Health Research Studies Research Articles

The Journey to a FAIR CORE DATA SET for Diabetes Research in Germany

The German Center for Diabetes Research (DZD) established a core data set (CDS) of clinical parameters relevant for diabetes research in 2021. The CDS is central to the design of current and future DZD studies. Here, we describe the process and outcomes of FAIRifying the initial version of the CDS. We first did a baseline evaluation of the FAIRness using the FAIR Data Maturity Model. The FAIRification process and the results of this assessment led us to convert the CDS into the recommended format for spreadsheets, annotating the parameters with standardized medical codes, licensing the data set, enriching the data set with metadata, and indexing the metadata. The FAIRified version of the CDS is more suitable for data sharing in diabetes research across DZD sites and beyond. It contributes to the reusability of health research studies.

How to address the barriers to meaningful adolescent involvement in health research: A qualitative study.

The under-involvement of adolescents in health research has been attributed to multiple barriers faced by both researchers and adolescents. Despite identifying these barriers, the literature offers few solutions, mostly from the perspective of researchers. To address this, we conducted a qualitative study to explore effective strategies to address these barriers from the perspective of both researchers and adolescents. We conducted semi-structured interviews with adolescents (n = 25) and researchers (n = 25) from 14 countries. We included adolescents aged 10-24 years with experience of contributing to health research studies and health researchers with experience of engaging adolescents in health research. The interviews explored the mitigation strategies to commonly reported barriers to meaningful adolescent involvement for researchers and adolescents. Data were analyzed using reflexive thematic analysis. We identified three overarching strategies to address the commonly experienced barriers to adolescent involvement. First, participants suggested the need to plan for adequate resources, organizational support, capacity building, accessibility, compensation, and adolescents' safety. Second, they recommended building relationships by engaging the community, fostering trust and respect with adolescents, promoting teamwork, and maintaining transparent communication. Third, they proposed making involvement engaging for adolescents by creating a conducive environment, increasing their representation, using interesting methods, and addressing power dynamics. These findings build on the current best practices for adolescent involvement in health research by highlighting which strategies should be incorporated early on to plan for and prevent potential challenges to adolescent involvement.

What the textbooks don’t teach about the reality of running a digitally enabled health study: a phenomenological interview study

BackgroundMost studies do not produce their intended outcomes on time or within budget. However, it is challenging to identify the facilitators and barriers to successful study management when the “behind the scenes action” of especially digitally enabled health research studies are akin to a black box. Therefore, it is necessary to explore first-hand experience of the facilitators and barriers to managing digitally enabled health studies. The goal of such studies is to produce new knowledge and/or develop tools that can be translated to real-world benefits for the health and care sector, individuals, and other stakeholders. These studies now exist in a time that encourages collaborative research activities with interdisciplinary research partnerships, industry collaboration, end-user involvement and insights for policy. These expectations require teams with different work cultures, methodologies, technologies, and approaches to work together, resulting in significant benefits but also challenges.ObjectivesTo explore the relationship between the dynamics and needs of research teams and the technology used to manage digitally enabled studies through the experience of those who worked on such studies.MethodsWe used an interpretive phenomenological approach to explore research team members’ experiences and perceptions of study management in the field of digitally enabled health research. We interviewed 15 research team members from eight studies. A semi-structured interview guide was used to explore concepts related to study activity management, team dynamics, resources and technologies used to manage research activities, and reflections of personal experiences. An adductive thematic analysis was performed on the transcripts.ResultsFive main themes were identified: 1) Project Team, 2) Study management, which included management technologies, 3) Study plan, 4) Intervention, 5) Participants. This paper focuses on the first two main themes. Sub-themes included: Roles and responsibilities, Methods, Changes, Challenges and solutions and Expectations vs. reality. Sub-themes were applicable to all main themes. Therefore, results were presented as knowledge gained from the interaction between sub-themes within each theme, i.e. referred to as “comprehensive insights” in the results section of this paper.ConclusionThis interview study provides new knowledge about the realities of working in collaborative, digitally enabled health research studies and demonstrates several opportunities for improved understanding of study management. More realistic and thorough understanding of the complex system in which digitally enabled health research exists can be applied to better prepare experienced researchers and newly graduated students entering the field, as well as improve existing strategies for management.

