Browsing by Author "Lynch, Dustin"
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Item 167 Implementing a Community Researcher IRB Certification Through a Community-Engaged Approach(Cambridge University Press, 2022) Ott, Mary; Lynch, Dustin; Claxton, Gina; Pediatrics, School of MedicineOBJECTIVES/GOALS: A collaboration among Indiana CTSI community health partnerships (CHeP), bioethics, and regulatory programs identified and reviewed human research protection training programs targeting community engaged research, and pilot tested CIRTification with community partners working across a range of contexts. METHODS/STUDY POPULATION: We searched community human research protection training programs from across the county, identified three, examined each based upon criteria identified by community partners (time, relevance, online delivery) and our Human Research Protection Program (HRPP), and selected CIRTification (CIRT) to pilot. Ten community research partners volunteered to complete CIRT and a debriefing interview. Four completed CITI training previously. Participants included local and state-wide organizations, a resident, a state agency, and a hospital, and came from rural and urban communities. Interviews covered practical issues (ease of use, language, time), relevance, and comparison to CITI. Results were shared with HRPP for approval. RESULTS/ANTICIPATED RESULTS: Most felt CIRT was easy to navigate and engaging, and those who had done CITI felt CIRT was more relevant and engaging. The sections on historical background and recruitment were cited as most valuable. Suggestions were made to increase the diversity of examples beyond health care research. Community members mentioned several applications for CIRT including: (1) helping their own community work; (2) empowering them to be an advocate; (3) referring others to CIRT; (4) influencing approaches to recruitment and community engagement; and (5) applying ethics principles to their other community work. The Human Research Protection Program approved CIRT in place of CITI for community researchers. DISCUSSION/SIGNIFICANCE: Our process represents collaboration across the Indiana CTSI, HRPP and community partners, and use of best practices. Exemplifying “nothing about us without us”, actions were based on direct input from community partners, with the goal of decreasing barriers to engaging communities in research.Item 25012 Expanding Community Knowledge and Relationships for Congregation-Neighbor Health Connections and Advocacy in Indianapolis through a #HealthyMe Learning Community(Cambridge University Press, 2021) Craig, David; Gladden, Shonda; Christenson, Jacob; Lynch, Dustin; Campbell, Meredith; Hardwick, Emily; Wiehe, Sarah; Religious Studies, School of Liberal ArtsABSTRACT IMPACT: Congregations’ support for social, emotional, mental and spiritual wellness is foundational to human health and their community knowledge and presence can improve resilience and health in socially vulnerable neighborhoods. OBJECTIVES/GOALS: The Indiana CTSI Monon Collaborative is listening and understanding the most pressing health issues in the community and are working together to design and deliver community health solutions. We worked with our community ambassador to launch a health and wellness learning community for ten congregations seeking to build a health-connector network. METHODS/STUDY POPULATION: Study team used qualitative (interviews, focus groups, listening sessions, learning management system, participatory-design research) and quantitative (surveys) data collection methods in the development and ongoing implementation of the learning community. Study Population: Based on initial assessment of health and social vulnerability data within the Marion County neighborhoods in Indianapolis, community ambassador engaged congregations in more vulnerable neighborhoods to seek participation in learning community. Ten congregations signed a covenant of participation; learning community includes 10 clergy and 8 health advocates. RESULTS/ANTICIPATED RESULTS: Since the inception of the Learning Community in May 2020, we have developed a better understanding of the assets and barriers of LC participants around health and well-being. Through ongoing virtual gatherings (facilitated by community ambassador Good to the Soul), sharing of resources through our online modules on Canvas (LMS), and synthesis of data captured throughout our time together, LC participants have developed SMART goals which will inform priority setting for congregations to assist them in identifying the resources and connections necessary to drive forward solutions together as they seek out funding opportunities to support health improvement. DISCUSSION/SIGNIFICANCE OF FINDINGS: The learning community has provided a space and structure for congregations to align around a shared goal focused on health and wellness. Through regular gatherings we were able to connect people, organizations, and systems who were all eager to learn and work across boundaries leading to greater resilience in vulnerable communities.Item 4408 Using a human-centered design process to address challenges of engaging pregnant & parenting women with opioid use disorder(Cambridge University Press, 2020-07-29) Wiehe, Sarah; Lynch, Dustin; Moore, Courtney; Cockrum, Brandon; Hawryluk, Bridget; Claxton, Gina; Pediatrics, School