What matters to you? Public and patient involvement in the design stage of research.

BACKGROUND: Public and patient involvement is critical to ensure that research is relevant and addresses what matters most to the person through co-production. Involvement at the design stage where ideas for research are developed prior to formal ethical approval, can positively influence the direction of research design, methods, and outcomes. Although ethical approval is not required at this stage, being ethically conscious is imperative to prevent unwarranted unethical practices. To ensure this, the public and patient intervention at the design stage of a doctoral research project was benchmarked against Pandya-Woods 10 ethically conscious standards and the INVOLVE values and principles framework. Ethical approval was also gained for publication. MAIN BODY: Patient and public involvement was undertaken with two diverse patient and public groups as an agenda item in their regular Teams meeting. Thoughts on the research project, the timeline, what matters most to the individuals in the group with regarding the design and outcomes from the research, the best method for data collection for public research, and next steps were discussed. CONCLUSION: Public and patient involvement had a positive influence on the design and outcomes of a doctoral research proposal and held the researcher accountable for impact of the research on the public. Positive changes to the research from working with public and patients exploring 'what matters to you' included: An ontological change in the way that the research was conducted, identification of some main themes to run as a thread throughout the research, development of content for an international scoping review, identification of the best method for data collection for patient research, and accountability of the researcher to write a plain English summary at the beginning of each thesis chapter, and a summary report at the end for dissemination.

Public and patient involvement (PPI) is encouraged at every stage of research to make sure that research is relevant, and addresses what matters most to the person by working together as equal partners . This commentary reflects on how PPI at the beginning of a research idea can positively influence the design, methods, and outcomes of the research. This stage of research is known as the 'design phase'. It is important that although ethical approval is not needed for this phase, that the researcher acts in an ethically conscious way. The doctoral research 'What factors and influences demonstrate quality and impact of the Southeast Consultant development Programme?' commented on in this paper, has been mapped against some standards and has gained ethical approval for publication.Two public and patient groups (PPG) were approached to be involved in the design phase of this research as an agenda item in their regular meeting. The PPG lead sent an involvement information sheet and consent form prior to the meeting to aid decision making whether to attend or not. Those involved could leave at any point and all discussion was anonymised.The PPI positively influenced the research in the following ways: A change in the way that the research was conducted. Identification of main themes to be addressed based on 'what matters to me'. Development of content for an international scoping review. The best method for patient research. Accountability held of the researcher to write a plain English summary at the beginning of each thesis chapter and a summary report at the end.

How can patients shape digital medicine? A rapid review of patient and public involvement and engagement in the development of digital health technologies for neurological conditions.

INTRODUCTION: Patient and Public Involvement and Engagement (PPIE) involves working 'with' or 'by' patients and the public, rather than 'to,' 'about,' or 'for' them, and is integral to neurological and digital health research. This rapid review examined PPIE integration in the development and implementation of digital health technologies for neurological conditions. METHODS: Key terms were input into six databases. Included articles were qualitative studies or PPIE activities involving patient perspectives in shaping digital health technologies for neurological conditions. Bias was evaluated using the NICE qualitative checklist, with reporting following PRISMA guidelines. RESULTS: 2,140 articles were identified, with 28 included. Of these, 25 were qualitative studies, and only three were focused PPIE activities. Patient involvement was mostly limited to one-off consultations during development.There was little evidence of PPIE during implementation, and minimal reporting on its impact. CONCLUSIONS: PPIE has been inconsistently reported in this research area, highlighting the need for more guidance and best-practice examples This review used a UK-based definition of PPIE, which may have excluded relevant activities from other countries. Future reviews should broaden terminology to capture PPIE integration globally.

The Relationship Between Facilitation of Patient Involvement and Self-Perceived Burden in Postoperative Lung Cancer Patients: The Mediating Role of Social Support.

