Understanding Canadian stakeholders' views on measuring and valuing health for children and adolescents: a qualitative study.

OBJECTIVE: Valuing child health is critical to assessing the value of healthcare interventions for children. However, there remain important methodological and normative issues. This qualitative study aimed to understand the views of Canadian stakeholders on these issues. METHODS: Stakeholders from health technology assessment (HTA) agencies, pharmaceutical industry representatives, healthcare providers, and academic researchers/scholars were invited to attend an online interview. Semi-structured interviews were designed to focus on: (1) comparing the 3-level and 5-level versions of the EQ-5D-Y; (2) source of preferences for valuation (adults vs. children); (3) perspective of valuation tasks; and (4) methods for valuation (discrete choice experiment [DCE] and its variants versus time trade-off [TTO]). Participants were probed to consider HTA guidelines, cognitive capacity, and potential ethical concerns. All interviews were recorded and transcribed verbatim. Framework analysis with the incidence density method was used to analyze the data. RESULTS: Fifteen interviews were conducted between May and September 2022. 66.7% (N = 10) of participants had experience with economic evaluations, and 86.7% (N = 13) were parents. Eleven participants preferred the EQ-5D-Y-5L. 12 participants suggested that adolescents should be directly involved in child health valuation from their own perspective. The participants were split on the ethical concerns. Eight participants did not think that there was ethical concern. 11 participants preferred DCE to TTO. Among the DCE variants, 6 participants preferred the DCE with duration to the DCE with death. CONCLUSIONS: Most Canadian stakeholders supported eliciting the preferences of adolescents directly from their own perspective for child health valuation. DCE was preferred if adolescents are directly involved.

Fogging to combat dengue: factors influencing stakeholders' attitudes in Malaysia.

BACKGROUND: Fogging is a conventional technique used to combat Aedes mosquitoes and prevent dengue disease. It is often implemented in outbreak areas or areas harbouring a high density of Aedes mosquitoes. Currently, studies on stakeholders' attitudes towards fogging are still limited in number. Therefore, this study aims to assess Malaysian attitudes, and identify the predicting factors influencing such attitudes. METHODS: A validated instrument was used to interview 399 randomly selected respondents from the public (n = 202, 50.6%) and scientists (n = 197, 49.4%) in the Klang Valley region of Malaysia. The data were analysed using PLS-SEM involving Smart-PLS software. RESULTS: The results confirmed that stakeholder attitudes toward fogging should be viewed in terms of a multi-dimensional association. The stakeholders surveyed were highly positive with regard to the application of fogging to control dengue but professed moderate concerns as to associated risks. The PLS-SEM analyses demonstrated that the perceived benefit was the most important factor influencing attitudes, followed by trust in key players. CONCLUSIONS: This result provides a good insight from the perspective of education and unravels the underlying fundamentals of stakeholders' attitudes toward the fogging technique. The findings also provide a positive indicator to the responsible parties involved to continue the usage of this technique in conjunction with improvements with regard to its safety aspects, and possibly in combination with other environmental-friendly alternatives in order to achieve a healthy environment without dengue in Malaysia.

Getting our hopes up: How actors perceive network effectiveness and why it matters.

Health care's grand challenges, such as continuously increasing costs, challenge the sustainability of health systems. Purpose-oriented networks are considered a favorable mode of organization to address these grand challenges. Therefore, it is crucial that they are effective. While network effectiveness is a heavily theorized, multi-dimensional concept that is often measured as a perception of actors, little is known about how network actors perceive effectiveness in practice and how this influences their behavior. In this study, we explored how network actors perceive network effectiveness using 32 interviews with representatives from network member organizations and regulatory agencies actor, 28 h of network meeting observations, and 1.272 pages of documents such as meeting minutes and media outlets. Our results show that actors primarily see hard outcomes (e.g. changes in cost or quality of care) as effectiveness but given the temporal nature of these goals and difficulties quantifying them, they resort to the collaborative process as a proxy to assess effectiveness. Actors engage in networks to solve grand challenges. However, conforming to expectations and environmental pressures also play a substantial role for actors to (continue to) participate in networks. In the absence of hard outcomes, actors legitimize their continued participation in networks using the collaborative process of networks. Actors therefore take purpose-oriented networks for granted as a legitimate way of organizing. Besides attempting to solve grand challenges, networks thus also seem to be adopted because of powerful institutional rules that function as rationalized myths, to gain legitimacy. Future research should be aware of and further unravel the institutional pressures in networks.