of MedicineOBJECTIVES/GOALS: Using a human-centered approach, IDEO, a nationally-renown human-centered design team, and Research Jam, Indiana CTSI’s patient engagement core, integrated and tailored complimentary programs to address the challenges of engaging mothers with opioid misuse around the time of birth. METHODS/STUDY POPULATION: Gathered data through focus groups, site visits, and one-on-one interviews with key stakeholders: mothers in opioid use recovery, peer recovery coaches, and other people living with or directly affected by opioid use disorder (OUD). RESULTS/ANTICIPATED RESULTS: Themes emerged around stigma (e.g., constant judgment, majority of interactions focused on addiction, addiction comes from bad choices), the healthcare system (e.g., healthcare system bias and stigma, misalignment of services and timing of need, no support for support network), and relating to recovery (very variable but generally ambiguous and uncertain process and outcomes, importance of peer recovery coaches, importance of community resources). Identified themes were used to create insights that informed the underlying concepts of an engagement strategy including support and resources for recovery coaches, and education materials for mothers with OUD. One of human-centered design’s strengths is iteration, and the materials created for this have yet to be tested and refined thoroughly to be meaningful and lasting interventions. DISCUSSION/SIGNIFICANCE OF IMPACT: Considerable insights into the lived experience of those experiencing OUD and those who support these individuals yielded tangible ways to test improved engagement and recruitment of women with OUD at the time of birth.Item The Art of Diabetes Prevention Education in Youth(Office of the Vice Chancellor for Research, 2014-04-11) Pike, Julie; Smith, Lisa; Clapp, Sarah; Hannon, Tamara S.; Kester, Laura; Lynch, Dustin; Kuhstoss, Courtney; Sanematsu, HelenBackground: The obesity epidemic has led to an increase in type 2 diabetes as well as the precursor condition “prediabetes.” Prediabetes is defined as blood glucose or hemoglobin A1c levels higher than normal, but not high enough for diabetes. Approximately 30% of obese adolescents in the U.S. have prediabetes. Youth with prediabetes have significantly increased risk for developing type 2 diabetes. Literature demonstrates the significant impact of modest weight loss and physical activity on the prevention or delay of type 2 diabetes. Education on diabetes risk and initiation of lifestyle change is the primary treatment modality. Materials are needed to more effectively educate youth on diabetes progression and risk reduction while using consistent information from evidence-based behavior change methods. Objective: The Youth Diabetes Prevention Clinic is collaborating with the Herron School of Art and Design and a professional design firm to develop an effective tool for communicating the importance of preventing type 2 diabetes while using adolescent-friendly language, visually exciting graphics and relevant messaging. Methods: The team consists of physicians who specialize in adolescent diabetes, a registered dietician, health educators, and graphic design professionals. The project is being completed in four phases: exploration, design, analysis, and refinement. Results: Exploration: The design professionals conducted key personnel interviews and a clinic site visit to determine the appropriate product design. Design: A 16-page booklet was created to incorporate the use of age-appropriate graphics, medical language in lay terms, and cohesive messaging in one package. Analysis: Usability will be measured through user-group testing, key personnel interviews, pre and post knowledge assessments and readiness to change scales. Refinement: Messaging will be revised based on analytical findings. Conclusions: This collaboration exemplifies the benefit of a multidisciplinary approach in the development of patient-centered education materials and provides a framework for others when developing age-specific health communication strategies.Item Blood Sugar, Your Pancreas, and Unicorns: The Development of Health Education Materials for Youth With Prediabetes(Sage, 2018) Yazel-Smith, Lisa G.; Pike, Julie; Lynch, Dustin; Moore, Courtney; Haberlin, Kathryn; Taylor, Jennifer; Hannon, Tamara S.; Health Policy and Management, School of Public HealthBackground. The obesity epidemic has led to an increase in prediabetes in youth, causing a serious public health concern. Education on diabetes risk and initiation of lifestyle change are the primary treatment modalities. There are few existing age-appropriate health education tools to address diabetes prevention for high-risk youth. Aim. To develop an age-appropriate health education tool(s) to help youth better understand type 2 diabetes risk factors and the reversibility of risk. Method. Health education tool development took place in five phases: exploration, design, analysis, refinement, and process evaluation. Results. The project resulted in (1) booklet designed to increase knowledge of risk, (2) meme generator that mirrors the booklet graphics and allows youth to create their own meme based on their pancreas’ current mood, (3) environmental posters for clinic, and (4) brief self-assessment that acts as a conversation starter for the health