Aim: Patients with lung cancer often experience a high level of self-perceived burden, which significantly affects their quality of life and psychological health. Social support is closely related to the self-perceived burden, yet there is scant research on the relationship between social support, facilitation of patient involvement, and self-perceived burden. This study aims to understand the current situation of self-perceived burden in postoperative lung cancer patients and to explore the mediating role of social support between facilitation of patient involvement and self-perceived burden. Methods: A cross-sectional design was used in this study. Using a convenience sampling method, a total of 331 lung cancer patients who were hospitalized for surgical treatment at a tertiary cancer hospital in Beijing, China, from August 2022 to May 2023, were selected to participate in this survey. The survey included a self-designed sociodemographic questionnaire, the Facilitation of Patient Involvement Scale (FPIS), the Perceived Social Support Scale (PSSS), and the Self-Perceived Burden Scale (SPBS). Data were analyzed using SPSS 24.0 for statistical description and Pearson correlation analysis, while AMOS 24.0 was utilized to construct a structural equation model to examine the mediation effect. Results: The score of self-perceived burden in lung cancer patients was 26.42 ±8.23 points. Bot facilitation of patient involvement and social support was negatively correlated with self-perceived burden (r = -0.313, r = -0.332, P < 0.001). Social support plays a partially mediated role in the relationship between facilitation of patient involvement and self-perceived burden, accounting for 44.3% of the total effect. Conclusion: The self-perceived burden of patients after lung cancer surgery was at a moderate level, and social support partially mediates the relationship between facilitation of patient involvement and self-perceived burden. Medical staff should encourage patient participation in their own treatment decisions and alleviate the burden associated with lung cancer and surgical treatment by enhancing their social support.

Emotional and psychological safety in the context of digital transformation in healthcare: a mixed-method strategic foresight study.

BACKGROUND: Perceived safety has received attention in the digital transformation of healthcare. However, the impact of perceived safety on the future of digital transformation has not been fully elucidated. AIM: To investigate perceived safety in the context of the digital transformation of healthcare while considering relevant needs, influencing factors and impacts, including crisis events, to provide recommendations for action based on a participatory, multiperspective, strategic 5-year foresight viewpoint. METHODS: A strategic foresight study is conducted via a participatory mixed-methods design to understand the present related factors that are likely to be relevant to future developments in the digital transformation of healthcare. RESULTS: We observed that feeling safe plays a complex role in the digital transformation of healthcare. How perceived safety is considered has and will continue to impact the individual, organisational and system levels. Regarding a potential crisis event, controversial consequences have been observed. At its core, digital (health) literacy related to equity of access and human support is one of the crucial aspects in the context of perceived safety related to the successful implementation of digital technologies in healthcare. CONCLUSIONS: The scenarios showed that a continuation of the current situation over the next 5 years may result in partly desirable and partly undesirable outcomes. Concrete key factors should be used in practice to support both education and healthcare quality development and research. The essence of the scenarios should serve as a starting point for research agenda setting and political decision-making in the future. However, additional research is needed to quantify the correlations among the relevant factors.

A Patient and Public Engagement Project to Inform Dementia Care in a UK Hospital Trust.