Abstract A110: The CaRE2 health equity center Contact Registry: Engaging underrepresented community participants in cancer research

Abstract Background: One of the most common barriers in community participant engagement in cancer research is lack of information, and at times, not being invited to participate. Contact Registries serve as a valuable tool to address this challenge, as they connect community members with cancer health research opportunities. Potential participants can choose to participate in studies they find of interest and are prime candidates for. The Florida-California Cancer Research, Education, and Engagement (CaRE2) Health Equity Center, Community Outreach Core (COC), developed a contact registry designed to engage Black/African American (B/AA) and/or Hispanic/Latinos/a (H/L) individuals in ongoing research studies conducted across our bicoastal center institutions which includes the University of Southern California Norris Comprehensive Cancer Center, the University of Florida, and the Florida Agricultural & Mechanical University. The CaRE2 Contact Registry was implemented in August 2022 by the CaRE2 COC, with the primary objective to increase the number of underrepresented minority individuals participating in cancer research. Methods: Individuals are recruited into the registry utilizing both in-person and online methods. Information is provided in English and Spanish, and data is stored on REDCap. For in-person enrollment, a consent form and OPT-IN survey is completed; our online recruitment utilizes additional screening questions to ensure eligibility. The COC in Florida and Los Angeles promote the registry at local community events and through social media accounts and website (https://care2healthequitycenter.org/the-care2-contact-registry/). A $10.00 physical or electronic gift card is provided as compensation. Results: As of April 30th, 2024, 1,328 individuals have enrolled in the Registry, with participants from FL (887 = 69.5%) and CA (389 = 30.5%); with 737 participants being B/AA (57.8%), 506 H/L (39.7%), 26 non-Hispanic White (2.0%), and 6 individuals self-identified as other race/ethnicity (0.5%). We enrolled 873 female (68.5%) and 402 male (31.5%) participants. A total of 90.4% of enrollees are willing to participate in health research involving surveys, 23% in health research studies requiring saliva (24.1%), hair (23.4%), or blood (22%) sample donations. When registrants were asked for future research interest 99.9% responded Yes. Conclusion: Community participants have a high interest in engaging in research studies regardless of race/ethnicity if its via surveys, attending focus groups, and/or joining community forums. There is greater hesitancy when asked to provide biospecimens (blood, hair or saliva). Mechanisms to understand the reasons for this hesitancy, and address them, to appropriately incentivize individuals about donation of biospecimens are needed. Community efforts that connect potential enrollees to cancer studies of interest can support increased participation in cancer research among B/AA and H/L communities. Citation Format: Carolina Aristizabal, Eduardo Ibarra, Fern Webb, IIeana Guzman, Brooke Hensel, John Luque, Rosa Barahona, Diana Wilkie, Mariana C Stern, Sandra Suther, Lourdes Baezconde-Garbanati. The CaREhealth equity center Contact Registry: Engaging underrepresented community participants in cancer research [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr A110.

Caregiver identity in health research: mothers of children with disabilities share their experiences with partnering on health research studies

Caregiver identity in health research: mothers of children with disabilities share their experiences with partnering on health research studies

Data integrity in an online world: Demonstration of multimodal bot screening tools and considerations for preserving data integrity in two online social and behavioral research studies with marginalized populations.

