Primus Inter PARES: First among equals-practical strategies for young adult PAtient RESearch partners (PARES) by young adult PARES.

BACKGROUND: This manuscript is coauthored by 15 young adult Patient RESearch partners (PARES) with lived and living mental health experiences and three institutional researchers across Canada involved in a patient-oriented research (POR) study called the HEARTS Study: Helping Enable Access and Remove Barriers To Support for Young Adults with Mental Health-Related Disabilities. We share our reflections, experiences and lessons learned as we grapple with the field of POR for its lack of clarity, hierarchical structures, internalized ableism, and accessibility challenges, among others. To mitigate the difficulties of POR, we started by laying the groundwork for equality by embracing the principle of Primus Inter Pares: First Among Equals as the foundation of our approach. In this way, we began with what we know for certain: the inherent worth and dignity of young adults as equal partners, recognizing their expertise, worldviews, creativity, and capacity to contribute meaningfully and intentionally to the research that affects their lives and futures. MAIN BODY: The manuscript underscores the need to reconceptualize meaningful engagement in POR, advocating a shift from traditional, biased paradigms that fail to address the complexities faced by young adults with mental illness. It introduces what we have termed Adaptive and Differential Engagement, underscoring the necessity of tailoring participation to individual preferences and circumstances alongside a Tripartite Compensation model that promotes fair and holistic remuneration in research collaborations. Then we discuss the approaches we have conceptualized, such as Equitable Dialogue, Trust Architecture, Community Continuum, Unity in Diversity, Shared Stewardship, and Agile Frameworks that collectively aim to overcome barriers like language intimidation, power imbalances, framework fatigue, consultation burnout, trust deficits, and systemic discrimination and exclusion. The manuscript does not seek to prescribe any universal or standardized solutions; in fact, it seeks the opposite. Instead, it offers a thoughtful and transparent contribution to the POR canon, providing resources for young adults eager to engage in research and institutional researchers aspiring to collaborate with them. CONCLUSION: This manuscript is a product of our collective learning and critical self-evaluation. By integrating theoretical insights with practical strategies, we present a justice-oriented blueprint for an inclusive and egalitarian approach to POR. We advocate for applications of POR that are responsive to the individualized contexts of young adult PARES, ensuring their perspectives are central to the research with the resources to take the lead should they choose.

Together with a graduate student, co-supervisors, and 15 young people from across Canada who have experience with mental health challenges, this paper looks at how research involving young adults as patient research partners can be better. We feel that the types of research that are supposed to include us are often not clear enough and make it hard to join, especially those with unique life situations and health issues. So, in this paper, we suggest a few new ways of doing things where everyone is treated equally. We call it Primus Inter PARES: First Among Equals. This means young people are just as important as anyone else in research.We want to change the old ways that do not consider our unique experiences as young people with mental health issues. We came up with new ideas like 'Equitable Dialogue' and 'Trust Architecture' to ensure everyone understands the research and feels that they can trust the process. We also suggest ways to make sure different voices are heard and that everyone has a fair chance to contribute.We do not just offer a one-size-fits-all solution; instead, we share many ways to improve research to help young adults who want to be part of research and for the researchers who want to work with us. Our paper is about making research fair and including everyone's point of view. We hope this will make the research better for everyone, especially for young adults.

Social factors associated with self-reported changes in mental health symptoms among youth in the COVID-19 pandemic: a cross-sectional survey.