INTRODUCTION: The increasing prevalence of dementia in the United Kingdom presents significant challenges for healthcare, with projections estimating over a million affected individuals by 2025, costing the NHS £6.3 billion annually. Hospital admissions among dementia patients are common, occupying about 25% of UK hospital beds and leading to prolonged stays and diminished health outcomes. METHOD: This paper presents the opening stages, part of a larger project where Patient and Public Involvement and Engagement (PPIE) was employed to understand and navigate what it means for hospital care for a person living with dementia. To understand hospital care for dementia patients, focus groups were conducted through dementia cafés in Essex and Suffolk from February to July 2023 engaging patients, carers and family members. RESULTS: Recognised processes for reporting PPIE and thematic analysis were used and identified six themes and 21 subthemes regarding hospital care: individualised care, role of carers, basic care, interpersonal communication, information sharing and staffing. DISCUSSION: The results from the PPIE will be used to inform and work with stakeholders through the next phases of the project, which involves examining care processes in the hospital, identifying touchpoints and evaluating these areas. The project continues to be informed by stakeholders including people living with dementia, carers and staff. Additionally, the results may inform other service providers for care enhancements, processes and delivery. CONCLUSION: Moving forward, the study emphasises the importance of building collaborative relationships with stakeholders involved in dementia care. Additionally, it provides insights to focus areas that are fundamental for acute care organisations when delivering care to people living with dementia. By incorporating insights from PPIE, this project seeks to identify inequalities in dementia care services, improve hospital care for people living with dementia, fostering a more inclusive and supportive healthcare environment. PATIENT OR PUBLIC CONTRIBUTION: The purpose of the study was to explore the most important issues around hospital care for people with dementia, their carers and families. Persons living with dementia, carers and family members were involved in the study through community dementia cafés and recruited to take part in focus groups to discuss hospital care for patients with dementia. The design of questions and materials for the discussions was developed through consultation with the university department's service user lead and dementia specialist and reviewed by a service user member living with dementia. A pilot focus group was conducted with a group of carers. We worked with the dementia café managers to coordinate recruitment and a suitable environment to run the focus groups. TRIAL REGISTRATION: Not applicable.

Patient perspectives on adverse event investigations in health care.

BACKGROUND: Over the last decade attention has grown to give patients and next of kin (P/N) more substantial roles in adverse event investigations. Adverse event investigations occur after adverse events that resulted in death or severe injury. Few studies have focused on patient perspectives on their involvement in such investigations. The present study sets out to investigate how P/N and patient representatives (client councils and the Patient Federation Netherlands) view the involvement of P/N in adverse event investigations, particularly whether and why they want to involved, and how they want to shape their involvement. METHODS: The study features qualitative data on three levels: interviews with P/N (personal), focus groups with representatives of client councils (institutional), and an interview with the Patient Federation Netherlands (national). Researchers used inductive, thematic analysis and validated the results through data source triangulation. RESULTS: The initiative taken by the hospitals in this study provided P/N with the space to feel heard and a position as legitimate stakeholder. P/N appreciated the opportunity to choose whether and how they wanted to be involved in the investigation as stakeholders. P/N emphasized the need for hospitals to learn from the investigations, but for them the investigation was also part of a more encompassing relationship. P/N's views showed the inextricable link between the first conversation with the health care professional and the investigation, and the ongoing care after the investigation was finalized. Hence, an adverse event investigation is part of a broader experience when understood from a patient perspective. CONCLUSIONS: An adverse event investigation should be considered as part of an existing relationship between P/N and hospital that starts before the investigation and continues during follow up care. It is crucial for hospitals to take the initiative in the investigation and in the involvement of P/N. P/N motivations for involvement can be understood as driven by agency or communion. Agentic motivations include being an active participant by choice, while communion motivations include the need to be heard.

Graphic Paper: Empowering refugee families in transit: the development of a culturally competent and compassionate training and support package.

Background: Refugee parents who fled conflicts suffered violence and traumas and face huge challenges in supporting the health and welfare of their children while in transit. Aims: To describe the development of a culturally competent and compassionate training and support package (TSP) for nurses, social and healthcare workers and volunteers, with a focus on parenting needs among unsettled refugees fleeing conflict. Methods: The multi-method approach included: a scoping review covering parenting needs of refugees fleeing conflict zones; collection of stories from refugee parents, healthcare workers and volunteers via a mobile application; discussions between team members; a piloted and evaluated curriculum. Results: High levels of family distress and deterioration of parental identity were identified. Informed by these results, the curriculum is articulated along 20 bite-sized learning units, covering four age stages of childhood as well as targeting adults' well-being. Pilot training was evaluated positively, confirming feasibility and usefulness of the TSP. Conclusions: Unsettled refugee parents fleeing conflicts face psycho-social and practical difficulties negatively affecting their parenting skills. The care workforce should be trained in order to provide culturally competent and compassionate support to help these families. Open access digital platforms are promising as autodidactic and self-help tools among hard-to-reach populations.