Internet-based studies are widely used in social and behavioral health research, yet bots and fraud from "survey farming" bring significant threats to data integrity. For research centering marginalized communities, data integrity is an ethical imperative, as fraudulent data at a minimum poses a threat to scientific integrity, and worse could even promulgate false, negative stereotypes about the population of interest. Using data from two online surveys of sexual and gender minority populations (young men who have sex with men and transgender women of color), we (a) demonstrate the use of online survey techniques to identify and mitigate internet-based fraud, (b) differentiate techniques for and identify two different types of "survey farming" (i.e., bots and false responders), and (c) demonstrate the consequences of those distinct types of fraud on sample characteristics and statistical inferences, if fraud goes unaddressed. We provide practical recommendations for internet-based studies in psychological, social, and behavioral health research to ensure data integrity and discuss implications for future research testing data integrity techniques. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Comparative insomnia prevalence between geriatrics lived in urban and rural areas: a multicenter nationwide study analysis

AimsInsomnia is a common complaint among older adults. However, the comparative prevalence between older adults living in urban versus rural areas remains under-researched. This study aims to validate the overall prevalence of insomnia among older adults in Indonesia and investigate the comparative prevalence between older adults living in urban and rural areas.MethodsThe data were derived from the 2018 Indonesian Basic Health Research Study. We included a total of 93,830 older participants aged > 60 years old who completed the insomnia questions. The prevalence and regression models were analyzed using the SPSS software.ResultsThe insomnia group has a higher age compared to the non-insomnia group (P < 0.05). Insomnia is more prevalent in females compared to males (P < 0.05). When classified by age groups (60–64, 65–69, 70–74, and > 75 years old), the prevalence of insomnia was 20%, 21%, 23%, and 24%, respectively. The prevalence of insomnia among older individuals living in rural areas was higher compared to those living in urban areas. In addition, increasing age, being female, unemployed, having comorbidities, being less active, and drinking alcohol are associated with insomnia symptoms.ConclusionThe findings of this study indicated that the prevalence of insomnia is high among older adults in Indonesia, with older adults living in rural areas exhibiting a higher prevalence compared to those living in urban areas. Our findings strengthen the importance of sleep management in clinical or community settings.

Mental Health and Mobile Communication Profiles of Crowdsourced Participants.

Major Depressive Disorder (MDD) and Generalized Anxiety Disorder (GAD) are highly prevalent and burdensome. To increase mental health screening rates, the digital health research community has been exploring the ability to augment self reporting instruments with digital logs. Crowdsourced workers are being increasingly recruited for behavioral health research studies as demographically representative samples are desired for later translational applications. Overshadowed by predictive modeling, descriptive modeling has the ability to expand knowledge and understanding of the clinical generalizability of models trained on data from crowdsourced participants. In this study, we identify mobile communication profiles of a crowdsourced sample. To achieve this, we cluster features derived from time series of call and text logs. The psychiatric, behavioral, and demographic characteristics were notably different across the four identified mobile communication profiles. For example, the profile that had the lowest average depression and anxiety screening scores only shared incoming text logs. This cluster had statistically significantly different depression and anxiety screening scores in comparison to the cluster that shared the most outgoing text logs. These profiles expose important insights regarding the generalizability of crowdsourced samples to more general clinical populations and increase understanding regarding the limitations of crowdsourced samples for translational mental health research.

An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken

BackgroundIn rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved.MethodsWe used auto-ethnographic narratives from parents and medical professionals in KHI to report on their experiences with co-produced health research. All co-authors wrote down their experiences in relation to three topics: time invested, work invested and power dynamics.ResultsWhilst the parents and health care professionals felt a new hope for (their) children with IKH, they also felt pressure to contribute time or to be flexible in how and when they dedicated time towards the organization. The power dynamics were characterised by a change in the relationship between the parents and medical experts; the parent being taught by the expert shifted to the expert learning from the lived experience of the parent. Both parents and medical experts struggled with maintaining boundaries and safeguarding their mental health.ConclusionOur findings call for the need to secure and prioritize funding for patient organizations, to enable them to create the sustainable architecture required for meaningful PPIE within these organizations. The morals and often deeply personal reasons for engaging with voluntary work in health research, can lead to overstepping of boundaries. As a result of our research, we call for the development of ethics of care guidelines within collaborative health research.