Multiple stakeholders' perspectives on patient and public involvement in community mental health services research: A qualitative analysis.

BACKGROUND: Patient and public involvement (PPI) has become essential in health research. However, little is known about multiple stakeholders' perspectives on the implementation of PPI in community mental health research settings. The present study aimed to qualitatively analyse multiple stakeholders' views on PPI, including potential concerns, barriers and approaches. METHODS: This study involved conducting focus group interviews and collecting qualitative data from 37 participants in multiple stakeholder groups (patients = 6, caregivers = 5, service providers = 7, government staff = 5 and researchers = 14) in the community mental health field. The data were qualitatively analysed using a data-driven approach that derived domains, themes and subthemes related to perspectives on PPI and to specific challenges and approaches for implementing PPI. RESULTS: The qualitative analysis identified four domains. The 'Positive views and expectations regarding PPI' domain consisted of themes related to supportive views of PPI in a mental health service research setting and improvements in the quality of research and service. The 'General concerns about PPI' domain included themes concerning the need for non-PPI research and tokenism, excessive expectations concerning social changes and use of evidence from PPI research, and heavy burdens resulting from PPI. The 'Specific issues regarding the implementation of PPI' domain consisted of four themes, including academic systems, selection methods (e.g., representativeness and conflict of interest issues), relationship building, and ambiguous PPI criteria. In particular, all stakeholder groups expressed concerns about relational equality during PPI implementation in Japan. The 'Approaches to PPI implementation' domain included themes such as facilitating mutual understanding, creating a tolerant atmosphere, establishing PPI support systems (e.g., training, ethics and human resource matching) and empowering patient organizations. CONCLUSION: The study replicated most of the barriers and approaches to PPI reported by qualitative research in Western counties. However, utilization of evidence produced by PPI research and partnership in the PPI process may be particularly serious issues in Japan. Future PPI studies should carefully address solutions that fit each culture. PATIENT OR PUBLIC CONTRIBUTION: A patient-researcher was involved in all stages of this project, from development of the research topic and the protocol to manuscript preparation.

Implementing and optimizing a communication curriculum in medical teaching: Stakeholders' perspectives.

OBJECTIVE: The relevance of communication in medical education is continuously increasing. At the Medical Faculty of Hamburg, the communication curriculum was further developed and optimized during this project. This article aims to describe the stakeholders' perceived challenges and supporting factors in the implementation and optimization processes. METHODS: The initial communication curriculum and its development after a one-year optimization process were assessed with a curricular mapping. A SWOT analysis and group discussions were carried out to provide information on the need for optimization and on challenges the different stakeholders faced. RESULTS: The curricular mapping showed that the communication curriculum is comprehensive, coherent, integrated and longitudinal. In both the implementation and the project-related optimization processes, support from the dean, cooperation among all stakeholders and structural prerequisites were deemed the most critical factors for successfully integrating communication content into the curriculum. CONCLUSION: The initiative and support of all stakeholders, including the dean, teachers and students, were crucial for the project's success. PRACTICE IMPLICATIONS: Although the implementation of a communication curriculum is recommended for all medical faculties, their actual implementation processes may differ. In a "top-down" and "bottom-up" approach, all stakeholders should be continuously involved in the process to ensure successful integration.

Critical factors that affect the functioning of a research and evaluation capacity building partnership: A causal loop diagram.

INTRODUCTION: Public health policy and practice is strengthened by the application of quality evidence to decision making. However, there is limited understanding of how initiatives that support the generation and use of evidence in public health are operationalised. This study examines factors that support the internal functioning of a partnership, the Western Australian Sexual Health and Blood-borne Virus Applied Research and Evaluation Network (SiREN). SiREN aims to build research and evaluation capacity and increase evidence-informed decision making in a public health context. METHODS: This study was informed by systems concepts. It developed a causal loop diagram, a type of qualitative system model that illustrated the factors that influence the internal operation of SiREN. The causal loop diagram was developed through an iterative and participatory process with SiREN staff and management (n = 9) via in-depth semi-structured interviews (n = 4), workshops (n = 2), and meetings (n = 6). RESULTS: Findings identified critical factors that affected the functioning of SiREN. Central to SiREN's ability to meet its aims was its capacity to adapt within a dynamic system. Adaptation was facilitated by the flow of knowledge between SiREN and system stakeholders and the expertise of the team. SiREN demonstrated credibility and capability, supporting development of new, and strengthening existing, partnerships. This improved SiREN's ability to be awarded new funding and enhanced its sustainability and growth. SiREN actively balanced divergent stakeholder interests to increase sustainability. CONCLUSION: The collaborative development of the diagram facilitated a shared understanding of SiREN. Adaptability was central to SiREN achieving its aims. Monitoring the ability of public health programs to adapt to the needs of the systems in which they work is important to evaluate effectiveness. The detailed analysis of the structure of SiREN and how this affects its operation provide practical insights for those interested in establishing a similar project.