Relationship Between Patients' "Sense of Participation" in Healthcare and Their Satisfaction A Survey of 5 Hospitals.

Patient participation is considered important for the safety and quality of care. The patient's perception of actually being able to participate in healthcare, namely, the sense of participation, may influence patient satisfaction (PS). This study aimed to quantitatively determine the relationship between sense of participation to healthcare and PS. A questionnaire survey was conducted among 100 inpatients from each of the 5 target hospitals. The questionnaire included 6 PS items and 4 patient achievement goals, which were indicators of whether the patients had a sense of participation. The response rate was 60.6% (303/500). Patients who perceived that they could choose a treatment that reflected their values and wishes had significantly higher scores on all PS items. Patients who achieved the goal of "I want to be a member of the medical team and participate actively in treatment and safety activities" showed significantly higher PS related to coping to reduce pain and symptoms. Additionally, patients who achieved the goal of "I believe I am able to voluntarily learn about the disease/treatment and use it to make decisions" had significantly higher PS related to psychological support. Sense of participation may improve PS in a wide range of areas. Hospitals and healthcare workers are expected to empower patients to develop a sense of participation.

The active involvement of patients in oncology research.

The aim of this review is to provide an overview of the status of patient/public involvement (PPI) in oncology research, including definitions, regulatory aspects, ongoing clinical activities in different countries, achievements and difficulties. The 10-year activities of the Swiss Group for Clinical Cancer Research (SAKK) Patient Advisory Board are described, illustrating challenges faced and solutions in daily practice. Even though clinical data are still limited, it appears PPI has great potential for development in oncology. The drive for precision medicine, activities of patient organizations, pharmaceutical industry interest, and strong support from regulatory agencies, are facilitators to integration of PPI throughout the drug development process. Despite the availability of guidance documents providing recommendations for the implementation of PPI, lack of human and structural resources, training for patients / caregivers and healthcare personnel, and lack of collaboration among stakeholders are some of the main barriers reported. More rigorous reporting of PPI in clinical studies is needed, including the methods to evaluate the impact of PPI and in the representation of patients as partner.

Patients' experiences of involvement at a clinical training ward: a qualitative interview study.

Interprofessional education aims to foster healthcare students' ability to collaborate in interprofessional teams with the patients at the center of care as active participants. However, little is known about how patients experience this collaboration. Therefore, this study aimed to explore patients' experiences of being involved in the interprofessional team of healthcare students at a clinical training ward in Sweden. A descriptive design with a qualitative approach was used. Data were collected through semi-structured individual interviews with 22 patients. Braun and Clarke's reflexive thematic analysis was used. The main finding was that patients were only included as passive participants. Although most patients wanted to be involved, they were hindered due to their health condition or excluded from care planning and decision-making. The patients needed family members' support to be involved. However, this need was not recognised by the interprofessional team of healthcare students. Patient involvement must be highlighted as an important component of interprofessional education initiatives. Further research is needed to explore family members' perspectives on involvement in interprofessional training ward settings.

From Innovator Result-driven to Multi-actor Impact-oriented Public-Private Partnerships: Integrating the Patient Perspective.

