NHLBI BIODATA CATALYST ASSESSMENT

作为美国国立卫生研究院（NIH）内的第三大研究所，NHLBI的使命是为研究、培训和教育项目提供全球领导力，以促进心脏、肺部、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促进关于病因的基本发现，使基本发现能够转化为临床实践，促进对新兴科学家和医生的培训和指导，并向公众宣传研究进展。它与包括学术机构、行业和其他政府机构在内的私营和公共组织合作，创建并支持一个强大的协作研究基础设施。研究所与患者、家属、保健专业人员、科学家、专业学会、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，并利用资源解决公共卫生需要。国家卫生和社会福利部还与国际组织合作，帮助减轻全世界心脏、肺和血液疾病的负担。

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.