Stakeholders' Perspectives on the Current Status of Partnerships between the Food Banking and Healthcare Systems to Address Food Insecurity in the U.S.

One in eight people in the U.S. experience food insecurity (FI). To date, the food banking sector has been at the forefront of efforts to address FI, but the healthcare sector is becoming increasingly involved in such efforts. The extent of collaboration between the two sectors remains unclear. We explored food banking stakeholders' views on the current state of partnerships between the two sectors. We used purposive sampling to recruit ten key informants for semi-structured interviews. We also conducted a national online survey to gather data from food bank directors (n = 137). Thematic analysis generated two major themes: (1) Healthcare and food banking stakeholders are coordinating to achieve collective impact, and (2) Food banking-healthcare partnerships are leveraging various resources and vested interests within the medical community. We found evidence of ongoing partnerships between the two sectors and opportunities to strengthen these partnerships through the support of backbone organizations.

Measuring citizens' engagement during emergencies: Psychometric validation of the Public Health Engagement Scale for Emergency Settings (PHEs-E).

The Covid-19 pandemic has highlighted the importance of citizens' behaviors in the containment of the virus. Individuals might change their intention to adhere to public health prescriptions depending on various personal characteristics, including their own emotional status, which has been recognized to be a crucial psychological factor in orienting people's adherence to public health recommendation during emergency settings. In particular, it is crucial to support citizens' alliance with authorities and feeling of trust: public engagement is a concept that refers to the general involvement of citizens into public affairs which is generally considered an effective approach to enhance citizens' understanding of their crucial role in public affairs. However, so far there is no agreement on the metrics and indexes that should be used to measures public engagement during a health crisis. The aim of this paper is to validate a psychometric scale (PHEs-E), which intends to measure the readiness of individuals to adhere to the prescribed behavioral change to contain the emergency. Data were collected throughout the pandemic in Italy: in particular, five independent samples were recruited starting from March 2020 to March 2021. Results showed that the proposed measure has good psychometric characteristics. A general linear model was computed to assess the differences of public engagement across the different data points and among citizens with different sociodemographic characteristics. Correlations with other psychological constructs (i.e. Anxiety, Depression and Self-Efficacy) were also tested, showing that more engaged citizens have a lower level of anxiety and depression, and a higher self-efficacy. This study's findings indicate that individuals' characteristics may differentiate citizens' motivation to engage in public health behavioral recommendation to prevent the COVID-19 contagion. However the scale could be useful to perform a psychological monitoring of psychological readiness to engage in public health strategies to face critical events and settings.

Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders' perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.

Using self-determination theory to understand and improve recruitment for the Coaching for Healthy Ageing (CHAnGE) trial.

BACKGROUND: Intervention trials promoting physical activity among older people frequently report low and unrepresentative recruitment. Better understanding of reasons for participation can help improve recruitment. This study explored why participants enrolled in the Coaching for Healthy Ageing (CHAnGE) trial, including how their decision was influenced by recruitment strategies. CHAnGE was a cluster randomised controlled trial testing the effectiveness of a healthy ageing program targeting inactivity and falls. Seventy-two groups of people aged 60+ were recruited from community organisations via informal presentations by the health coaches. METHODS: We conducted a secondary thematic analysis of interview data from our wider qualitative evaluation in which 32 purposively sampled trial participants took part in semi-structured interviews about their experiences of CHAnGE. Data relating to recruitment and participation were analysed inductively to identify themes, then a coding framework comprising the core constructs from self-determination theory-autonomy, competence and relatedness-was used to explore if and how this theory fit with and helped to explain our data. RESULTS: Recruitment presentations promoted the CHAnGE intervention well in terms of addressing value expectations of structured support, different forms of accountability, credibility, achievability and, for some, a potential to enhance social relationships. Participation was motivated by the desire for improved health and decelerated ageing, altruism and curiosity. These factors related strongly to self-determination concepts of autonomy, competence and relatedness, but the intervention's demonstrated potential to support self-determination needs could be conveyed more effectively. CONCLUSIONS: Findings suggest that recruitment could have greater reach using: 1. Strengths-based messaging focusing on holistic gains, 2. Participant stories that highlight positive experiences, and 3. Peer support and information sharing to leverage altruism and curiosity. These theory-informed improvements will be used to increase participation in future trials, including people in hard-to-recruit groups. They may also inform other physical activity trials and community programs.

