Research Advisory Board Research Articles

Conflict of Interest Disclosure in Oncology: Preliminary Insights From the Global ONCOTRUST-1 Cross-Sectional Study.

Conflicts of interest (COIs) between oncologists and industry might considerably influence how the presentation of the research results is delivered, ultimately affecting clinical decisions and policy-making. Although there are many regulations on reporting COI in high-income countries (HICs), little is known about their reporting in low- and middle-income countries (LMICs). Oncology Transparency Under Scrutiny and Tracking (ONCOTRUST-1) is a pilot global survey to explore the knowledge and perceptions of oncologists regarding COI. We designed an online 27-question-based survey in the English language to explore the perceptions and knowledge of oncologists regarding COI, with an emphasis on LMICs. Descriptive statistics and the Consensus-Based Checklist for Reporting of Survey Studies guidelines were used to report the findings. ONCOTRUST-1 surveyed 200 oncologists, 70.9% of them practicing in LMICs. Median age of the respondents was 36 (range, 26-84) years; 47.5% of them were women. Of the respondents, 40.5% reported weekly visits by pharmaceutical representatives to their institutions. Regarding oncologists' perceptions of COI that require disclosure, direct financial benefits, such as honoraria, ranked highest (58.5%), followed by gifts from pharmaceutical representatives (50%) and travel grants for attending conferences (44.5%). By contrast, personal or institutional research funding, sample drugs, consulting or advisory board, expert testimony, and food and beverage funded by pharmaceutical industry were less frequently considered as COI. Moreover, only 24% of surveyed oncologists could correctly categorize all situations representing a COI. These findings underscore the importance of clear guidelines, education, and transparency in reporting COI in oncology. This hypothesis-generating pilot survey provided the rationale for ONCOTRUST-2 study, which will compare perceptions of COI among oncologists in LMICs and HICs.

Depicting oncologists' perceptions and knowledge of global disparities in conflicts of interest reporting: The ONCOTRUST-1 study.

9002 Background: Conflicts of interest (COI) between oncologists and the pharmaceutical industry might considerably influence how the presentation of the research results is delivered, impacting treatment decisions, and policy-making.While there are regulations on reporting COI in high-income countries (HICs), little is known about their reporting in low- and middle-income countries (LMICs).ONCOlogy TRansparency Under Scrutiny and Tracking (ONCOTRUST-1) is a pilot global survey to explore the knowledge and perceptions of oncologists regarding COI. Methods: We designed an online 27-question-based survey in English language to explore the perceptions and knowledge of oncologists regarding COI, with an emphasis on LMICs.Illustrative examples of COI were proposed, based on definitions from the American Society of Clinical Oncology (ASCO) and published literature. Descriptive statistics and the CROSS guidelines were used to report the findings. Results: ONCOTRUST-1 surveyed 200 oncologists, 70.9% of them practicing in LMICs. Median age of the respondents was 36 (range: 26-84) years; 47.5% of them were women. The median number of years of clinical practice was 9 (range: 1-51). 40.5% of respondents reported weekly visits by pharmaceutical representatives to their institutions. Regarding oncologists’ perceptions of COI that require disclosure, direct financial benefits, such as honoraria ranked highest (58.5%), followed by gifts from pharmaceutical representatives (50%) and support for attending conferences (44.5%). In contrast, personal or institutional research funding, sample drugs, consulting or advisory board, expert testimony, and food and beverage funded by pharmaceutical industry were less frequently considered as COI. Moreover, only 24% of surveyed oncologists could correctly categorize all situations representing a COI. Regarding support received from industry, 51.5% of respondents acknowledged trips to conferences as the most common form of support, followed by sample drugs (20.5%). Despite recognizing these interactions, 15% of respondents admitted feeling pressured to prescribe specific drugs due to their COI. Regarding COI reporting, a notable portion of participants indicated they report COI in their presentations (59%) or when publishing their research (30%). The presence of local regulations to manage COI were reported by 35.5% of respondents. The majority advocated for clearer policies and regulations (65%), training and education (63.5%), and an open COI database (55%) to improve COI reporting in oncology. Conclusions: These findings underscore the importance of clear guidelines, education, and transparency in reporting COI in oncology. This hypothesis-generating pilot survey provided the rationale for ONCOTRUST-2 study which will compare perceptions of COI among oncologists in LMICs and HICs.

