NHLBI BIODATA CATALYST ASSESSMENT

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.