Exploring the provision and motives behind the adoption of health-promotion programmes in professional football clubs across four European countries.

This study mapped existing health-promotion provisions targeting adults in professional football clubs across England, the Netherlands, Norway, and Portugal, and explored motives behind the clubs' adoption of the European Fans in Training (EuroFIT) programme. We surveyed top-tier football clubs in the four countries and interviewed representatives from football clubs and the clubs' charitable foundation who delivered EuroFIT. The findings showed large between-country differences, with football clubs in England reporting far greater healthy lifestyle provision than other countries. Relatively few health-promotion programmes targeted adults, particularly in the Netherlands, Portugal, and Norway. Club representatives reported that the motives for adopting the EuroFIT programme often involved adhering to both the social objectives of the football club or club's foundation and business-related objectives. They viewed the scientific evidence and evaluation underpinning EuroFIT as helpful in demonstrating the value and potential future impact of both the programme and the clubs' wider corporate social responsibility provision.

Using Theory of Change to inform the design of the HIV+D intervention for integrating the management of depression in routine HIV care in Uganda.

There is growing recognition of the burden of depression in people living with HIV/AIDS (PLWHA), associated with negative behavioural and clinical outcomes. Unfortunately, most HIV care providers in sub-Saharan Africa do not routinely provide mental health services to address this problem. This article describes the process of developing a model for integrating the management of depression in HIV care in Uganda. Theory of Change (ToC) methodology was used to guide the process of developing the model. Three successive ToC workshops were held with a multi-disciplinary group of 38 stakeholders within Wakiso district, in the Central region of Uganda. The first 2 workshops were for generating practical ideas for a feasible and acceptable model of integrating the management of depression in HIV care at all levels of care within the district healthcare system; while the third and final workshop was for consensus building. Following meaningful brainstorming and discussions, the stakeholders suggested improved mental wellbeing among PLWHA as the ultimate outcome of the program. This would be preceded by short-term and intermediate outcomes including reduced morbidity among persons with HIV attributable to depression, allocation of more resources towards management of depression, increased help-seeking among depressed PLWHA and more health workers detecting and managing depression. These would be achieved following several interventions undertaken at all levels of care. The participants further identified some indicators of successful implementation such as emphasis of depression management in the district healthcare plans, increased demand for anti-depressants etc; as well as various assumptions underlying the intervention. All these were graphically aligned in a causal pathway, leading to a ToC map, contextualizing and summarizing the intervention model. The ToC was a valuable methodology that brought together stakeholders to identify key strategies for development of a comprehensible contextualized intervention model for managing depression within HIV care in Uganda; allowing greater stakeholder engagement and buy-in.

Perspectives of Stakeholders About an Early Result Acceptance Program to Complement the Residency Match in Obstetrics and Gynecology.

Importance: The residency application process is flawed, costly, and distracts from the preparation for residency. Disruptive change is needed to improve the inefficiencies in current selection processes. Objective: To determine interest in an early result acceptance program (ERAP) among stakeholders in obstetrics and gynecology (OBGYN), and to estimate its outcome in future application cycles. Design, Setting, and Participants: Surveys of stakeholders in March 2021 queried interest in ERAP across the US. Respondents included OBGYN residency applicants, members of the Association of American Medical Colleges Group on Student Affairs, OBGYN clerkship directors, and residency program directors. Statistical analysis was performed from March to April 2021. Exposures: Respondents completed surveys sent by email from the Association of American Medical Colleges (to OBGYN applicants and members of the Group on Student Affairs), the Association of Professors of Gynecology and Obstetrics (to clerkship directors), and the Council on Resident Education in Obstetrics and Gynecology (to program directors). Main Outcomes and Measures: Applicants and program directors indicated their interest in participating in ERAP, and clerkship directors and members of the Group on Student Affairs indicated their likelihood of recommending ERAP using a 5-point Likert scale. Results: Respondents included 879 (34.0%) of 2579 applicants to OBGYN, 143 (50.3%) of 284 residency program directors, 94 (41.8%) of 225 clerkship directors, and 51 (32.9%) of 155 student affairs deans. The majority of respondents reported being either somewhat or extremely likely to participate in ERAP, including 622 applicants (70.7%) and 87 program directors (60.8%). Interest in ERAP was independent of an applicant's reported board scores, medical school type, race, number of applications submitted, or number of interviews completed. Among program directors, those at university programs were more likely to participate. Stakeholders supported a limit of 3 applications for ERAP, to fill 25% to 50% of residency positions. Estimating the outcome of ERAP using these data suggests 26 280 to 52 560 fewer applications could be submitted in the regular match cycle. Conclusions and Relevance: Stakeholders in the OBGYN application process expressed broad support for the concept of ERAP. The majority of applicants and programs indicated that they would participate, with potentially substantial positive impact on the application process. Careful pilot testing and research regarding implementation are essential to avoid worsening an already dysfunctional application process.