Shared decision making for patients with kidney failure to improve end-of-life care: Development of the DESIRE intervention.

To describe the development of a shared decision making intervention for planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services. End-of-life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End-of-life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end-of-life conversations. Health professionals report needing more skills to raise the issue of end-of-life care options within consultations and patients want to be able to discuss issues important to them about future care plans. The development design was guided by the UK Medical Research Council's framework and a user-centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end-of-life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. DESIRE is intended to support shared decision making about planning end-of-life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. What problem did the study address? International guidelines recommend health professionals involve patients with kidney failure in making decisions about end-of-life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end-of-life care. What were the main findings? The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end-of-life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid. Where and on whom will the research have an impact? The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases. This intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist. Patients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript.

Abstract P233: Leveraging Community-Engaged Research Methods to Improve Recruitment and Retention of Midlife Black Women in Cardiovascular Research

Introduction: Midlife Black women (ages 45-64) are more likely to die of a cardiovascular disease (CVD)-related cause compared to White women of the same age and less likely to be optimally controlled for upstream chronic conditions like hypertension or dyslipidemia. Black women are also 58% less likely than White women to identify heart disease as their greatest health risk. Recruitment and retention of Black women in research trials has been historically difficult, contributing to the paucity of interventions designed to address the unique sociocultural factors that contribute to the existing health disparities. The Midlife Black Women’s Stress Reduction and Wellness intervention (B-SWELL) was created to lower stress and increase CVD awareness and adoption of healthy lifestyle behaviors to lower CVD risk in midlife Black women. Hypothesis We hypothesized that a theoretically based intervention co-developed with midlife Black women from the community would yield a culturally appropriate and appealing intervention, resulting in high retention, low attrition, and high satisfaction. Methods: Mixed methods and community-engaged methods were used in the preliminary research that supported the B-SWELL feasibility trial. Each step (i.e., conceptualization, development, intervention design and delivery) was viewed through a Black Feminist lens, giving voice to midlife Black women. The B-SWELL materials and content were co-developed with an existing community research advisory board (C-RAB) and midlife Black women from the community to produce a culturally tailored and targeted product that was rated highly by experts. A randomized feasibility study was conducted. Recruitment was led by the C-RAB and other community partners. Satisfaction was measured using a 9-item tool ranging from 1 (strongly disagree) to 5 (strongly agree) and a maximum score of 45. Narrative feedback responses were also obtained. Results: Recruitment (N=52) was completed within 30 days and attrition was low (8%). Four participants withdrew prior to the start of the feasibility trial. The remaining 48 participants completed the trial, and none were lost to follow up. Participant satisfaction ratings were high with a mean of 41. Narrative feedback responses were positive. Participant responses indicated an increase in CVD awareness and motivation to adopt healthier behaviors: “Sisterhood is very important to Black women's health." “Never too late in your life to make changes and better choices.” “I need to be a cheerleader and I need to be checked on as well". Conclusions: Theoretically based interventions that employ community-engaged methods have potential to increase recruitment and retention of midlife Black women in research studies. We recommend integration of community-engaged methods at each level of development and for delivery of interventions targeted to at-risk subpopulations like midlife Black women.

Engaging African American Faith Leaders as Partners in Ethical Research

This paper outlines an initiative to adapt the Community Partnered Research Ethics Training (CPRET) for the cultural context of the CHURCH (Congregation as Healers Uniting to Restore Community Health) project. The CHURCH project is a community-partnered participatory research project that seeks to promote the mental well-being of African American populations by developing, implementing, and evaluating a mental health training curriculum for faith leaders in Black churches. Participatory research, in which community stakeholders collaborate with researchers as equal partners to address problems impacting marginalized communities, has recently become more popular in academia. Training is necessary to equip community partners with the skills and knowledge required for full research participation. Community partners frequently encounter ethical issues in participatory research, but limited training resources are available to proactively prevent and address such issues. The CPRET was developed through a collaboration between the Clinical and Translational Science Institute and the Human Research Protection Office and Community Research Advisory Board at the University of Pittsburgh. It surveys research processes and core research ethics principles, and it stimulates discussion regarding best practices by engaging participants in scenario-based exercises in which they identify ethical and unethical research. By describing how we utilized the CPRET in the CHURCH project and presenting a summary of participant feedback, we aim to build resources for community-engaged scholars seeking to engage community members in ethical research.