Public-Private Partnerships (PPPs) have been crucial in medicine research and development (R&D) for decades. Initially, PPPs involved private and academic innovators working in bilateral collaborations to advance pharmaceutical innovation. Later, a precompetitive open innovation environment was created, where multiple public and private innovators collaborated on mutual interests. The entry of regulators and patient interest organizations into PPPs has triggered a third shift from an innovator result-driven to a multi-actor impact-oriented partnership model. Using the second Innovative Medicines Initiative program (IMI2) as an example, this chapter focuses on the increasing roles of patient interest organizations in PPPs in roughly the last decade.Most IMI2 partnerships focused on raising awareness and sharing information tailored to patient needs (listener role) and inviting patients to share their experiences and needs (co-thinker role). Many partnerships also integrated the patient perspective by implementing patient advisory bodies (advisor role) or including patients as equal partners in steering the project (partner role). Notably, partnerships like EUPATI and PARADIGM showed that patient interest organizations can lead initiatives, especially those aiming at advancing patient engagement across the medicine R&D lifecycle (decision-maker role). While the overall impact of patient involvement in the IMI2 program is still being assessed, it has exposed many innovators and regulators to the patient perspective and created a community of patient experts with access to tools and guidelines for meaningful involvement.The PPP model continues to evolve, shifting from a treatment-only to a comprehensive diagnosis, treatment, and monitoring approach by incorporating digital and medical technology actors. This development, alongside continued patient and public integration could revolutionize the R&D and accessibility of new treatments and diagnostics.

Patient perspectives on climate friendly healthcare: an exploratory study in obstetrics and gynaecology.

OBJECTIVE: To investigate patient perspectives on climate change and climate change mitigation strategies in healthcare. METHODS: A cross-sectional survey among gynaecological patients from two Dutch outpatient clinics. Main outcomes included patients' climate-related knowledge and worry, climate friendly healthcare perspectives and willingness to opt for climate friendly treatment alternatives. Multivariable linear regression analyses were performed to explore patient characteristics associated with climate friendly healthcare perspectives. RESULTS: 274 surveys were included. Most patients (79 %) were worried about climate change. Although almost all (91 %) found it important to contribute to climate protection, patients showed hesitance regarding healthcare measures that would impinge on individual choices. 62 % was willing to opt for climate friendly treatments, but this proportion varied by medical condition. Climate-related knowledge and worry were both positively associated with climate friendly healthcare perspectives. CONCLUSION: Gynaecological patients are concerned about climate change and possess substantial self-reported climate-related knowledge. Patients vary in their support of climate action that involves individual patient care, but the majority is open to choose climate friendly treatment alternatives for certain medical conditions. PRACTICE IMPLICATIONS: This exploratory study holds implications for the feasibility of integrating climate impact into clinical decision-making and provides a foundation for normative evidence for decarbonizing healthcare.

Introducing patient stories in health sciences education: the learning experiences of students.

BACKGROUND: It has been advocated that the development of medical school curricula must be informed by students, doctors in training, educators, employers, other health and social care professionals and patients, families and carers. Patients are widely employed to teach clinical and interpersonal skills, and while recognised as crucial in health education, they have mostly been offered a passive role. We assessed the impact of patients contributing personal illness narratives in the master curriculum of allied health care professionals on students' learning experiences. METHODS: We designed a module (Patient and Society) for a master's degree programme in Health Sciences at the University of Southern Denmark in collaboration with six patients. The patients contributed to the teaching by sharing and discussing their personal illness narrative. At the end of the module, as part of the exam, we asked the students to reflect on the patients' contribution to the module and how this affected their learning experiences. The 500-word exam responses of 29 students were analysed, in collaboration with six patients, using thematic analysis. RESULTS: Including patients' illness narratives lifted students' academic learning, and their personal and professional development. The stories brought theoretical concepts to life; it helped the students to obtain, retain, and apply academic knowledge. Actively and uninterrupted listening to patients' illness experiences promoted empathy and critical reflection on clinical practice. Faced with the impact of a disease on a person's life, seeing the healthcare system through a patient's lens made students reflect critically on the medical positivist model ruling the health care system focused on just fixing the medical problem with very little room for the illness experience. CONCLUSION: Our analyses support previous findings indicating that patient narratives are a powerful tool to achieve academic and professional development. Working with patients in health education has the potential to work towards a more inclusive epistemological stance in the health care system and health research.

Evaluating patient participation in value-based healthcare: Current state and lessons learned.