BACKGROUND: Children and youth experienced marked impacts on day-to-day life in the COVID-19 pandemic that were associated with poorer familial and friend relationships, and greater mental health challenges. Few studies provide self-report data on mental health symptoms from children and youth themselves. We sought to examine the associations between social factors and child and youth self-reported symptoms of worsened mood, anxiety, and irritability during the COVID-19 pandemic. METHODS: A nationally representative cross-sectional survey was administered online to collect self-report data across 10 Canadian provinces among children (11-14 years) and youth (15-18 years), April-May 2022. Age-appropriate questions were based on The Partnership for Maternal, Newborn & Child Health and the World Health Organization of the United Nations H6 + Technical Working Group on Adolescent Health and Well-Being consensus framework and the Coronavirus Health and Impact Survey. Associations between a priori defined social factors (e.g., relationship quality) and respondent self-reported mental health were evaluated using ordinal logistic regression models adjusted for age, sex, and geographic location. RESULTS: We analyzed data from 483 (51.7%) children (11-14 years; 227, 47.0% girls) and 450 (48.3%) youth (15-18 years; 204, 45.3% girls). The parents of most children and youth had resided in Canada for over 20 years (678, 72.7%). Over one-quarter of children and youth self-identified as Black, Indigenous, or a Person of Color (134, 27.7%; 134, 29.8%, respectively). Over one-third of children and youth self-reported symptoms of worsened mood (149, 30.9%; 125, 27.8%, respectively), anxiety (181, 37.5%; 167, 37.1%, respectively), or irritability (160, 33.1%; 160, 35.6%, respectively) during, compared to pre-pandemic. In descending order of odds ratios (OR), for children and youth, worsened familial relationships (during compared to pre-pandemic) was associated with the self-reported symptoms of worsened mood (child: OR 4.22, 95%CI 2.51-6.88; youth: OR 6.65 95%CI 3.98-11.23), anxiety (child: OR 4.24, 95%CI2.69-6.75; youth: OR 5.28, 95%CI 3.17-8.86), and irritability (child: OR 2.83, 95%CI 1.76-4.56; youth: OR 6.46, 95%CI 3.88-10.90). CONCLUSIONS: Self-reported data from a nationally representative sample of children and youth suggest strong associations between social factors and mental health during the COVID-19 pandemic. Interventions targeting child and youth familial relationships may positively impact child and youth mental health.

Codesigning a user-centred digital psychoeducational tool for youth mental well-being with families in Canada: study protocol for a sequential exploratory mixed methods study.

INTRODUCTION: On 11 March 2020, WHO declared the novel coronavirus (COVID-19) disease a global pandemic. Governments globally implemented physical distancing measures and closure of public institutions that resulted in varying implications to youth mental well-being (eg, social isolation, reduced extracurricular activities). These impacts may have detrimental short-term and long-term effects on youth mental well-being; care for youth with mental health disorders was already overstretched, underfunded and fragmented before the pandemic and youth are not often considered in mental health initiatives. There is a pressing need to partner with youth and families to target and improve youth mental well-being prior to the onset of a mental health disorder, as well as to conduct research on youth mental well-being needs related to pandemic recovery. Here we present a protocol for partnering with youth and families to codesign a user-centred digital tool for youth mental well-being. METHODS AND ANALYSIS: We will conduct a national research study to develop a catalogue of recommendations specific to supporting youth mental well-being, and a digital tool to support youth mental well-being through three phases of work: (1) expert consultation on data related to supporting youth mental well-being existing within our Pandemic Preparedness Research Program; (2) codesign of an innovative digital tool for youth mental well-being; and (3) assessment of the tool's usability and acceptability. ETHICS AND DISSEMINATION: This study has been approved by the Dalhousie Research Ethics Board (2023-6538) and the Conjoint Health Research Ethics Board (23-0039). This study will complement ongoing foundational research in youth conducted by our team that involves partnering with youth and families to understand the unique implications of the pandemic on this population.

A muti-informant national survey on the impact of COVID-19 on mental health symptoms of parent-child dyads in Canada.