Bridging the Gap: A Community Advisory Board Promoting Community Engagement in Cancer Research for Ethnically Diverse Populations.

Prostate cancer disproportionately affects Black men in the United States, leading to higher mortality rates and health disparities. In addition, based on historical mistreatment and discrimination and the resulting distrust of the medical system, Black populations are consistently underrepresented in health care-related research. Addressing these challenges requires community-driven approaches integrating diverse perspectives and fostering equitable health outcomes. This article describes the formation and impact of The Multidisciplinary Health Outcomes Research and Economics (MORE) Lab Community Advisory Board (CAB) at The University of Oklahoma Health Sciences. We purposefully recruited Black men with CaP and Black health care professionals to serve on a CAB and advise on ongoing research to address quality of life (QoL) issues in ethnically diverse Black CaP survivors. The CAB seeks to mitigate CaP disparities and improve health equity by empowering Black voices and promoting collaborative research practices. The MORE Lab CAB has successfully provided a venue for community members to contribute to designing a culturally relevant research program to improve the QoL in ethnically diverse Black men with CaP. The CAB has been instrumental in developing research goals and tools, implementing a series of town hall meetings to educate and support Black CaP survivors, and disseminating research findings. In conclusion, CABs are potentially critical in guiding research, enhancing community engagement, and advocating for culturally responsive health interventions.

Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study.

To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. A qualitative interview study. Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.

BUILDING LONG-TERM HIV SURVIVOR RESEARCH CHAMPIONS FOR PERSON-CENTERED CARE VIA COMMUNITY DISSEMINATION

Abstract As HIV becomes a chronic condition, it is critical for research to include the perspectives of long-term HIV survivors who face the challenges of managing both HIV and aging. We created SHARE (Survivors of HIV Advocating for Research Engagement), a nationwide research advisory board for long-term survivors. SHARE’s goal is to incorporate long-term HIV survivor voices into research to influence person-centered care for long-term survivors. Through SHARE, board members have built research capacity through research methods training culminating in the board conducting a community needs assessment to learn community-directed priorities for HIV and aging. Following the needs assessment, each board member worked to identify and conduct research dissemination activities within their own communities to engage others in conversations about aging and HIV and educate on opportunities for greater research involvement. In this paper presentation, the speakers describe the process of building capacity among SHARE members so that they could serve as research champions through community dissemination efforts. The presenters will describe the methods of community dissemination including lunch and learns, webinars, infographics, podcasts, photovoice, and advocacy. Mixed-methods analysis of the impact of research dissemination will be presented including changes in community member knowledge about research, willingness to participate in research studies, and understanding of tools to find and use research. The presenters will also share data from SHARE board member self-reflection on the challenges and opportunities for researchers to engage community member in dissemination activities that are tailored to the community and can influence adoption of research among end users.

Abstract A059: The role of conversational chatbots in enhancing shared decision making for African American men with early stage prostate cancer