What determines informal care need among community-dwelling older adults in China? Results from a longitudinal study

BackgroundWith an intensified aging population and an associated upsurge of informal care need in China, there is an ongoing discussion around what factors influence this need among older adults. Most existing studies are cross-sectional and do not focus on older people living in the community. Conversely, this study empirically explores the factors that affect informal care need of Chinese community-dwelling older individuals based on longitudinal data.MethodsThis study constructed panel data using the China Health and Retirement Longitudinal Research Study (CHARLS) from 2011 to 2018 for analysis. Generalized linear mixed models were used to analyze the factors affecting reception of informal care, and linear mixed models were used to analyze the factors affecting informal care sources and intensity.ResultsDuring the follow-up period, 7542, 6386, 5087, and 4052 older adults were included in 2011–2018, respectively. The proportion receiving informal care increased from 19.92 to 30.78%, and the proportion receiving high-intensity care increased from 6.42 to 8.42% during this period. Disability (estimate = 4.27, P < 0.001) and living arrangement (estimate = 0.42, P < 0.001) were the critical determinants of informal care need. The rural older adults reported a greater tendency to receive informal care (estimate = 0.14, P < 0.001). However, financial support from children did not affect informal care need (P > 0.05).ConclusionsAt present, there is a great demand for the manpower and intensity of informal care, and the cost of informal care is on the rise. There are differences in informal care needs of special older groups, such as the oldest-old, living alone and severely disabled. In the future, the region should promote the balance of urban and rural care service resources, rationally tilt economic support resources to rural areas, reduce the inequality of long-term care resources, improve the informal care support system, and provide a strong community guarantee for the local aging of the older adults.

Research Ethics of Involving Adolescents in Health Research Studies: Perspectives From Australia

PurposeAdolescent participation in health research studies is critical yet complex given the lack of clarity around issues such as consent. This study aimed to understand how those conducting research in Australia navigate research ethics in health research involving adolescents, through qualitative interviews. MethodsPurposive sampling was used to recruit 23 researchers involved in adolescent health research using semi-structured in-depth interviews. Interviews were conducted via Zoom and audio-recorded after obtaining informed consent. Thematic analysis was used to construct themes and data were organised using NVivo. ResultsTwo contrasting positions emerged from the data: (1) framing of adolescents as inherently vulnerable, their participation in research understood in terms of risk and protection and (2) adolescent engagement in research is understood in terms of empowerment, emphasising their capacity to make decisions about research participation. We traced these positions through three key themes, particularly in relation to the role of ethics committees: (1) competing positions as a result of inferior or superior knowledge about adolescent lives, (2) competing positions resulting in a risk averse or an empowerment approach, and (3) reflections on processes of obtaining consent which involves gatekeeping and tokenism. DiscussionOur study highlights the contentious topic of navigating ethics committee requirements for the needs of adolescents. Majority of participants felt the current research ethics establishment is not favourable for researchers or adolescents themselves. While it is imperative that perceptions of ethics committees also be studied in the future, our study provides preliminary understanding of how experiences and perceptions shape how researchers interact with the research ethics establishment.

Analysis of Ifsi internship supervision activity through the prism of scaffolding and inquiry

The professional didactic offers a perspective to understand human activity and its adaptation to reality. Two master's research studies in health explored the activity of trainers in nursing training institute during nursing students' internships. These studies highlight the evolution of mentoring practices in the context of nursing education reform. The findings emphasize the importance of reflective guidance and inquiry to promote reflexivity and learning among nursing students. Thisapproach contributes to the professionalization of trainers and clinical mentors, facilitating the transition between theory and practice for students.

Lessons learned from a genetic counseling randomized clinical trial: Implications for recruiting individuals identifying as Asians in research.