educators. Conclusion. Patients reported high likability and satisfaction with the health education tools, with the majority of patients giving the materials an “A” rating. The process evaluation indicated a high level of fidelity and related measures regarding how the health education tools were intended to be used and how they were actually used in the clinic setting.Item Creation of a Decision Support Tool for Expectant Parents Facing Threatened Periviable Delivery: Application of a User-Centered Design Approach(Springer, 2019-06) Edmonds, Brownsyne Tucker; Hoffman, Shelley M.; Lynch, Dustin; Jeffries, Erin; Jenkins, Kelli; Wiehe, Sarah; Bauer, Nerissa; Kuppermann, Miriam; Obstetrics and Gynecology, School of MedicineBackground Shared decision-making (SDM) is optimal in the context of periviable delivery, where the decision to pursue life-support measures or palliation is both preference sensitive and value laden. We sought to develop a decision support tool (DST) prototype to facilitate SDM by utilizing a user-centered design research approach. Methods We convened four patient and provider advisory boards with women and their partners who had experienced a surviving or non-surviving periviable delivery, pregnant women who had not experienced a prior preterm birth, and obstetric providers. Each 2-h session involved design research activities to generate ideas and facilitate sharing of values, goals, and attitudes. Participant feedback shaped the design of three prototypes (a tablet application, family story videos, and a virtual reality experience) to be tested in a final session. Results Ninety-five individuals (48 mothers/partners; 47 providers) from two hospitals participated. Most participants agreed that the prototypes should include factual, unbiased outcomes and probabilities. Mothers and support partners also desired comprehensive explanations of delivery and care options, while providers wanted a tool to ease communication, help elicit values, and share patient experiences. Participants ultimately favored the tablet application and suggested that it include family testimonial videos. Conclusion Our results suggest that a DST that combines unbiased information and understandable outcomes with family testimonials would be meaningful for periviable SDM. User-centered design was found to be a useful method for creating a DST prototype that may lead to improved effectiveness, usability, uptake, and dissemination in the future, by leveraging the expertise of a wide range of stakeholders.Item “Do they REALLY trust us”?: Lessons from a volunteer research registry(Cambridge University Press, 2024-11-11) Sotto-Santiago, Sylk; Wiehe, Sarah; Hudson, Brenda; Slaven, James; Vinaixa, Conor; Bruns, Rebecca; Claxton, Gina; Delp, Lynsey; Lynch, Dustin; Moe, Sharon; Medicine, School of MedicineBackground: All IN for Health is a well-established community-academic partnership dedicated to helping improve the lives of Indiana residents by increasing health research literacy and promoting health resources, as well as opportunities to participate in research. It is sponsored by the Indiana Clinical and Translational Science Institute (I-CTSI). The study's purpose was to measure trust in biomedical research and healthcare organizations among research volunteers. Methods: The Relationship of Trust and Research Engagement (RTRE) survey was developed utilizing 3 validated scales. The RTRE consisted of 36 items in a 5-point Likert scale with three open-text questions. We conducted 3 focus groups with a total of 24 individuals ahead of the survey's launch. Recruitment was done through the All IN for Health newsletter. The survey was administered in the summer of 2022. Results: Six hundred and sixty-three individuals participated in the survey. Forty-one percent agreed that doctors do medical research for selfish reasons. Moreover, 50% disagree that patients get the same medical treatment regardless of race/ethnicity. Sixty-seven percent think it is safe to participate in medical research, yet 79% had never been asked to participate. Ten percent believe that researchers select minorities for their most dangerous studies and expose minoritized groups to diseases. Conclusion: The utilization of tools to measure trust will facilitate participant recruitment and will assist institutions and investigators alike in accountability. It is imperative, we work toward understanding our communities' trust in medical research, assessing our own trustworthiness, and critically reflect on the authenticity of our efforts.Item "I Am Interested!": The Voices of the Community and Their Participation in Health Advisory Boards(Mary Ann Liebert, 2024-01-08) Sotto-Santiago, Sylk; Wiehe, Sarah; Claxton, Gina; Stamper, Gavin; Delp, Lindsey; Hudson, Brenda; Lynch, Dustin; Moe, Sharon; Pediatrics, School of MedicineIntroduction: Researchers can often be challenged by meaningful efforts to involve the public and communities in research. Community and health advisory boards (HABs) offer an opportunity to create a fully intentional and honest relationship between researchers and the community. Objective: Most recently, the All Indiana (IN) for Health HAB had four openings and a call was published to our community of over 13,800 individuals in the All IN for Health newsletter. Four hundred eighty-eight individuals submitted applications