NHLBI BIODATA CATALYST ASSESSMENT

NHLBI 生物数据催化剂评估

• 批准号: 10710116
• 负责人: BHANU REKEPALLI
• 金额: $ 29.22万
• 依托单位: BIOTEAM, INC.
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-05-12 至 2022-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10710116
• 关键词: Address; Adopted; Agreement; Architecture; Area; Automobile Driving; Biotechnology; Blood; Cloud Service; Collaborations; Communication; Communities; Complex; Computer software; Data; Data Commons; Development; Disease; Documentation; Ecosystem; Educational workshop; Ensure; Family health status; Feedback; Fostering; Funding; Goals; Government Agencies; Group Interviews; Health; Health Professional; Heart; Heart Diseases; Helping to End Addiction Long-term; Hematological Disease; Image; Image Analysis; Individual; Industry; Infrastructure; Institutes; Institution; International; Interview; Knowledge; Leadership; Lung; Lung diseases; Measurable; Mentors; Mission; Motion; National Heart, Lung, and Blood Institute; National Institute of Biomedical Imaging and Bioengineering; Outcome; Outcome Assessment; Patients; Pattern; Phase; Physicians; Plant Roots; Prevention; Privatization; Process; Professional Organizations; Public Health; Recommendation; Research; Research Infrastructure; Research Training; Resources; Scientist; Series; Services; Shapes; Sleep; Sleep Disorders; Strategic Planning; Surveys; System; Time; Training; Training and Education; Translations; United States National Institutes of Health; Vendor; Vision; Work; base; catalyst; clinical practice; cloud platform; community organizations; cost; data ecosystem; design; experience; improved; innovation; interest; interoperability; member; patient advocacy group; programs; service providers; success; system architecture; tool; usability

As the third largest Institute within the National Institutes of Health (NIH), the NHLBI mission is to provide global leadership for a research, training, and education program to promote the prevention and treatment of heart, lung, blood diseases, sleep disorders, and enhance the health of all individuals so that they can live longer and more fulfilling lives. The NHLBI stimulates basic discoveries about the causes of disease, enables the translation of basic discoveries into clinical practice, fosters training and mentoring of emerging scientists and physicians, and communicates research advances to the public. It creates and supports a robust, collaborative research infrastructure in partnership with private and public organizations, including academic institutions, industry, and other government agencies. The Institute collaborates with patients, families, health care professionals, scientists, professional societies, patient advocacy groups, community organizations, and the media to educate and promote the application of research results and leverage resources to address public health needs. The NHLBI also collaborates with international organizations to help reduce the burden of heart, lung, and blood diseases worldwide. Starting in 2017 the NHLBI funded a consortium in parallel with the NIH Data Commons Pilot Phase Consortium (DCPPC) to pursue the advancement of the goals of the DCPPC with an extended focus on heart, lung, blood and sleep research. When the DCPPC came to an end in 2019, the NHLBI funded consortium continued the work to develop what became the NHLBI BioData Catalyst (BDC). This program has shown some significant success but has been costly and complex to manage – in part because of its roots in the DCPPC. NHLBI is interested in an external assessment of the status of the Program, the architecture of the systems, the usability of the BDC for end users, and how improvements can be made to the Program and systems to better serve NHLBI and the scientific community. Many early-action questions need to be answered to help inform near-term general BDC directions and funding decisions: • What concrete steps can be taken to streamline and improve the coherence of the user experience (user support, training, architecture)? • Where is there redundancy in function within the BDC eco-system and how should that redundancy be addressed? • What strategy should we take to enable research analysis of scientific images by BDC users? • Should the BDC build its own tools, or leverage infrastructure/tools built by others (e.g. from NCI, NIBIB). • Does the BDC have the right expertise to guide this part of the Program? • How can BDC improve the rigor of Program management? While near-term questions will help BDC assess current state and begin to shape its strategy, the answer to other questions will help drive a roadmap BDC can follow and set into motion efficiently and effectively. Consideration of these longer term questions can help to that end: • Are the User Narratives/Epics/Stories driving the Program focused on the correct areas? • How should the BDC proceed to refine the architecture towards a more layered, API centric architecture with a more unified user interface? • Are there other stakeholders not currently in the Consortium that could bring innovation? • Can the BDC make better use of arrangements made through the NIH STRIDES initiative? The outcome of an assessment would is a near-term Executive Briefing Presentation (or presentations) meant to provide high-level strategic recommendations for NHLBI to consider that would include both short-term wins and longer-term strategies. Later phases of the assessment would provide a more detailed view of the BDC ecosystem and would offer a more complete strategy and potential roadmap towards the execution of that strategy.

作为美国国立卫生研究院（NIH）的第三大研究所，NHLBI的使命是为研究、培训和教育计划提供全球领导，以促进心脏、肺、血液疾病、睡眠障碍的预防和治疗，并增强所有人的健康，使他们能够活得更长，更充实。NHLBI促进关于疾病原因的基本发现，使基本发现转化为临床实践，促进新兴科学家和医生的培训和指导，并向公众传达研究进展。它与私营和公共组织（包括学术机构、工业和其他政府机构）合作，创建并支持一个强大的协作研究基础设施。该研究所与患者，家庭，医疗保健专业人员，科学家，专业协会，患者倡导团体，社区组织和媒体合作，教育和促进研究成果的应用，并利用资源来满足公共卫生需求。NHLBI还与国际组织合作，帮助减轻全球心脏，肺部和血液疾病的负担。 从2017年开始，NHLBI资助了一个与NIH数据共享试点阶段联盟（DCPPC）平行的联盟，以推进DCPPC的目标，并将重点扩展到心脏，肺，血液和睡眠研究。当DCPPC在2019年结束时，NHLBI资助的财团继续开发NHLBI生物数据催化剂（BDC）。该计划取得了一些重大成功，但管理成本高且复杂-部分原因是其根源在于DCPPC。 NHLBI有兴趣对该计划的状态、系统的架构、BDC对最终用户的可用性以及如何改进该计划和系统以更好地为NHLBI和科学界服务进行外部评估。需要回答许多早期行动问题，以帮助告知BDC的近期总体方向和资金决策： ·可以采取哪些具体步骤来简化和改善用户体验的一致性（用户支持，培训，架构）？ ·BDC生态系统中的功能冗余在哪里？应该如何解决这种冗余？ ·我们应该采取什么策略来使BDC用户能够对科学图像进行研究分析？ ·BDC是否应该构建自己的工具，或者利用其他人构建的基础设施/工具（例如 来自NCI、NIBIB）。 ·BDC是否拥有正确的专业知识来指导该计划的这一部分？ ·BDC如何提高项目管理的严谨性？ 虽然近期问题将帮助BDC评估当前状态并开始制定战略，但对其他问题的回答将有助于推动BDC遵循路线图并有效地启动。考虑这些长期问题有助于实现这一目标： ·用户叙述/史诗/故事是否推动计划专注于正确的领域？ ·BDC应该如何继续改进架构，使其成为一个更分层的、以API为中心的架构，并具有更统一的用户界面？ ·是否有其他利益相关者目前不在联盟中，可以带来创新？ ·BDC能否更好地利用通过NIH EPDES倡议做出的安排？ 评估的结果将是一个近期的执行简报演示文稿（或演示文稿），旨在为NHLBI提供高级别的战略建议，供其考虑，其中包括短期胜利和长期战略。评估的后期阶段将提供对BDC生态系统的更详细的看法，并将提供更完整的战略和执行该战略的潜在路线图。