1576 Background: Despite the clinical importance of genetic testing and counseling for cancer risk reduction and treatment, minority populations are less likely to receive genetic testing and counseling or participate in genetics research, contributing to health disparities. In a randomized study of three modes of genetic counseling (GC3) conducted in three safety net hospitals, we noted a lower accrual of participants identifying as Chinese despite the availability of language-concordant study documents and bilingual staff. To understand barriers to recruitment, we conducted a mixed methods study using responses to the San Francisco Mammography Registry (SFMR) Breast Health History questionnaire (used for recruitment for GC3) and qualitative interviews with seven participants of the genetic counseling study. Methods: We extracted data from the SFMR from 2014-2018 for patients self-identifying as Asian and a control group of patients self-identifying as White. The primary outcome was the proportion of patients who agreed to be contacted for future breast health research. Survey data included information for personal history of breast cancer, history of biopsy, first-degree relative with cancer, age, and level of education. Z-tests were conducted for comparisons between groups. For qualitative analysis, seven Chinese-identifying participants were interviewed to understand why they chose to participate in the genetic counseling study and identify potential barriers and facilitators. Results: We included 121,415 patients (n=38,483 Asian). Asian patients had significantly lower rates of accepting future contact for breast health research studies (25.4% for Asians vs. 48.3% for White, p&lt;0.0001). Lower rates were observed across Chinese (23.3%), Filipina (30.2%), Japanese (27.8%), and Vietnamese (23.3%) subgroups (p&lt;0.0001 for all). A history of breast cancer (personal or family) or biopsy was associated with higher rates of acceptance within both Asian and White groups (p&lt;0.001 for all comparisons). Education did not change participation rates as much in Asian patients as in White patients. The qualitative study found barriers across three domains: awareness, opportunity, and acceptance, with a referral from the participant’s medical team identified as a facilitator. Conclusions: Individuals identifying as Asian in the SFMR were less likely to agree to be contacted for future breast health research. We identified multilevel barriers through qualitative interviews. This has important implications for designing recruitment strategies for Asian populations.

Refining the CRiSPHe (checklist for reporting research using a simulated patient methodology in Health): a Delphi study.

A recent applicability study highlighted the need for the existing checklist for reporting research using a simulated patient methodology (CRiSP) to be clearer and user-friendly. The aim of this study was to update the checklist to address these concerns. A fourth round of the Delphi consensus study, used in the original checklist development work, was conducted. Previous participants, who had expertise in SP methodology, were invited to complete a questionnaire including a list of 13 checklist items developed in the previous study and revised following applicability testing. Closed questions were analysed for frequency. Consensus was predefined as >80% agreement. All items were discussed in a roundtable meeting and further modified as necessary. Responses to open questions were content analysed. Twenty-one authors participated. There was a statistical consensus in 12 out of 13 modified checklist items. A final reporting checklist for studies in health research using SP methodology has been developed using a consensus approach. Further refinements may be needed to increase the generalizability of the checklist in different contexts.

Mental Health During COVID-19: An Evaluation of Academic Universities' Contribution to Existing Research.

Increases in mental health problems have been observed during COVID-19 pandemic. Therefore, this topic of research became a priority, especially at the academic level. The objectives of this review were to summarize academic contribution to mental health research during the era of COVID-19. A scoping review of studies conducted at different academic institutions and examining alterations in mental health during the pandemic during the last three years was conducted. Fifty-five studies were included. These focused on different mental health changes that occurred in the era of COVID-19 such as changes in work habits or existing psychological conditions, COVID-19-related fear depression, anxiety and stress. Most of the included studies were observational (76.7%). The majority of the publications were published in Scimago Journal Rank Q1 journals (57.1%). The average number of citations per publication was 15.3 ± 30.13 [0-125]. The number of citations was higher in papers with international collaboration of authors (p = 0.031). Publications with COVID-19 as a main objective were more cited than papers not directly related to this subject (25.9 ± 39.45 vs 4.14 ± 3.2; p = 0.044). Mental health problems are a common response to the COVID-19 pandemic. The contribution of academic universities to different mental health research studies that took place during COVID-19 outbreak have underlined this reality. However, more representative research from other institutional settings will be needed, particularly in vulnerable populations.

