Journal of Participatory Medicine最新文献

Background: The rise of major complex public health problems, such as vaccination hesitancy and access to vaccination, requires innovative, open, and transdisciplinary approaches. Yet, institutional silos and lack of participation on the part of nonacademic citizens in the design of solutions hamper efforts to meet these challenges. Against this background, new solutions have been explored, with participatory research, citizen science, hackathons, and challenge-based approaches being applied in the context of public health.

Objective: Our aim was to develop a program for creating citizen science and open innovation projects that address the contemporary challenges of vaccination in France and around the globe.

Methods: We designed and implemented Co-Immune, a program created to tackle the question of vaccination hesitancy and access to vaccination through an online and offline challenge-based open innovation approach. The program was run on the open science platform Just One Giant Lab.

Results: Over a 6-month period, the Co-Immune program gathered 234 participants of diverse backgrounds and 13 partners from the public and private sectors. The program comprised 10 events to facilitate the creation of 20 new projects, as well as the continuation of two existing projects, to address the issues of vaccination hesitancy and access, ranging from app development and data mining to analysis and game design. In an open framework, the projects made their data, code, and solutions publicly available.

Conclusions: Co-Immune highlights how open innovation approaches and online platforms can help to gather and coordinate noninstitutional communities in a rapid, distributed, and global way toward solving public health issues. Such initiatives can lead to the production and transfer of knowledge, creating novel solutions in the public health sector. The example of Co-Immune contributes to paving the way for organizations and individuals to collaboratively tackle future global challenges.

Background: Shared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs.

Objective: The goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity.

Methods: We interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context.

Results: Parents of CMCs in our study made decisions based on a mental model of their child's illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions.

Conclusions: Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child's unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values.

Background: An increase in the demand for child participation in health care requires tools that enable and empower children to be involved in the co-production of their own care. The development of such tools should involve children, but participatory design and research with children have challenges, in particular, when involving children with disabilities where a low level of participation is the norm. Norm-creative and participatory approaches may bring more effective design solutions for this group. "Personas" is a methodology for increasing user perspectives in design and offers representation when users are absent. However, research on participatory persona generation in this context is limited.

Objective: The objective of this study was to investigate how norm-creative and participatory design approaches can be integrated in a persona generation method to suit children with disabilities in the design of games for health that target this group.

Methods: The method development involved interview transcripts and image-based workshops. Sixteen children with various disabilities participated in persona generation through co-creation of characters and scenarios. The results from the workshops were validated together with 8 children without disabilities, 1 young adult with a disability, and 1 rehabilitation professional. A qualitative thematic design analysis was iterated throughout the process.

Results: The results consisted of an image-based and iterative co-construction method. It was accompanied by examples of personas that were generated and validated within a games for health case. The method showed effectiveness in enabling flexible co-construction and communication. The data resonated with social model perspectives, and the development is discussed in terms of participation levels, salutogenic descriptions of barriers, and norm-creative tradeoffs.

Conclusions: The resulting method may influence future design projects toward more inclusiveness and enable increased representation for children with disabilities in research and design. Using this method to its full potential requires a norm-critical awareness as well as extensive facilitation. Suggestions for further research include the application of the method to design processes in similar contexts or user groups.

Background: As an important transition stage in human development, adolescence is a critical window for vaping prevention. There is a substantial gap in communication research on vaping prevention among racial and ethnic minority groups. Their representation is essential to develop, implement, and disseminate innovative and effective interventions for vaping prevention.

Objective: The aim of this study is to describe the participatory research (PR) procedures used with Black and Latino adolescents to develop culturally and linguistically appropriate graphic messages for vaping prevention.

Methods: This PR study used a qualitative, user-centered design method. We conducted a series of focus groups with 16 Black and Latino adolescents to develop culturally and linguistically appropriate graphic messages for vaping prevention. The biobehavioral model of nicotine addiction provided a framework for the development of the graphic messages. Participants met 4 times to provide iterative feedback on the graphic messages until they reached a consensus on overall quality and content.

Results: At baseline, the participants' mean age was 15.4 years (SD 1.4). Of the participants, 50% (8/16) were female, 88% (14/16) were heterosexual, 56% (9/16) were Black/African American, and 44% (7/16) were Hispanic/Latino. A total of 12 of the 16 participants (75%) chose to participate in the English sessions. Participants decided to create four types of graphic messages: (1) financial reward, (2) health reward, (3) social norms, and (4) self-efficacy. Meeting 4 times with the 4 groups provided sufficient opportunities for iterative feedback on the graphic messages to reach a consensus on overall quality and content.