Abstract Introduction : Enhancing shared decision making (SDM) for African American (AA) men with early stage prostate cancer using conversational chatbots (CCs) aims to improve communication, provide information, and empower them in their treatment decision making process. SDM is a collaborative approach that involves patients and healthcare providers working together based on medical evidence and patient preferences. However, AA men face significant disparities in prostate cancer (PCa) outcomes, including higher incidence and mortality rates compared to other racial/ethnic groups in the United States. Limited access to recommended PCa information and inadequate information during SDM conversations contribute to the challenges AA men face when making treatment decisions. The purpose of this study was to develop a conversational chatbot (CC) to provide PCa information in real time thus, enhancing SDM for AA men with PCa. Methods: The Ottawa Decision Support Framework and the International Patient Decision Aids Standards provided guidance and framework for the development of the CC. Our participatory research approach involved a diverse Community-Based Participatory Research Advisory Board (CBPRAB) consisting of twelve members. The CBPRAB included AA PCa survivors, AA men, caregivers, advocates, community leaders, and cancer care providers. Through training in research methods and focus group facilitation, CBPRAB members actively contributed their valuable insights, ensuring a collaborative and inclusive research process. Results: Five stakeholder focus groups (n = 44) comprising AA men, PCa survivors, spouses, healthcare professionals, and advocates provided valuable input for the development of the CC. In total, 819 questions were generated through interviews conducted during the focus groups. These questions were either inferred from the discussions or explicitly provided by the participants. The answers to these questions were developed from evidence based sources, such as the American Cancer Society and National Comprehensive Cancer Network Guidelines. An Android-based smartphone application that allows users to submit questions via speech was created. The application matches the user's question within the data set of 819 questions and provides answers in both voice and text formats. Conclusion : The Android-based smartphone application was alpha tested on four stakeholder focus groups (n=35). The CC developed in the smartphone application demonstrated the capacity to provide real time responses to user questions sourced from an 819-question database derived from our stakeholder focus groups. By offering evidence based information and directing users to additional resources if the question is not in the database, the CC can improve accessibility to medical information, thus enhancing the SDM process regarding early stage prostate cancer. Citation Format: Angela D. Adams. The role of conversational chatbots in enhancing shared decision making for African American men with early stage prostate cancer [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A059.

The Appa Health App for Youth Mental Health: Development and Usability Study.

Demand for adolescent mental health services has surged in the aftermath of the COVID-19 pandemic, and traditional models of care entailing in-person services with licensed mental health providers are inadequate to meet demand. However, research has shown that with proper training and supervision mentors can work with youth with mental health challenges like depression and anxiety and can even support the use of evidence-based strategies like cognitive behavioral therapy (CBT). In our increasingly connected world, youth mentors can meet with young people on a web-based platform at their convenience, reducing barriers to care. Moreover, the internet has made evidence-based CBT skills for addressing depression and anxiety more accessible than ever. As such, when trained and supervised by licensed clinicians, mentors are an untapped resource to support youth with mental health challenges. The objective of this study was to develop and assess the feasibility and acceptability of Appa Health (Appa), an evidence-based mental health mentoring program for youth experiencing symptoms of depression and anxiety. This paper describes the development, pilot testing process, and preliminary quantitative and qualitative outcomes of Appa's 12-week smartphone app program which combines web-based near-peer mentorship with short-form TikTok-style videos teaching CBT skills created by licensed mental health professionals who are also social media influencers. The development and testing processes were executed through collaboration with key stakeholders, including young people and clinical and research advisory boards. In the pilot study, young people were assessed for symptoms of depression or anxiety using standard self-report clinical measures: the Patient Health Questionnaire-8 and the Generalized Anxiety Disorder-7 scales. Teenagers endorsing symptoms of depression or anxiety (n=14) were paired with a mentor (n=10) based on preferred characteristics such as gender, race or ethnicity, and lesbian, gay, bisexual, transgender, queer (LGBTQ) status. Quantitative survey data about the teenagers' characteristics, mental health, and feasibility and acceptability were combined with qualitative data assessing youth perspectives on the program, their mentors, and the CBT content. Participants reported finding Appa helpful, with 100% (n=14) of teenagers expressing that they felt better after the 12-week program. Over 85% (n=12) said they would strongly recommend the program to a friend. The teenagers were engaged, video chatting with mentors consistently over the 12 weeks. Metrics of anxiety and depressive symptoms reduced consistently from week 1 to week 12, supporting qualitative data suggesting that mentoring combined with CBT strategies has the potential to positively impact youth mental health and warrants further study. Appa Health is a novel smartphone app aiming to improve the well-being of youth and reduce anxiety and depressive symptoms through web-based mentoring and engaging CBT video content. This formative research sets the stage for a large-scale randomized controlled trial recently funded by the National Institutes of Health Small Business Innovation Research program.

New York City's Community-Based Organizations and the COVID-19 Pandemic: A Descriptive Analysis of Local Organizations' Response Efforts and Their Role During Public Health Crises.