Citizen science in environmental health research: A comparison with conventional approaches and creation of a guidance tool issued from the LILAS initiative

ContextPublic interest for citizen science (CS) in environmental health is growing. The goals of environmental health research projects are diverse, as are the methods used to reach these goals. Opportunities for greater implication of the civil society and related challenges differ at each step of such projects. These methodological aspects need to be widely shared and understood by all stakeholders. The LILAS initiative (acronym for “application of citizen science approaches such as LIving LAbS to research on environmental exposures and chronic risks”) aimed to 1) favor a mutual understanding of the main issues and research methods in environmental health, of their stakes for different actors, but also of the requirements, strengths and limitations of these methods and to 2) identify expected benefits and points of attention related to stronger degrees of participation as part of environmental health research projects. MethodsThe LILAS initiative gathered institutional researchers, academics and civil society representatives interested in environmental exposures. Five meetings allowed to collectively identify different types of environmental health research studies and reflect about the benefits, limitations, and methodological issues related to the introduction of growing citizen participation as part of such studies. An analytic table matrix summarizing these aspects was co-created and filled by participants, as a tool devoted to help stakeholders with the definition of future CS research projects in environmental health. ResultsFor different fields of research (e.g.: studies for assessment of environmental exposures, interventions on these exposures, quantitative risk assessment, epidemiological studies), the matrix lists expected benefits for various stakeholders, the fundamental principles of research methods and related practical constraints, but also advantages and limitations related to the use of CS or conventional research approaches. ConclusionThe LILAS initiative allowed to develop a tool which provides consolidated grounds for the co-creation of research projects on environmental exposures involving CS.

Using digital tools in clinical, health and social care research: a mixed-methods study of UK stakeholders

ObjectiveThe COVID-19 pandemic accelerated changes to clinical research methodology, with clinical studies being carried out via online/remote means. This mixed-methods study aimed to identify which digital tools are currently used...

Exploratory pedagogical research of a bespoke eye movement desensitisation and reprocessing therapy training for midwives

AbstractEye movement desensitisation and reprocessing (EMDR) therapy is a transdiagnostic, comprehensive, integrative, evidence‐based treatment intervention for post‐traumatic stress disorder (PTSD), complex PTSD, and perinatal PTSD. PTSD can arise from an experience of pregnancy or birth related trauma. Despite this, there is limited availability and access to EMDR therapy within the United Kingdom National Health Service. EMDR is a psychotherapeutic intervention which is usually delivered by highly specialist mental health professionals. However, with such a robust protocol, it is appropriate to consider if other health professionals should be trained to deliver EMDR. Humanitarian trauma capacity‐building projects in a global context have shown that task shifting can assist with addressing unmet mental health therapy needs. Midwives are highly skilled graduates working in the perinatal period who understand that women's emotional health is as important as their physical health. Therefore, it was proposed that EMDR knowledge and skills could be efficiently task shifted to midwives. The aim and objectives were to train midwives to deliver modified EMDR scripted protocols and techniques and explore qualitative and quantitative outcomes of a bespoke EMDR for midwives (EMDR‐m) educational programme. The online training was delivered to the midwives over 4 days with clinical practicums incorporated throughout. Pre and post‐tests demonstrated an increase in their EMDR knowledge, skills and confidence. EMDR Group Supervision provided by three experienced EMDR Accredited Practitioners was mandatory for 6 weeks post‐training and ongoing one‐to‐one supervision was made available. Midwives scored the course 9.6/10 (range 8–10) and described it as ‘amazing’ and ‘invaluable’. Challenges for the future include ring‐fenced time and an appropriate space to deliver the therapy. Those midwives who completed the training have progressed to deliver early EMDR‐m interventions in a perinatal mental health research study in their own Health and Social Care Trust (reported elsewhere).