INTRODUCTION: Value-based healthcare (VBHC) focusses on increasing value for patients. Hospitals aim to implement VBHC via value improvement (VI) teams for medical conditions. To determine the patient's perspective on value, collective patient participation is important in these teams. We therefore evaluated the current state of patient participation in VI teams and share lessons learned. METHODS: This mixed-methods study was conducted at seven collaborating hospitals in the Netherlands. A questionnaire (the public and patient engagement evaluation tool) was tailored to the study's context, completed by VI team members (n = 147 from 76 different VI teams) and analysed with descriptive statistics. In addition, 30 semistructured interviews were held with VI team members and analysed through thematic analysis. Data were collected between February 2022 and January 2023 and were triangulated by mapping the quantitative results to the interview themes. RESULTS: Thirty-eight of the 76 included VI teams reported using a form of patient participation. Many respondents (71%) indicated a lack of a clear strategy and goal for patient participation. Multiple VI team members believed that specific knowledge and skills are required for patients to participate in a VI team, but this led to concerns regarding the representativeness of participating patients. Furthermore, while patients indicated that they experienced some level of hierarchy, they also stated that they did not feel restricted hereby. Lastly, patients were satisfied with their participation and felt like equal VI team members (100%), but they did mention a lack of feedback from the VI team on their input. CONCLUSION: The results imply the lack of full implementation of patient participation within VI teams. Guidelines should be developed that provide information on how to include a representative group of patients, which methods to use, how to evaluate the impact of patient participation, and how to give feedback to participating patients. PATIENT AND PUBLIC CONTRIBUTION: Two patient advisors were part of the research team and attended the research team meetings. They were involved as research partners in all phases of the study, including drafting the protocol (e.g., drafting interview guides and selecting the measurement instrument), interpreting the results and writing this article.

Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey.

INTRODUCTION: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one-time honorarium, salary) and amount. Further, broad-based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation. METHODS: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self-identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open-text comments in addition to menu-based and scaled response options. Basic frequencies were performed for all questions and open-text comments were analyzed through inductive qualitative content analysis. RESULTS: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open-text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships. CONCLUSIONS: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts. PATIENT CONTRIBUTION: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co-authors of this manuscript. The survey was co-designed and pilot tested with patient partners and survey participants were patient partners.

An umbrella review of reviews on challenges to meaningful adolescent involvement in health research.

BACKGROUND: Less than 1% of studies on child and adolescent health report the involvement of adolescents in health research. This is attributed to barriers experienced by researchers and adolescents in the engagement process. To address this under-involvement of adolescents, we first need a better understanding of the factors that hinder adolescent involvement in health research. OBJECTIVE: We conducted an umbrella review of reviews to consolidate the review-level evidence on the barriers to meaningful involvement of adolescents in health research. METHODS: We preregistered this umbrella review of reviews with PROSPERO (CRD42021287467). We searched 11 databases; Google Scholar; and PROSPERO; supplemented by a hand search of the reference lists of eligible reviews, relevant journals, websites of 472 organisations, and input from experts. This resulted in the inclusion of 99 review articles exploring adolescent involvement in studies on adolescent physical or mental health, which were narratively synthesised. Adolescent coresearchers were engaged at all stages of the review. RESULTS: We found that adolescent involvement in health research is impeded by several challenges experienced by researchers and adolescents. Some challenges experienced by researchers were organisational issues which included limited resources, gatekeeping and paying adolescents. Some barriers were related to a lack of preparedness among researchers and included a lack of awareness of adolescent involvement, the need for training and guidance, and negative attitudes towards participatory research. There were also barriers around how adolescents can be involved, such as researchers finding it challenging to adapt to new methods, issues with recruitment and retention of adolescents, inclusiveness and accessibility. There were also challenges specific to adolescents, such as adolescents' skills and expertise, training, motivations and study goals. Finally, barriers related to the ethical involvement of adolescents included issues with power dynamics, confidentiality, safety and protection of adolescents. Some of the barriers reported by adolescents included tokenistic involvement, inaccessibility of adolescent involvement, and their competing demands. CONCLUSION: Researchers may find this review useful in understanding and planning for potential challenges of involving adolescents in research. Despite many identified barriers to adolescent engagement, few mitigation strategies were identified to address these barriers. There is a clear need to establish best practices for meaningful adolescent involvement in health research. PUBLIC AND PATIENT INVOLVEMENT IN THE REVIEW: Adolescents were involved at multiple stages of this umbrella review of reviews. They reviewed the protocol, screened 25% of the articles at title and abstract screening stage, screened 10% of full-text articles, and worked on data analysis. They also helped plan and conduct a participatory workshop with an adolescent advisory group to discuss the challenges experienced by adolescents in health research.