Community-based organizations (CBOs) are on the frontlines offering resources and support to residents during times of distress. Through a community-academic partnership, an interdisciplinary team developed, collected, and analyzed 91 surveys from social services providers across New York City assessing the impact of the COVID-19 pandemic on their organizations' operations. The majority (93%) of these organizations stayed open during the pandemic but had to shift the services they offered to meet new needs. Although most (89%) shared they were not offering on-site testing for COVID-19, 53% expressed interest in becoming a test site, citing needs such as funding, test kits, and skills-building for staff. More than half of the respondents were eager to get involved in public health efforts in other ways, such as joining local research advisory boards. Despite increasing the services they provided, CBOs saw decreases in staffing and volunteers. Furthermore, although nearly half (48%) received governmental aid, many faced financial pressures and several had to close offices during the pandemic. As trusted resources, CBOs can help meet public health needs if provided with proper support and resources. It is critical that those working in prevention and relief are considerate about how and when they leverage effective partnerships between public health organizations and CBOs, offering organizations the resources they need to be effective in this charge, given the role they can have in promoting health equity.

Development of an Implementation Blueprint to Scale-Up Contraception Care for Adolescents with Psychiatric Conditions in a Pediatric Hospital

Implementation blueprints are comprehensive plans that describe implementation strategies, goals, timelines, and key personnel necessary for launching new interventions. Although blueprints are a foundational step in driving intervention rollout, little is known about how blueprints are developed, refined, and used in practice. The objective of this study was to describe a systematic, collaborative approach to developing, refining, and utilizing a formal implementation blueprint for scaling up the Contraception Care at Behavioral Health Pavilion (CC@BHP) intervention for adolescents hospitalized in psychiatric units within a pediatric hospital in the United States. In Stage 1 (Planning/Preparation), we assembled a Research Advisory Board (RAB) of 41 multidisciplinary members and conducted a formative evaluation to identify potential barriers to CC@BHP implementation. Barriers were mapped to implementation strategies using the Consolidated Framework for Implementation Research (CFIR) and Expert Recommendations for Implementing Change (ERIC) tool and used to create an initial blueprint. In Stage 2 (Development/Implementation), RAB members used activity logs to track implementation activities over the 18-month study period, which were then mapped to formal implementation strategies used to further develop the blueprint. About 30% of strategies were situated in the ‘Train and Educate Stakeholders’ ERIC category, 20% in ‘Use Evaluative and Iterative Strategies,’ and 16% in ‘Develop Stakeholder Interrelationships’ category. In Stage 3 (Synthesis/Refinement), the final blueprint was refined, consisting of 16 goals linked to 10 strategies for pre-implementation and 6 strategies for implementation. Feedback on the blueprint emphasized the role of the project champion in translating the blueprint into smaller, actionable steps for implementers.

Editorial introductions.