Abstract 1003: Contact registry for health-related cancer research: Promoting inclusion in research

Abstract Contact Registries can serve as key tools in connecting community members to cancer health research opportunities. Members of underrepresented groups who enroll in a contact registry can choose to participate in studies they find interesting, provided they are an ideal candidate for participation. However, limited information exists regarding the types of studies underrepresented groups would want to participate in. The Florida-California Cancer Research, Education, and Engagement (CaRE2) Health Equity Center Community Outreach Core (COC) created a contact registry of community members self-identifying as Black/African American (B/AA) and/or Hispanic/Latinx (H/L) persons who are interested in learning about future research studies conducted at CaRE2 institutions. The CaRE2 Contact Registry was implemented in August 2022 by the CaRE2 COC, one of the six (6) key cores within the CaRE2 Center. COC’s primary objective is to increase the number of persons participating in cancer research, which ultimately produces findings more applicable to the broader, diverse population of B/AA and H/L communities in both Florida and California. Our study team promotes the registry at local community events and through our center’s social media accounts and website (https://care2healthequitycenter.org/the-care2-contact-registry/). Recruitment consists of both in-person and online methods provided in both Spanish and English with data stored on REDCap, an online data repository system. For in-person enrollment, a consent/authorization form and OPT-IN survey are completed; meanwhile, our online recruitment requires additional screening to ensure eligibility. Eligibility requires that the person resides in 1) either California or Florida, 2) be 18+ years old, and 3) identify as B/AA or H/L. In addition to collecting contact and demographic information, participants can choose their research study interests. For example, they can choose to participate in surveys, community forums, focus groups, a cancer advocacy training program, and/or to provide a hair, saliva, or blood sample. A $10.00 gift card, either in a physical or electronic format, was provided to each confirmed enrollee. As of November 13, 2023, 1,269 persons have enrolled, representing 63% of the 2,000 enrollment goal. While 92% of registry enrollees are willing to participate in health research involving surveys, only 20% are willing to participate in health research studies requiring saliva (23%), hair (22%), or blood (20%) donations. In conclusion, registry enrollees, regardless of race or ethnicity, have a high interest in participating in studies involving completing surveys or attending focus groups. However, efforts must continue to increase participation willingness for research involving biospecimen donation. Future efforts will also include connecting enrollees to cancer health-related research studies of their interest. Citation Format: Fern Webb, IIeana Guzman, Brooke Hensel, Eduardo Ibarra, Carolina Aristizabal, John Luque, Rosa Barahona, Diana Wilkie, Mariana C. Stern, Lourdes Baezconde-Garbanati, Sandra Suther. Contact registry for health-related cancer research: Promoting inclusion in research [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 1003.

Categorizing digital data collection and intervention tools in health and wellbeing living lab settings: A modified Delphi study

BackgroundHealth and Wellbeing Living Labs are a valuable research infrastructure for exploring innovative solutions to tackle complex healthcare challenges and promote overall wellbeing. A knowledge gap exists in categorizing and understanding the types of ICT tools and technical devices employed by Living Labs. AimDefine a comprehensive taxonomy that effectively categorizes and organizes the digital data collection and intervention tools employed in Health and Wellbeing Living Lab research studies. MethodsA modified consensus-seeking Delphi study was conducted, starting with a pre-study involving a survey and semistructured interviews (N=30) to gather information on existing equipment. The follow-up three Delphi rounds with a panel of living lab experts (R1 N=18, R2 - 3 N=15) from 10 different countries focused on achieving consensus on the category definitions, ease of reading, and included subitems for each category. Due to the controversial results in the 2nd round of qualitative feedback, an online workshop was organized to clarify the contradictory issues. ResultsThe resulting taxonomy included 52 subitems, which were divided into three levels as follows: The first level consists of 'devices for data monitoring and collection' and 'technologies for intervention.' At the second level, the 'data monitoring and collection' category is further divided into 'environmental' and 'human' monitoring. The latter includes the following third-level categories: 'biometrics,' 'activity and behavioral monitoring,' 'cognitive ability and mental processes,' 'electrical biosignals and physiological monitoring measures,' '(primary) vital signs,' and 'body size and composition.' At the second level, 'technologies for intervention' consists of 'assistive technology,' 'extended reality – XR (VR & AR),' and 'serious games' categories. ConclusionA common language and standardized terminology are established to enable effective communication with living labs and their customers. The taxonomy opens a roadmap for further studies to map related devices based on their functionality, features, target populations, and intended outcomes, fostering collaboration and enhancing data capture and exploitation.