The COVID-19 pandemic negatively impacted the mental health of children, youth, and their families which must be addressed and prevented in future public health crises. Our objective was to measure how self-reported mental health symptoms of children/youth and their parents evolved during COVID-19 and to identify associated factors for children/youth and their parents including sources accessed for information on mental health. We conducted a nationally representative, multi-informant cross-sectional survey administered online to collect data from April to May 2022 across 10 Canadian provinces among dyads of children (11-14 years) or youth (15-18 years) and a parent (> 18 years). Self-report questions on mental health were based on The Partnership for Maternal, Newborn & Child Health and the World Health Organization of the United Nations H6+ Technical Working Group on Adolescent Health and Well-Being consensus framework and the Coronavirus Health and Impact Survey. McNemar's test and the test of homogeneity of stratum effects were used to assess differences between children-parent and youth-parent dyads, and interaction by stratification factors, respectively. Among 933 dyads (N = 1866), 349 (37.4%) parents were aged 35-44 years and 485 (52.0%) parents were women; 227 (47.0%) children and 204 (45.3%) youth were girls; 174 (18.6%) dyads had resided in Canada < 10 years. Anxiety and irritability were reported most frequently among child (44, 9.1%; 37, 7.7%) and parent (82, 17.0%; 67, 13.9%) dyads, as well as among youth (44, 9.8%; 35, 7.8%) and parent (68, 15.1%; 49, 10.9%) dyads; children and youth were significantly less likely to report worsened anxiety (p < 0.001, p = 0.006, respectively) or inattention (p < 0.001, p = 0.028, respectively) compared to parents. Dyads who reported financial or housing instability or identified as living with a disability more frequently reported worsened mental health. Children (96, 57.1%), youth (113, 62.5%), and their parents (253, 62.5%; 239, 62.6%, respectively) most frequently accessed the internet for mental health information. This cross-national survey contextualizes pandemic-related changes to self-reported mental health symptoms of children, youth, and families.

Strategies to mitigate the impact of the COVID-19 pandemic on child and youth well-being: a scoping review protocol.

INTRODUCTION: Children and youth are often more vulnerable than adults to emotional impacts of trauma. Wide-ranging negative effects (eg, social isolation, lack of physical activity) of the COVID-19 pandemic on children and youth are well established. This scoping review will identify, describe and categorise strategies taken to mitigate potentially deleterious impacts of the COVID-19 pandemic on children, youth and their families. METHODS AND ANALYSIS: We will conduct a scoping review following the Arksey-O'Malley five-stage scoping review method and the Scoping Review Methods Manual by the Joanna Briggs Institute. Well-being will be operationalised according to pre-established domains (health and nutrition, connectedness, safety and support, learning and competence, and agency and resilience). Articles in all languages for this review will be identified in CINAHL, Cochrane CENTRAL Register of Controlled Trials, EMBASE, ERIC, Education Research Complete, MEDLINE and APA PsycINFO. The search strategy will be restricted to articles published on or after 1 December 2019. We will include primary empirical and non-empirical methodologies, excluding protocols, reports, opinions and editorials, to identify new data for a broad range of strategies to mitigate potentially deleterious impacts of the COVID-19 pandemic on child and youth well-being. Two reviewers will calibrate screening criteria and the data abstraction form and will independently screen records and abstract data. Data synthesis will be performed according to the convergent integrated approach described by the Joanna Briggs Institute. ETHICS AND DISSEMINATION: Ethical approval is not applicable as this review will be conducted on published data. Findings of this study will be disseminated at national and international conferences and will inform our pan-Canadian multidisciplinary team of researchers, public, health professionals and knowledge users to codesign and pilot test a digital psychoeducational health tool-an interactive, web-based tool to help Canadian youth and their families address poor mental well-being resulting from and persisting beyond the COVID-19 pandemic.

Designing Solutions for Clean Water on Cape Cod: Engaging Communities to Improve Decision Making.