Current Opinion in Pulmonary Medicine was launched in 1995. It is one of a successful series of review journals whose unique format is designed to provide a systematic and critical assessment of the literature as presented in the many primary journals. The field of pulmonary medicine is divided into nine sections that are reviewed once a year. Each section is assigned a Section Editor, a leading authority in the area, who identifies the most important topics at that time. Here we are pleased to introduce the Journal's Editors and Section Editors for this issue. EDITORS IN CHIEF Daniel A CulverDaniel A CulverDaniel A Culver, DO FCCP, graduated from The Ohio State University, USA, and then received his Doctor of Osteopathic Medicine degree from Heritage Ohio University College of Osteopathic Medicine, USA. He completed a rotating internship at South Pointe Hospital prior to Internal Medicine Residency and Pulmonary & Critical Care Medicine Fellowship at Cleveland Clinic, USA, where he has been a Staff Physician since 2005. Dr Culver is currently Chair of the Department of Pulmonary Medicine at Cleveland Clinic, and is the president of the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG). His clinical and research interests focus on diffuse parenchymal lung disease, and also on extrapulmonary manifestations of sarcoidosis. He is also engaged in teaching and training fellows and other trainees. Marjolein DrentMarjolein DrentProf. Marjolein Drent is currently guest senior researcher at the ILD Center of Excellence, St. Antonius Hospital, Nieuwegein, the Netherlands. She was a pulmonologist and member of the Center from 2015 till August 2022. In 2005, she was appointed as Professor of Interstitial Lung Diseases (ILD) at the Department of Pharmacology and Toxicology of the Faculty of Health and Life Sciences of the Maastricht University, the Netherlands. Her oration was entitled: ‘Breathtaking Inspirations’. She retired from that position in July, 2022 and is currently professor emeritus. She is also emeritus president of WASOG (World Association of Sarcoidosis and Other Granulomatous Diseases), and is now Chief Editor of Current Opinion in Pulmonary Medicine and associate editor of Sarcoidosis, Vasculitis, and Diffuse Lung Diseases. Furthermore, she is co-editor/guest editor of several sarcoidosis articles in international journals, and is a reviewer for a number of international journals. She has (co-) authored over 450 papers and book chapters. She has been deeply involved in the last decades with several educational assignments, organization of postgraduate courses, national and international congresses, guideline development, as well as clinical trials. She is widely recognized as the co-editor of several ILD and sarcoidosis-related e-learning modules for pulmonologists and ILD nurses. Prof. Drent is a sought-after speaker and has acted as such on more than 300 occasions, nationally and internationally. Her scientific interest is focused on sarcoidosis, fibrotic lung diseases, drug-induced ILD, quality of life, fatigue, and work-related sequalae. She is a member of the Foundation for Sarcoidosis Research (FSR) Advisory Board; the founder and chair of the ILD Care Foundation (ILD, including sarcoidosis; www.ildcare.nl); co-founder and member of the advisory board of the Dutch Pulmonary Fibrosis Patient Association; and honorary member of Sarcoidose.nl (Dutch Sarcoidosis Patient Association). She has been the (co)promotor of 14 PhD students. In 2012 she was nominated for the ‘World Sarcoidosis Person of the Year Award’ Dublin, Ireland, for her tireless research in defining the often immense psychological burden faced by patients and their families. She is an avid ambassador for Compassion for Care and the Youth Smoking Prevention Foundation. In 2016 she was appointed an Officer in the Order of Orange Nassau by Royal Decree. In 2022 she won the European Respiratory Society (ERS) Lifetime Achievement Award ILD 2022 (Assembly 12) for her outstanding contributions to the field of ILD. SECTION EDITORS Sadia BenzaquenSadia BenzaquenSadia Benzaquen, MD, FACP, FCCP, ATSF, DAABIP is the Chairman of Pulmonary, Critical Care, Sleep and Allergy at Einstein Medical Center, Philadelphia, USA. He is a Professor of Medicine at the Sidney Kimmel Medical College at Jefferson University, Philadelphia, USA. He is an expert in the interventional pulmonology field with extensive research and publications in lung cancer, pleural disease and ILD. Sara TomasettiSara TomasettiSara Tomassetti is currently Associate Professor of Respiratory Medicine at Florence University, Italy, and Head of Interventional Pulmonology Unit at Careggi University Hospital, Florence, Italy. She has extensive experience in all aspects of interstitial lung diaseses and interventional pulmonology, including cryobiopsy. She is a faculty member of the European Respiratory Society, and BOND National member for Italy of the European Association for Bronchology and Interventional Pulmonology. From a clinical research perspective, she has been the primary investigator (PI) of several sponsored and investigator initiated clinical trials on diagnosis and treatemnt of ineterstiatial lung diseases and idiopathic pulmonary fibrosis. She publishes on clinical research aspects of interstitial lung diseases and interventional pulmonology. She regularly reviews research and clinical manuscripts for international journals.