Dental Therapists in the United States: Health Equity, Advancing.

BACKGROUND: Dental therapists (DTs) are primary care dental providers, used globally, and were introduced in the United States (US) in 2005. DTs have now been adopted in 13 states and several Tribal nations. OBJECTIVES: The objective of this study is to qualitatively examine the drivers and outcomes of the US dental therapy movement through a health equity lens, including community engagement, implementation and dissemination, and access to oral health care. METHODS: The study compiled a comprehensive document library on the dental therapy movement including literature, grant documents, media and press, and gray literature. Key stakeholder interviews were conducted across the spectrum of engagement in the movement. Dedoose software was used for qualitative coding. Themes were assessed within a holistic model of oral health equity. FINDINGS: Health equity is a driving force for dental therapy adoption. Community engagement has been evident in diverse statewide coalitions. National accreditation standards for education programs that can be deployed in 3 years without an advanced degree reduces educational barriers for improving workforce diversity. Safe, high-quality care, improvements in access, and patient acceptability have been well documented for DTs in practice. CONCLUSION: Having firmly taken root politically, the impact of the dental therapy movement in the US, and the long-term health impacts, will depend on the path of implementation and a sustained commitment to the health equity principle.

Understanding Stakeholder Preference for Contralateral Prophylactic Mastectomy: A Conjoint Analysis.

BACKGROUND: Despite increasing numbers of women with unilateral breast cancer undergoing CPM, quantitative evidence of all stakeholder preferences regarding CPM is lacking, particularly for healthy volunteers. Conjoint analysis, a marketing tool, can be used to quantify tradeoffs surrounding CPM. STUDY DESIGN: The objective of this study was to quantify preferences for aspects of contralateral prophylactic mastectomy (CPM) decision-making process among key stakeholders. Healthy volunteers, women with cancer (WwCa), surgical oncologists, and plastic surgeons were surveyed with the same conjoint simulation exercise. Respondents chose between either single (SM) or double (DM) mastectomy under varying recurrence and complication rates, surveillance, and symmetry conditions. Hierarchical Bayesian models calculated partworth utilities and importance scores. RESULTS: Overall, 1,244 respondents participated. The top 3 important factors for all stakeholders were surgical complication rates after DM, type of surgery (SM vs DM) independent of other variables, and 10-year future contralateral cancer risk after SM. HV and surgeons placed greatest importance on high rates of surgical complications after DM. WwCa preferred DM, regardless of complication risk or low rates of a 10-year future cancer episode after SM. Surgical oncologists strongly preferred SM and were more accepting of future cancer risk of 3% or 10% than other stakeholders. Symmetry and need for surveillance were least important factors for all stakeholders. CONCLUSIONS: The threshold of acceptability for future cancer episodes and risk tolerance for complications varies by stakeholder, with a profound influence upon WwCA. Current findings suggest room for improved provider and patient alignment through behavioral techniques, such as framing, meanwhile highlighting changes in risk perception after a breast cancer diagnosis.

Perspectives of four stakeholder groups about the participation of female forest landowners in forest management in Georgia, United States.