to become part of the board. In what follows, we share the lessons in motivations and interests of individuals who responded. Methods: The application process included the following questions: What lived experiences and/or personal interests have motivated you to be involved in All IN for Health? Please explain why you are interested in being an All IN for HAB member. Our analysis approach was qualitative and centered on narrative research. Results: We organize the findings in two categories: Motivation and Interests. Individuals were motivated to participate based on family or friend diagnosis, personal diagnosis, roles as caregivers, desire to impact change and advocacy, role as health professional, and previous participation in research. Interests followed similar themes beginning with crediting their interest to a diagnosis. In addition, we categorized desire to share their experience, personal positionality, and previous research experience, and contributing to the education of student/trainee. Conclusion: By understanding motivations, we understand needs. This information can be used for other advisory boards, as well as recruitment into research participation and health care advocacy.Item Identifying Patient-Centered Outcomes for Caregivers and Children With Musculoskeletal Infections(Oxford University Press, 2022-12-12) Wood, James B.; Hawryluk, Bridget; Lynch, Dustin; Claxton, Gina; Russell, Kelsey; Bennett, William E., Jr.; Wiehe, Sarah E.; Carroll, Aaron E.; Pediatrics, School of MedicineBackground: Musculoskeletal infections (MSKI), including osteomyelitis and septic arthritis, are among the most common invasive infections in children and have the potential to cause significant morbidity. Guidelines have been developed to optimize care based on clinician-developed endpoints. Patient-centered outcomes have not been defined for children with MSKI. This study identified outcomes most important to caregivers and patients with MSKI. Methods: This was a single-center prospective qualitative study of children 6 months to 18 years of age hospitalized with MSKI from November 2019 to September 2021. Using design-research methods, patients and caregivers participated in interviews and/or completed journals to describe their experiences during acute infection and recovery from MSKI. Results: A total of 51 patient/caregivers were approached to participate in the study, 35 of whom declined to participate, resulting in 8 interviews conducted and 14 journals collected from 16 patient/caregivers. From these, a journey map was created highlighting points of stress during the onset of symptoms, through hospitalization, and returning home with new challenges. In addition, patient-centered outcomes were identified. For caregivers, these included managing mental health, managing responsibilities, and receiving support. Both caregivers and patients shared the importance of understanding of treatment plans and responsibilities. For patients, improving mental and physical health was important. Conclusions: Management of children with MSKI is complex and requires a multidisciplinary team approach. Validation of the outcomes identified and development of a measurement tool are needed. Addressing the patient-centered outcomes we identified in this study can greatly improve the holistic care of children with MSKI.Item Implementation of a Journal Prototype for Pregnant and Parenting Adolescents(2014-10) Bute, Jennifer J.; Comer, Karen; Lauten, Kathryn M.; Sanematsu, Helen; Moore, Courtney M.; Lynch, Dustin; Chumbler, Neale R.Teenage pregnancy and childbearing remain pressing public health issues that have garnered attention from public health officials and social services agencies. This paper reports on the initial implementation and formative evaluation of a journaling program used as a means of communicating health information to pregnant and parenting adolescents (young women age 15-19) while also providing participants with a means of self-expression. The journaling prototype was implemented in a community-based agency in the Midwest by Family Support Specialists (FSSs) who made home visits on a monthly basis to assist pregnant and parenting adolescents (n = 52) with successful family planning and public health education. A mixed method approach of qualitative (analysis of journals, field notes, and responses of semi-structured interviews with FSSs) and quantitative (questionnaires from pregnant and parenting adolescent respondents) data with purposive sampling was employed to evaluate the implementation of the journaling intervention. Twenty of the 52 study participants were pregnant when the journaling intervention was implemented, while 32 were not pregnant, but recently had a child and were currently parenting. Two core themes emerged from analysis of the data after the implementation of the journals: (1) usefulness of the journal and responsiveness to participants' information needs and (2) functionality challenges. The results offer practical starting points to tailor the implementation of journaling in other contexts. Further, areas for improvement emerged regarding the distribution timeline for the journal and the content of the journal itself. As such, we discuss the lessons learned through this collaborative project and suggest opportunities for future phases of the journal intervention.