Conclusions: It is feasible and practical to build PR among Black and Latino adolescents focused on vaping prevention. Adolescents added innovation and creativity to the development of culturally and linguistically appropriate graphic messages for vaping prevention. Appropriate staffing, funding, and approaches are key for successful PR efforts among Black and Latino adolescents. Future research is needed to evaluate the impact of the graphic messages on vaping prevention.

Background: Engaging patients and the public in clinical practice guideline (CPG) development is believed to contribute significantly to guideline quality, but the advantages of the various co-design strategies have not been empirically compared, making it difficult to choose one strategy over another.

Objective: This pilot study aims to document the acceptability, feasibility, and outcomes of 2 methods of involving patients in outlining CPG.

Methods: A single-blind crossover pragmatic study was performed with patients with traumatic brain injury. The patients experimented with 2 alternative methods of producing clinical practice recommendations (ie, a discussion group and a wiki). The participants rated the acceptability of the 2 methods, and feasibility was assessed using indicators, such as the number of participants who completed the 2 methods and the number of support interventions required. Experts, blinded to the method, independently rated the participants' outcome recommendations for clarity, accuracy, appropriateness, and usefulness.

Results: We recruited 20 participants, and 16 completed the study. The acceptability of the 2 methods showed little variation, with qualitative comments expressing a slight preference for the social nature of focus groups. Thus, both methods of involving patients in CPG development appeared feasible, and the experts' opinions of the adapted recommendations were both positive, although the recommendations produced through focus groups were deemed more relevant to support clinical practice.

Conclusions: Our results confirm the acceptability and feasibility of focus groups and wikis to allow patients with traumatic brain injury to participate in clinical practice guideline production. This study contributes to the scientific literature by suggesting that the 2 methods were acceptable, feasible, and produced positive outcomes.

Trial registration: ClinicalTrials.gov NCT02023138; https://clinicaltrials.gov/ct2/show/NCT02023138.

[This corrects the article DOI: 10.2196/23011.].

Background: Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews.

Objective: This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts, or article text.

Methods: We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), Embase (Ovid), MEDLINE (Ovid), and PsycInfo from 2011 to May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results and searched Ovid MEDLINE using the modified search strategy in June 2020.

Results: We screened 13,998 results and found 37 studies that met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors' roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often only indicated in the author affiliation field or in the review text (most often in the methods or contributions section).

Conclusions: Our findings add to the evidence that searching for coproduced research is difficult because of the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

Background: Co-production of health and care involving patients, families of patients, and professionals in care processes can create joint learning about how to meet patients' needs. Although barriers and facilitators to co-production have been examined previously in various health care contexts, the preconditions in Swedish chronic cardiac care contexts are yet to be explored. This study is set in the health system of the Swedish region of Jönköping County and is part of system-wide efforts to promote better health for persons with heart failure (HF).

Objective: The objective of this study was to test the usefulness of the Capability, Opportunity, and Motivation Behavior (COM-B) model when assessing the barriers to and facilitators of co-production of health and care perceived by patients with HF, family members of patients with HF, and professionals in a Swedish chronic cardiac care context as a guide for subsequent initiatives.

Methods: Data collection involved 1 focus group interview (FGI) with patients with HF (n=5), 1 FGI with family members of patients with HF (n=5), 1 FGI with professionals in primary care (n=7), and 1 FGI with professionals in cardiac care (n=4). In addition, patients with HF kept diaries of their thoughts regarding co-production. Using a deductive approach to content analysis, underpinned by the COM-B model, barriers and facilitators were categorized into capabilities, opportunities, and motivations to co-produce health and care.

Results: The participants showed limited understanding of co-production as a practice. They appeared to view it as a privilege to be offered to patients on top of traditional care and rarely as an approach for improving health care processes. The interviews revealed the limited health literacy among patients and the struggle of professionals to convey health information to these patients. Co-production was considered to be more resource-intensive than traditional care. Different expectations of stakeholders' roles were revealed: professionals expected older patients not to want to co-produce health and care, and all participants expected professionals to be in charge of health care services. The family members' position involved trying to balance their desire to support their relatives with understanding when, how, and with whom to co-produce. Presumed benefits motivated stakeholders: co-production was recognized to motivate patients to improve self-care. However, the participants recognized that motivation to get involved in health and care decisions varies over time among stakeholders.

Conclusions: Co-production can be facilitated by the stakeholders' motivation. However, varying levels of understanding of co-production, patients' limited health literacy, unease with power sharing between patients and professionals, and resource constraints are barriers that need to be managed to p