As the number of female forest landowners (FFLs) in the United States continues to rise, there is an increasing need to understand the perceptions of stakeholder groups about opportunities and challenges faced by FFLs in the context of sustainable forestland management. This study utilizes the technique of SWOT-AHP (Strengths, Weaknesses, Opportunities, and Treats-Analytical Hierarchy Process) to understand the perceptions of four stakeholder groups (FFLs, private foresters, government representatives, and non-profits) in Georgia-a significant forestry state located in the Southern United States. Sixteen factors (four under each SWOT category) were selected through a comprehensive literature review and detailed interviews with individuals from the identified stakeholder groups. A survey was created using these factors that asked stakeholders to compare them in their respective SWOT categories. An additional survey was created for each stakeholder group where survey participants compared the highest-ranking factors in each SWOT category. We found that all stakeholder groups prioritized weaknesses over the other SWOT categories. Results showed a significant need for relevant educational outreach programs that cater specifically to FFLs. Additionally, researchers found a need to promote the interest of future generations in forestland management as all stakeholder groups felt that limited interest from future generations was the most important threat. This study will directly feed into regional, national, and international attempts to increase the participation of minority family forest landowners in sustainable forest management through integrated forest policy development.

Identifying critical features of type two diabetes prevention interventions: A Delphi study with key stakeholders.

AIMS: This study aims to identify critically important features of digital type two diabetes mellitus (T2DM) prevention interventions. METHODS: A stakeholder mapping exercise was undertaken to identify key end-user and professional stakeholders, followed by a three-round Delphi procedure to generate and evaluate evidence statements related to the critical elements of digital T2DM prevention interventions in terms of product (intervention), price (funding models/financial cost), place (distribution/delivery channels), and promotion (target audiences). RESULTS: End-user (n = 38) and professional (n = 38) stakeholders including patients, dietitians, credentialed diabetes educators, nurses, medical doctors, research scientists, and exercise physiologists participated in the Delphi study. Fifty-two critical intervention characteristics were identified. Future interventions should address diet, physical activity, mental health (e.g. stress, diabetes-related distress), and functional health literacy, while advancing behaviour change support. Programs should be delivered digitally or used multiple delivery modes, target a range of population subgroups including children, and be based on collaborative efforts between national and local and government and non-government funded organisations. CONCLUSIONS: Our findings highlight strong support for digital health to address T2DM in Australia and identify future directions for T2DM prevention interventions. The study also demonstrates the feasibility and value of stakeholder-led intervention development processes.

Communicating to Engage: An Improvisational Theater-Based Communication Training Designed to Support Community-Academic Partnership Development.

PROBLEM: The potential for community-engaged research to address health inequity requires deliberate effort to create trusting and equitable community-academic partnerships. A lack of evidence-based opportunities for cultivating such partnerships remains a barrier. APPROACH: In 2017 and 2018, the authors designed, facilitated, and evaluated a mixed stakeholder training, Communicating to Engage, at 2 urban academic medical centers involved in the All of Us research program, Boston Medical Center and Mass General Brigham. The goal was to bring together researchers and community members to develop communication skills through improvisational theater-based co-learning. The curriculum was inspired by several evidence-based learning frameworks including community-based participatory research principles and improvisational theater techniques. A self-administered survey completed before and after the training session measured participants' communication skills using the Self-Perceived Communication Competence Scale (SPCCS) and comfort with specific communication styles as outlined in the program's training objectives. Paired t tests were used to measure changes in scaled responses among combined participants and separately among self-identified community members and researchers. OUTCOMES: Sixty-nine total participants across 6 workshops completed training evaluations. Overall, pre-post survey analysis demonstrated significant mean score improvement for both the SPCCS and comfort with specific communication styles. In stratified analysis, both community members (n = 26) and researchers (n = 38) reported significant improvement in scores related to comfort with specific communication styles. Only researchers, but not community members, had significant improvement in SPCCS scores. NEXT STEPS: The Communicating to Engage program brought community and researcher stakeholders together and demonstrated improvement in self-perceived communication styles, yet researcher participants benefited more than community participants. Future innovation is necessary to further target community stakeholder communication training needs. Mixed stakeholder improvisational theater-based learning provides deliberate opportunities to build new community-academic partnerships that may enhance health equity initiatives.

A virtual deliberative public engagement study on heritable genome editing among South Africans: Study protocol.

This article outlines the protocol for a prospective study for virtual deliberative public engagement on heritable genome editing in humans. The study intends to create a platform for a diverse group of 25-30 South Africans to engage with a facilitator and each other on 15 policy questions regarding heritable genome editing, with a focus on: a) the prevention of heritable genetic conditions; b) editing for immunity; and c) editing for enhancement. The aim is to understand the views on these issues so as to inform further research and policy, and to analyse the process and effect of deliberation on opinion. Participants will be expected to study the provided resource materials and pass the entrance exam-aligning with the protocols of the Harvard Personal Genome Project. In this way, the commitment, openness and basic knowledge of the candidates will be tested to ascertain whether they are suitable participants for the deliberative engagement.