Progress and Changes

Dear Crystal Research & Technology readers, The Editorial of issue 1 is always the perfect opportunity to recap the last year, report on the progress of the journal, and announce some changes. Since the journal was founded back in 1966, we have a long journey to look back on (more details about the history can be found in the “55 Years of Crystal Research & Technology” editorial). For 57 years now, Crystal Research & Technology has been publishing original research and reviews in experimental, industrial and theoretical crystallography, crystal growth and modern materials science. In the very first Editorial, the editor wrote: “It is the conviction of the editors and the publisher that a ‘Journal of Experimental and Technical Crystallography’ thematically oriented in the manner indicated, will find a lively response because it is particularly committed to both research and application and thus to the connection between the two.” We can state that this, indeed, is still true and proves the success story of the journal. We are pleased to have published 110 articles in 2022 and would like to take this opportunity to mention some of the highlights here. As such, Table 1 shows a list of the most cited articles according to Web of Science in 2022, while Table 2 gives an overview of the most accessed articles in 2022. First-Principles Calculations of Electronic Structure and Optical Properties of Si-Doped and Vacancy β-Ga2O3 (Research Article) We are confident that Crystal Research & Technology has solidified, and will continue to strengthen, its position as an important journal in the field of crystal research. We are proud that Crystal Research & Technology has received one of the highest Impact Factors in its history, but in addition to this journal metric, Wiley signed the Declaration on Research Assessment (DORA) in May to include further metrics that measure levels of impact beyond citation value, including usage, re-use, reproducibility, peer review assessment, geographic reach, and public recognition through references in the media. That will enhance responsible research assessment practices and support our mission around open practices and transparency. With DORA, we will deliver more ways to assess and recognize research outputs, which in turn supports healthy scholarship and allows more researchers to thrive in their careers. Furthermore, the transition to open access (OA) continues to be an important driver for the publication of research results. For authors, there are various benefits, such as more downloads, more citations, and better Altmetric attention of their articles. Wiley has several agreements with Funders and Institutions to help authors publish open access and cover the associated Article Publication Charges. Authors who receive funding from an agency or institution with a Wiley Open Access Account do not pay directly. The charge is paid by the institution or funder. Authors whose institutions have paid the Wiley Open Access partner fee are eligible for a discount on the open-access publication charge, and on acceptance a discounted fee is payable by the author. If you are not sure about your institution or funding agency open-access policy: find out more with Wiley's Author Compliance Tool. Moreover, to make submitting as easy as possible, we now offer free format submission. Your time is valuable and should be spent on your research, not re-typing reference lists. Free format submission helps make getting your manuscript ready to submit easier and faster. During 2023, we look forward to publishing several Review articles on recent topics. We also look forward to a combined special issue of the 3rd International Symposium on Modeling of Crystal Growth Processes and Devices (MCGPD-2023) and the 2nd Indo-Japan Joint Workshop on Photovoltaics (IJWP-2023). Last but not least, we would like to welcome onboard our new Crystal Research & Technology Advisory Board members: Hanna A. Dabkowska, McMaster University, Canada Philomela Komninou, Aristotle University of Thessaloniki, Greece Zulipiya Shadike, Shanghai Jiao Tong University, China Jiayue Xu, Shanghai Institute of Technology, China Wenkun Zhu, Southwest University of Science and Technology Mianyang, China. We are well prepared and highly motivated to take the next steps into the future. With the help of our Advisory Board Members, Guest Editors, Reviewers, and of course, our Authors, we are confident that Crystal Research & Technology will have a great 2023 – and we already look forward to celebrating its 60th anniversary in three years. Best wishes to you all for a healthy and productive year 2023! On behalf of the editorial team, Marc Zastrow, Katy Lally, Heike Höpcke, Pejun Tu

Relationship of Clinical Symptoms, Comorbidities and Treatment Options along with Disease Outcomes in Individuals Tested for COVID-19 in Pakistan: A National Survey

Background: This web-based survey is done to collect and assess data from people tested for COVID-19 with PCR in Pakistan. Methods: This 3-month study is a cross-sectional online survey, conducted by Pakistan Islamic Medical Association (PIMA), Health Research Advisory Board (HealthRAB) and National Institute of Health (NIH). Data collection was done using Google Forms. People who were tested for COVID-19 using Polymerase Chain Reaction (PCR) were included in the study. The sample size of the study was 1,537. SPSS version 22 was used for data analysis. Results: Majority of the respondents belonged to the age group 20 - 39 years. The most common symptoms found were fever 633 (41%), cough 534 (34%), generalized body aches 432 (28%) and sore throat 392 (25%). The mean COVID-19 mental health score was 3.59 (SD: 5.808, range: 0-18). Treatment with antibiotics and painkillers had a strong correlation (p-value < 0.05) with the disease outcomes. The disease outcomes had moderate correlation (p-value < 0.05) with anti-allergy, steroids, plasma and oxygen therapy, and weak correlation (p-value < 0.05) with Antiviral and Antimalarial therapy. Out of the total respondents, 561 (36.1%) were cured from COVID-19, 14 (0.9%) were expired during/after hospitalization, 15 (1%) were still infected and 962 (62%) were not infected. Conclusion: Pakistani population has a better cure rate than some of its neighboring countries. However, further research in this area is required to draw a definite conclusion.

