Understanding the impact of an EHR-integrated hereditary cancer risk assessment application on patient-provider communication

了解 EHR 集成遗传性癌症风险评估应用程序对患者与提供者沟通的影响

基本信息

批准号：
10831167
负责人：
LAURIE Hollis GLIMCHER
金额：
$ 10万
依托单位：
DANA-FARBER CANCER INST
依托单位国家：
美国
项目类别：
财政年份：
2023
资助国家：
美国
起止时间：
2023-09-01 至 2023-11-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10831167
关键词：
Address Affect Algorithms Appointment Area Assessment tool Cancer Biology Cancer Center Cancer Detection Cancer Science Cancer-Predisposing Gene Caring Clinical Clinical Trials Collaborations Collection Communication Dana-Farber Cancer Institute Demographic Factors Development Early Diagnosis Early identification Electronic Health Record Eligibility Determination Endometrial Carcinoma Epidemiology Equity Evaluation Family Family history of Feeling Funding Future Genetic Genetic Counseling Genetic testing for cancer risk Geography Goals Guidelines Health Healthcare Hereditary Malignant Neoplasm Hereditary Neoplastic Syndromes Hereditary Nonpolyposis Colorectal Neoplasms Human Individual Inherited Intervention Interview Malignant Neoplasms Medical Records Methods Modeling Morbidity - disease rate Mutation Oncogenes Oncology Patient-Focused Outcomes Patients Persons Prevention Primary Care Principal Investigator Provider Publishing Recommendation Recording of previous events Reporting Research Resources Risk Risk Assessment Risk Reduction Risk-Benefit Assessment Role Screening for cancer Structure Surveys Syndrome Technology Testing Time Visit Vulnerable Populations Work Writing assessment application barrier to care cancer care cancer genetics cancer risk cancer therapy care delivery clinical care clinical decision support clinical practice colon cancer risk data management design eHealth effective intervention electronic health data electronic health record system future implementation gene panel genetic testing health application improved innovation insight interest lifetime risk literacy mortality multidisciplinary new technology non-genetic novel strategies patient-clinician communication patient-level barriers personalized approach premalignant programs response support tools technological innovation testing uptake tool underserved community uptake

项目摘要

This application is being submitted in response to the Notice of Special Interest (NOSI) identified as NOT-CA- 23-041. Our current approach to cancer care remains reactive, with late presentation of many patients. Though innovation is rapidly advancing, effective interventions are often not perpetuated into practice. The Program in Cancer Risk, Prevention, and Early Detection (CaRPED) of the Dana-Farber/Harvard Cancer Center (DF/HCC) arose out of growing recognition of the importance of bridging technology with DF/HCC expertise in cancer science to detect cancer at earlier stages, when interventions are most effective. The Cancer Care Delivery Research (CCDR) program was designed to investigate strategies to improve care delivery to ensure that interventions that theoretically can work based on clinical trials, do work in the context of oncology practice, and that vulnerable populations are not left behind. The Principal Investigator is co-leader of the CaRPED program and has led the development of the PREMM models (funded by RO1CA132829, 2008- present). The PREMM5 algorithm assesses for one of the most common hereditary cancer syndromes, Lynch syndrome (LS), which affects 1 in 279 people and causes high lifetime cancer risk. PREMM5 is now the guideline-recommended standard for assessing LS risk. We have recently developed a literacy-adapted, patient-facing hereditary cancer risk assessment app based on PREMM5. When embedded in the electronic health record (EHR), PREMM5 was able to identify a large number of at-risk patients, however, three quarters of at-risk patients eligible did not receive genetics referral or testing. To optimize the benefit of risk assessment, it is critical to understand the role of the PREMM5 app as a clinical decision support tool and patient-provider communication support tool in clinical practice. This proposed supplemental project represents a collaboration between the DF/HCC CaRPED and CCDR programs and the Survey and Data Management Core and will investigate the role of PREMM5 in patient-provider communication through evaluation of patient outcomes in order to identify key areas for improvement. We will used a mixed-methods approach – in Aim 1 we will quantitatively assess whether there are associations between demographic factors and patient outcomes, including discussion of PREMM5 during the clinical visit, referral receipt, referral uptake, and genetic testing uptake in individuals who chose to proceed with genetics referral versus those who didn’t. In Aim 2, we will use in-depth semi-structured interviews with at-risk patients per their PREMM5 scores and their providers to elucidate key barriers and facilitators to use of PREMM5 as a communication support tool to facilitate downstream care. The result will be a more equitable and clinically useful version of PREMM5 that can be implemented DF/HCC-wide to improve patient-provider communication about risk for LS. Further, we plan to use insights gained in this study to guide development of a multi-gene panel patient-facing risk assessment tool (PREMMplus) to assess risk for 19 hereditary cancer genes.

该申请是为了响应特殊利益通知（NOSI）而提交 23-041。我们目前的癌症护理方法仍然具有反应性，许多患者迟到了。尽管创新正在迅速发展，有效的干预措施通常不再存在于实践中。该程序在 Dana-Farber/Harvard Cancer Center的癌症风险，预防和早期检测（CARPED）（DF/HCC）源于对具有DF/HCC专业知识的桥接技术重要性的认识日益认识当干预措施最有效时，在早期阶段检测癌症的癌症科学。癌症护理交付研究（CCDR）计划旨在调查改善护理交付的策略以确保理论可以根据临床试验进行的干预措施，在肿瘤学的背景下进行起作用练习，脆弱的人群并没有被抛在后面。首席研究员是 Carped计划并领导了Premm模型的开发（由RO1CA132829资助，2008年 - 展示）。最常见的遗传癌综合征之一的PREMM5算法评估Lynch 综合征（LS），影响279人中有1人，并导致终身癌症的高风险。 PREMM5现在是指南推荐评估LS风险的标准。我们最近开发了一个适应扫盲的人，基于PREMM5，面向患者的遗传性癌症风险评估应用程序。当嵌入电子健康记录（EHR），PREMM5能够识别大量高危患者，但是，四分之三符合条件的高危患者未接受泛型转诊或测试。优化风险的好处评估，重要的是要了解Premm5应用程序作为临床决策支持工具的作用和临床实践中的患者支持者沟通支持工具。这个拟议的补充项目代表 DF/HCC Cared和CCDR计划与调查和数据管理之间的合作核心，并将通过评估患者调查PREMM5在患者提供者沟通中的作用结果是为了确定改进的关键领域。我们将使用混合方法方法 - 在AIM 1中我们将定量评估人口因素和患者之间是否存在关联成果，包括临床访问期间Premm5的讨论，推荐收据，推荐吸收和选择进行遗传学转介的个体与未进行遗传学的人的基因测试摄取。 AIM 2，我们将根据其Premm5分数对处于危险的患者进行深入的半结构化访谈及其提供者阐明关键障碍和促进者将PREMM5用作通信支持工具促进下游护理。结果将是PREMM5的更公平且临床上有用的版本可以实施DF/HCC范围的范围，以改善有关LS风险的患者提供者的沟通。此外，我们计划使用本研究中获得的见解来指导与患者面向多个小组的开发风险评估工具（Premmplus）评估19个遗传癌基因的风险。