Many of the remaining mechanisms for reducing land-based nitrogen release in coastal communities depend on behavior change, social acceptance, and public support of localized mitigation programs. These needs necessitate appropriate and effective stakeholder engagement. Cape Cod, Massachusetts, USA, is one example of an area undergoing significant local, regional, state and federal decision-making processes to address nitrogen impacts on coastal waterbodies through an update to its Area Wide Water Quality Management Plan (208 Plan). The 208 Plan Update seeks to support mitigation of nitrogen pollution and restore estuarine health through active community engagement with elected officials, town staff, citizens, and other stakeholders across its 53 embayment watersheds, 35 of which are deemed impaired. With an economy deeply tied to the environment, the region is in the difficult position of needing to make significant infrastructure investments to maintain its reputation for high quality coastal waters. It is the first region in the United States to undergo an extensive revisit of its Area Wide Water Quality Management Plan developed pursuant to Section 208of the federal Clean Water Act for the purpose of addressing nitrogen. The community engagement process for the 208 Plan Update set forth to 1) understand the range of perspectives regarding the extent of the nitrogen impacts as well as the possible solutions, 2) ensure two-way communication of available information, and 3) build trust through a transparent process. The process specifically applied a number of different mechanisms for community engagement which enabled progress in addressing nitrogen management needs. The process helped to determine and address barriers to successful implementation of nitrogen mitigation plans and resulted in a framework for watershed-based planning that relies on regional coordination and supports local selection of mitigation strategies. As a result, communities in the region are developing innovative cross-municipal partnerships and committing to fund infrastructure necessary to decrease nitrogen loading to coastal embayments.

The Current Status of Outcomes-Based Contracting for Manufacturers and Payers: An AMCP Membership Survey.

BACKGROUND: As the United States health care system shifts from traditional volume-based payments to value-based payments, outcomes-based contracts (OBCs) are gaining popularity among payers and manufacturers as a mechanism for the shift toward value. Under this model, stakeholders hope to align drug payment and value to real-world performance metrics (e.g., biomarkers and health care resource utilization). OBJECTIVE: To understand the experiences, perceptions, and needs of payers and manufacturers related to OBCs. METHODS: The Academy of Managed Care Pharmacy (AMCP) and Xcenda conducted an online survey with AMCP payer and manufacturer members. Participants were asked a series of questions regarding their use of OBCs, barriers to implementation, and elements required in establishing successful OBCs. The importance and urgency of specific impediments to successful OBC implementation were also assessed. RESULTS: The survey was fielded May 12, 2017, to June 7, 2017, yielding 65 responses (35 payers/30 manufacturers). While a minority of payers/manufacturers had at least 1 OBC in place (20%/33%), a majority had interest in future OBC use (71%/63%). Among those with at least 1 OBC in place, 86%/80% of payers/manufacturers had renewed at least 1 OBC in the past 5 years. All payers and 60% of manufacturers with OBCs included compliance measures. Improvement in clinical outcomes was also common (71%/70%) (e.g., reaching set laboratory values goals), and 71%/60% included avoidance of unnecessary medical resource use (e.g., hospitalization and emergency department visit). The barrier most frequently identified by payers in implementing OBCs was evidence that OBCs reduced pharmacy spending (60%), while manufacturers identified the inability to obtain accurate data/outcome measures (73%) as a major limiting factor. Payers/manufacturers endorsed the use of easily measurable outcomes (91%/100%) as most important in establishing successful OBCs. Manufacturers, and to a lesser extent payers, indicated that regulations and legal issues need to be addressed to make progress in OBC implementation (e.g., safe harbor for preapproval health care economic information [77%/46%] and exemption of OBCs for best-price requirements [83%/51%]). The only exception was the clarification of regulations for discussing information outside of an FDA-approved label, in which both manufacturers and payers indicated a very strong need (100%) to be addressed. CONCLUSIONS: Surveyed AMCP members are interested in OBCs and recognize their alignment to societal health goals and health care affordability, although actual use of these contracts has been somewhat limited to date. Results from this survey indicate that there is potential for OBC use to increase as barriers and limitations are addressed. DISCLOSURES: This research was sponsored by the Academy of Managed Care Pharmacy and Xcenda. Duhig, Kaufman, and Hughes are employed by Xcenda. Saha is employed by the Academy of Managed Care Pharmacy. Smith has nothing disclose. Study concept and design were contributed by Duhig, Kaufman, Saha, and Hughes. Kaufman and Hughes collected the data, and data interpretation was performed by all the authors. The manuscript was written by Saha, Smith, and Duhig, along with Kaufman and Hughes.

Normalizing effective conflict management through academic curriculum integration: the example of workable peace.

An innovative program being implemented in U.S. school systems teaches youth to integrate the skills of conflict management beyond academics to their social and civic lives.