included those that involved the community, service users, consumers, households, patients, public and their representatives in the development, implementation, and evaluation of health services, policy or interventions. We searched the following databases from January 2000 to September 2016: Medline, Embase, Global Health, Scopus, and LILACs. We independently screened articles for inclusion, conducted data extraction, and assessed studies for risk of bias. No language restrictions were made. 27,232 records were identified, with 23,468 after removal of duplicates. Following titles and abstracts screening, 49 met the inclusion criteria for this review. A narrative synthesis of the findings was conducted. Outcomes were categorised as process outcomes, community outcomes, health outcomes, empowerment and stakeholder perspectives. Our review reports a breadth of evidence that community involvement has a positive impact on health, particularly when substantiated by strong organisational and community processes. This is in line with the notion that participatory approaches and positive outcomes including community empowerment and health improvements do not occur in a linear progression, but instead consists of complex processes influenced by an array of social and cultural factors.ConclusionThis review adds to the evidence base supporting the effectiveness of community participation in yielding positive outcomes at the organizational, community and individual level.Trial registrationProspero record number: CRD42016048244.
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Project description:BackgroundGames are increasingly used in eHealth as a strategy for user engagement. There is an enormous diversity of end users and objectives targeted by eHealth. Hence, identifying game content that drives and sustains engagement is challenging. More openness in the game design process and motivational strategies could aid researchers and designers of future game-based apps.ObjectiveThis study aims to provide insights into our approach to develop game-based eHealth in practice with a case study (Personalised ICT Supported Services for Independent Living and Active Ageing [PERSSILAA]). PERSSILAA is a self-management platform that aims to counter frailty by offering training modules to older adults in the domains of healthy nutrition and physical and cognitive training to maintain a healthy lifestyle. We elaborate on the entire game design process and show the motivational strategies applied.MethodsWe introduce four game design phases in the process toward game-based eHealth: (1) end-user research, (2) conceptualization, (3) creative design, and (4) refinement (ie, prototyping and evaluations).ResultsFirst, 168 participants participated in end-user research, resulting in an overview of their preferences for game content and a set of game design recommendations. We found that conventional games popular among older adults do not necessarily translate well into engaging concepts for eHealth. Recommendations include focusing game concepts on thinking, problem-solving, variation, discovery, and achievement and using high-quality aesthetics. Second, stakeholder sessions with development partners resulted in strategies for long-term engagement using indicators of user performance on the platform's training modules. These performance indicators, for example, completed training sessions or exercises, form the basis for game progression. Third, results from prior phases were used in creative design to create the game "Stranded!" The user plays a person who is shipwrecked who must gather parts for a life raft by completing in-game objectives. Finally, iterative prototyping resulted in the final prototype of the game-based app. A total of 35 older adults participated using simulated training modules. End users scored appreciation (74/100), ease of use (73/100), expected effectivity and motivation (62/100), fun and pleasantness of using the app (75/100), and intended future use (66/100), which implies that the app is ready for use by a larger population.ConclusionsThe study resulted in a game-based app for which the entire game design process within eHealth was transparently documented and where engagement strategies were based on extensive user research. Our user evaluations indicate that the strategies for long-term engagement led to game content that was perceived as engaging by older adults. As a next step, research is needed on the user experience and actual engagement with the game to support the self-management of older adults, followed by clinical studies on its added value.
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Project description:BackgroundPeople living with psychosis face a substantially increased risk of poor psychological well-being and physical health and premature mortality. Encouraging positive health behaviors from an early stage is crucial to the health and well-being of this population but is often overshadowed by symptom management within early intervention services.ObjectiveExperience-based co-design is a participant-centered approach that aims to combine service user narratives with service design methods to design systems of support for health and well-being. This study aims to use experience-based co-design principles to co-design a system that supports the health and well-being of young people experiencing first-episode psychosis (FEP), which considers the lived experience of these people within the context of early intervention services. We also aim to develop a set of principles to guide future systems to support the health and well-being of young people experiencing FEP.MethodsUp to 15 young people living with FEP aged 16 to 24 years who are service users of early intervention services in psychosis, their immediate support networks (family or friends), and health professionals involved with early intervention services in psychosis will be invited to participate in a series of co-design workshops. Data will be collected in various forms, including expressive forms (eg, art and spoken word) and traditional methods (interview transcription and surveys), with phenomenographic and thematic analyses being used to understand these data. Furthermore, the co-design process will draw upon indigenous (Māori) knowledge and the lived experience of mental health services from the perspectives of the members of the research team. The co-design process will be evaluated in terms of acceptability from the perspective of service users via rating scales and interviews. The study will be conducted within the Lower North Island in Aotearoa New Zealand.ResultsData collection will be performed between August 2022 and February 2023. Drawing from extended consultations with service users and service providers, we have developed a robust co-design process with which we intend to collect rich qualitative and quantitative data. The results of this process will be used to create a system of support that can be immediately applied and as preliminary evidence for funding and resource applications to deliver and evaluate a "full" version of the co-designed system of support.ConclusionsThe co-designed system of support and accompanying set of principles will offer a potentially impactful health and well-being intervention for young people experiencing FEP in Aotearoa New Zealand. Furthermore, making the co-design process transparent will further the field in terms of providing a blueprint for this form of participant-focused research.Trial registrationAustralian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12622001323718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=384775&isReview=true.International registered report identifier (irrid)DERR1-10.2196/44980.
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