TRAINING RESEARCHERS TO CREATE RESEARCH ADVISORY BOARDS WITH OLDER ADULTS

Abstract The Sage Resource Project’s goal was to prepare researchers to use the Sage Resources to create Sage Model boards in order to continue to expand and amplify the voice of older adults in aging PCOR/CER research. Training researchers is essential to amplify the voice of older adults in research. This project culminated in the creation of a training manual as well as critical lessons learned for the advancement of engaged research with older adults receiving Long Term Services and Supports (LTSS). After developing a series of webinars for national dissemination, 5 research centers were identified as potential sites for intensive and tailored training on The Sage Model and, ultimately, two research centers completed the training with quite different approaches and results. This session will review the training that was developed as well as the lessons learned from training researchers on creating research advisory boards with older adults.

Forty years of investment in HIV research: progress towards ending the HIV pandemic and preparation for future pandemics.

Forty years of investment in HIV research: progress towards ending the HIV pandemic and preparation for future pandemics.

Rural Community Engagement for Mental Health

Community-engagement strategies have been used successfully in mental health research and have been proposed as ideal for addressing stigma associated with mental illness. However, little has been published about using a community-engaged approach to address mental health and associated stigma in rural communities. We aimed to develop a mental health patient-centered research community and advisory board for two rural communities in Michigan with the long-term goal of improving mental health care, self-management, and outcomes in these communities. The project used principles from community-based participatory research (CBPR) and patient-centered outcomes research (PCOR) models. Focus groups and the development of a mental health research advisory committee (MHRAC) were used to engage the community. Five focus groups were conducted with a total of 38 participants, including several individuals who self-identified as having mental health issues, to identify unmet mental health needs as well as available resources. MHRAC consisted of 24 volunteers and prepared written summaries from the focus group transcripts to identify key mental health themes expressed by participants in the focus groups. When comparing the original transcript to the focus group summaries compiled by MHRAC, we determined differences between the reports, but found stigma to be a common theme. This project served as a catalyst to prioritize and address selected mental health issues in these rural communities.

A Process Evaluation of Developing Older Adult Research Advisory Boards in Long-term Care Settings.

Enhancing the capacity of researchers, providers and older adults to collaborate in research is critical for promoting relevant, useful research findings. The Sages in Every Setting project aimed to disseminate a flexible model for developing research advisory boards (RABs) comprised of older adults receiving long-term services and supports (LTSS) via partnerships between academic researchers and LTSS providers. Process evaluation assessed the feasibility of using resources to develop RABs. Partners sought regular feedback from facilitators and RAB members, which was shared with the evaluator. The evaluator conducted regular debriefings with academic partners and observed some RAB meetings. The development of RABs was impacted by pre-existing collaborations, characteristics of providers, flexible use of the resources, facilitator capacity, member capacity, and researcher capacity. Developing RABs was feasible. Long-term partnerships between research institutions and LTSS providers that serve diverse populations could improve successful dissemination of this model.

EMPOWER Retinoblastoma: Engaging Patient Partners in Solving the Top 10 Priorities for Eye Cancer Research in Canada.

While it is recognized that research priorities should reflect and integrate the perspectives and needs of patients along with those of health professionals and researchers, it remains challenging to actualize such priorities into tangible research projects. Targeted dissemination is required to catalyze research on these priorities. To create awareness of and inspire action toward actualizing the top 10 retinoblastoma research priorities in Canada, Canadian Retinoblastoma Research Advisory Board (CRRAB) members developed a wide range of dissemination tools and processes. These resources, co-produced with patients, were instrumental to CRRAB sharing the top 10 priorities internationally to mobilize action toward solving them.