Utilization of a Best Practice Alert (BPA) at Point-of-Care for Recruitment into a US-Based Autism Research Study

Simon, Andrea R; Ahmed, Kelli; Limon, Danica L.; Duhon, Gabrielle F.; Marzano, Gabriela; Goin‐Kochel, Robin P.

doi:10.1007/s10803-022-05444-y

Cited by 5 publications

(2 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Federman et al [53], 2017; Goehler et al [54], 2019; Horton et al [55], 2018; Howell et al [56], 2014; Klang et al [57], 2021; Li et al [58], 2020; Lindholm et al [59], 2010; Melnick et al [60], 2022; Milne Adult et al [61], 2020; Mitchell et al [62], 2022; Mulhem et al [63], 2020; Park et al [64], 2021; Ritchey et al [65], 2016; Rose et al [66], 2018; Ryan et al [67], 2021; Shelley et al [68], 2017; Sroujieh et al [69], 2016; Toscos et al [70], 2020; Toscos et al [71], 2020; Willis et al [72], 2022 Del Fiol et al [73], 2020; DeLozier [74], 2021; Jones et al [75], 2022; Jose et al [76], 2020; Keizur et al [77], 2022; Kolb et al [78], 2016; Lilih et al [79], 2017; Nikolic et al [80], 2017; Ray et al [81], 2018; Adult and pediatric Shelden et al [82], 2021; Siff and Emerman [83], 2016; Sonstein et al [84], 2014; Straub et al [85], 2013; Stutz et al [86], 2018; Tham et al [87], 2016; Wendel et al [88], 2023; Zorn et al [89], 2022 Tsai et al [90], 2015 Not specified Goldberg et al [91], 2016; Hojat et al [92], 2020; Simon et al [93], 2023; Tham et al…”

Section: Clinical Decision Supportmentioning

confidence: 99%

Use of Epic Electronic Health Record System for Health Care Research: Scoping Review

Chishtie,

Sapiro,

Wiebe

et al. 2023

J Med Internet Res

View full text Add to dashboard Cite

Background Electronic health records (EHRs) enable health data exchange across interconnected systems from varied settings. Epic is among the 5 leading EHR providers and is the most adopted EHR system across the globe. Despite its global reach, there is a gap in the literature detailing how EHR systems such as Epic have been used for health care research. Objective The objective of this scoping review is to synthesize the available literature on use cases of the Epic EHR for research in various areas of clinical and health sciences. Methods We used established scoping review methods and searched 9 major information repositories, including databases and gray literature sources. To categorize the research data, we developed detailed criteria for 5 major research domains to present the results. Results We present a comprehensive picture of the method types in 5 research domains. A total of 4669 articles were screened by 2 independent reviewers at each stage, while 206 articles were abstracted. Most studies were from the United States, with a sharp increase in volume from the year 2015 onwards. Most articles focused on clinical care, health services research and clinical decision support. Among research designs, most studies used longitudinal designs, followed by interventional studies implemented at single sites in adult populations. Important facilitators and barriers to the use of Epic and EHRs in general were identified. Important lessons to the use of Epic and other EHRs for research purposes were also synthesized. Conclusions The Epic EHR provides a wide variety of functions that are helpful toward research in several domains, including clinical and population health, quality improvement, and the development of clinical decision support tools. As Epic is reported to be the most globally adopted EHR, researchers can take advantage of its various system features, including pooled data, integration of modules and developing decision support tools. Such research opportunities afforded by the system can contribute to improving quality of care, building health system efficiencies, and conducting population-level studies. Although this review is limited to the Epic EHR system, the larger lessons are generalizable to other EHRs.

show abstract

Section: Clinical Decision Supportmentioning

confidence: 99%

Use of Epic Electronic Health Record System for Health Care Research: Scoping Review