Enhancing Patient Understanding of Laboratory Test Results: Systematic Review of Presentation Formats and Their Impact on Perception, Decision, Action, and Memory.

BACKGROUND: Direct access of patients to their web-based patient portal, including laboratory test results, has become increasingly common. Numeric laboratory results can be challenging to interpret for patients, which may lead to anxiety, confusion, and unnecessary doctor consultations. Laboratory results can be presented in different formats, but there is limited evidence regarding how these presentation formats impact patients' processing of the information. OBJECTIVE: This study aims to synthesize the evidence on effective formats for presenting numeric laboratory test results with a focus on outcomes related to patients' information processing, including affective perception, perceived magnitude, cognitive perception, perception of communication, decision, action, and memory. METHODS: The search was conducted in 3 databases (PubMed, Web of Science, and Embase) from inception until May 31, 2023. We included quantitative, qualitative, and mixed methods articles describing or comparing formats for presenting diagnostic laboratory test results to patients. Two reviewers independently extracted and synthesized the characteristics of the articles and presentation formats used. The quality of the included articles was assessed by 2 independent reviewers using the Mixed Methods Appraisal Tool. RESULTS: A total of 18 studies were included, which were heterogeneous in terms of study design and primary outcomes used. The quality of the articles ranged from poor to excellent. Most studies (n=16, 89%) used mock test results. The most frequently used presentation formats were numerical values with reference ranges (n=12), horizontal line bars with colored blocks (n=12), or a combination of horizontal line bars with numerical values (n=8). All studies examined perception as an outcome, while action and memory were studied in 1 and 3 articles, respectively. In general, participants' satisfaction and usability were the highest when test results were presented using horizontal line bars with colored blocks. Adding reference ranges or personalized information (eg, goal ranges) further increased participants' perception. Additionally, horizontal line bars significantly decreased participants' tendency to search for information or to contact their physician, compared with numerical values with reference ranges. CONCLUSIONS: In this review, we synthesized available evidence on effective presentation formats for laboratory test results. The use of horizontal line bars with reference ranges or personalized goal ranges increased participants' cognitive perception and perception of communication while decreasing participants' tendency to contact their physicians. Action and memory were less frequently studied, so no conclusion could be drawn about a single preferred format regarding these outcomes. Therefore, the use of horizontal line bars with reference ranges or personalized goal ranges is recommended to enhance patients' information processing of laboratory test results. Further research should focus on real-life settings and diverse presentation formats in combination with outcomes related to patients' information processing.

Public and Patient Involvement in Migration Health Research: Eritrean and Syrian Refugees' and Asylum Seekers' Views in Switzerland.

Prior research has highlighted important healthcare access and utilization issues among new forced immigrants. We aimed to explore the role that public and patient involvement (PPI) might play in enhancing accessibility and specific contributions to migration health studies. We conducted open and in-depth interactive virtual discussions with asylum seekers and refugees from Eritrea and Syria in Switzerland. The PPI establishment consisted of three phases: inception, training and contribution. Prior to training, the concept of PPI was not straightforward to grasp, as it was a new approach-however, after training and consecutive discussions, participants were ardent to engage actively. We conclude that PPI holds promise in regard to raising awareness, improving healthcare system accessibilities and utilization, and enhancing and strengthening migration health research. Indeed, PPI volunteers were keen to raise their community's awareness through their networks and bridge an important gap between researchers and the public.