Chishtie,

Sapiro,

Wiebe

et al. 2023

J Med Internet Res

View full text Add to dashboard Cite

show abstract

“…In particular, Black/African American individuals commonly cite concerns about racial discrimination and mistrust of healthcare/research staff as barriers to participation in genetic research [6][7][8][9], while Asian families report language barriers and a lack of information/resources available in their native languages [8]. Fortunately, recent studies leveraging tools within the electronic health record (EHR) for research recruitment demonstrate both (a) improved collaboration between healthcare providers and researchers and (b) increased engagement and retention of families of color in clinical research [10][11][12]. Efforts like these are critical for identifying effective recruitment strategies that counteract barriers to research participation and expedite study progress.…”

Section: Introductionmentioning

confidence: 99%

Evidence-based recruitment strategies for clinical research: Study personnel’s and research participants’ perceptions about successful methods of outreach for a U.S. Autism-Research Cohort

Goin-Kochel,

Lozano,

Duhon

et al. 2024

J. Clin. Trans. Sci.

Self Cite

View full text Add to dashboard Cite

Introduction: Under enrollment of participants in clinical research is costly and delays study completion to impact public health. Given that research personnel make decisions about which strategies to pursue and participants are the recipients of these efforts, we surveyed research staff (n = 52) and participants (n = 4,144) affiliated with SPARK (Simons Foundation Powering Autism for Knowledge) – the largest study of autism in the U.S. – to understand their perceptions of effective recruitment strategies. Methods: In Study 1, research personnel were asked to report recruitment strategies that they tried for SPARK and to indicate which ones they would and would not repeat/recommend. In Study 2, SPARK participants were asked to indicate all the ways they heard about the study prior to enrollment and which one was most influential in their decisions to enroll. Results: Staff rated speaking with a SPARK-study-team member (36.5%), speaking with a medical provider (19.2%), word of mouth (11.5%), and a live TV news story (11.5%) as the most successful strategies. Participants most often heard about SPARK via social media (47.0%), speaking with a medical provider (23.1%), and an online search (20.1%). Research personnel’s and participants’ views on effective recruitment strategies often differed, with the exception of speaking with a medical provider. Conclusion: Results suggest that a combination of strategies is likely to be most effective in reaching diverse audiences. Findings have implications for the selection of strategies that meet a study’s specific needs, as well as recruitment-strategy “combinations” that may enhance the influence of outreach efforts.

show abstract

Parental experiences and perspectives of healthcare providers' genetic testing recommendations for their children diagnosed with autism spectrum disorder in the United States

Zhao,

Li,

Chen

et al. 2024

Autism Research

View full text Add to dashboard Cite

Although genetic testing is recommended for all children diagnosed with autism spectrum disorder (ASD) in the United States, it remains unclear how many parents have received and followed these recommendations. This study aimed to assess parental experiences and perspectives of healthcare providers' genetic testing recommendations. A total of 1043 parents of children with ASD from Simons Foundation Powering Autism Research for Knowledge completed an online survey. Only about one‐third of the parents (34.2%) reported that their children's providers had recommended genetic testing. Factors associated with whether parents received these recommendations included the type of healthcare providers diagnosing ASD, parents' knowledge of genetic testing, the age of their children's diagnosis, and the presence of certain co‐occurring medical conditions in their children. Our study also revealed that most parents (76.9%) who received recommendations had pursued genetic testing for their children. Adherence to the recommendations was associated with the characteristics of the parents (i.e., age and employment status) and children (i.e., gender), and their trust in the information from providers. The findings highlight the critical role of healthcare providers in facilitating genetic testing among families of children with ASD. Healthcare providers are recommended to increase their competencies and practice in providing genetic testing recommendations for ASD, assist parents in navigating testing challenges, and support parents through the testing process.

show abstract

Utilization of a Best Practice Alert (BPA) at Point-of-Care for Recruitment into a US-Based Autism Research Study

Cited by 5 publications

References 16 publications

Use of Epic Electronic Health Record System for Health Care Research: Scoping Review

Use of Epic Electronic Health Record System for Health Care Research: Scoping Review

Evidence-based recruitment strategies for clinical research: Study personnel’s and research participants’ perceptions about successful methods of outreach for a U.S. Autism-Research Cohort

Parental experiences and perspectives of healthcare providers' genetic testing recommendations for their children diagnosed with autism spectrum disorder in the United States

Contact Info

Product

Resources

About