CBIIT’s Roadmap: A Look AheadCaterina E.M. Lasome, PhD, MBA, RN, CPHIMS

Chief Operating Officer

Center for Biomedical Informatics & Information Technology

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National Cancer Institute

Mission: Coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients

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Mission: Interconnect the biomedical enterprise with an interoperable, standards-based framework that bridges research and care, driving and enabling 21st century medicine in support of eliminating the burden of cancer.

Role:  CBIIT catalyzes and organizes a biomedical ecosystem – comprised of connectivity, content and community -- that dynamically drives knowledge and improves health.  

Vision: A learning health system in which ubiquitous information is appropriately accessed and utilized by all members of the biomedical enterprise to achieve pre-emptive, predictive, personalized and participatory medicine.

CBIIT

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21st Century Biomedical Paradigm:A “Learning Health System”

The diagram shows a person surrounded by a continuous cycle of targeted cancer care that includes a Bench and a Bedside category:

Pathology Clinical Outcomes Data Targeted Pharmaceuticals Cancer Treatments Leads to Bedside

Which then leads to Treatment and Care Genetic Data Surgical & Radiotherapeutic Technologies Laboratory Data Proteomic Data Which then leads to Bench and the cycle repeats itself

Personalized, Predictive, Pre-emptive, Participatory…

Unifies discovery, clinical research, and clinical care (bench-bedside-back) into a seamless continuum

Accelerates the time from discovery to patient benefit

Enables a health care system, not disparate “sectors” or “silos”

Empowers consumers to manage their health over a lifetime

Results in improved clinical outcomes

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Describing Complex Systems

From NCICB caBIG™ to CBIIT BIG Health:– More stakeholders

– More agendas

– More complexity

Multiple vertical levels of organization and horizontal processes which – in order to produce the system’s products-of-value for its stakeholders/user – cross vertical (interface) boundaries. (adapted from Ivar Jacobson)

Experience in multiple domains has repeatedly shown that complexity is most effectively managed through layering and use of standards at the “interface boundaries.”

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caBIG®: A Growing Community…

More than 2300 individuals from 740+ institutions

56 NCI-designated Cancer Centers

16 NCI Community Cancer Centers

1100+ Attendees at 2009 caBIG® Annual Meeting

Workspaces (18 Special Interest Groups)

Commercial Sector (15 licensed companies)

Four pictures of individuals attending the annual meetings and working at their workspaces

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Expanding Partnerships*…

Abbott Laboratories Astra Zeneca Cardiff University (UK)Center for the Development of Advanced Computing (CDAC – IN)CentocorCurie Institute (FR)Dublin Institute of Technology (IR)Drexel UniversityEli Lily Erasmus Medical Center (NL)FDAFriedrich Miescher Institute for Biomedical Research (CH)GenentechGenesis R&D Inc (NZ)Glaxo Smith Kline

Hiroshima University (JP)Imperial College of London (UK)INSERM (FR)MedarexMoscow State University (RU)National University of Singapore (SG)National Yang-Ming University (TW) Ontario Cancer Institute (CA)Pune University (IN)Queensland University (AU)Roche Holding AG (DE)Taiho Pharmaceutical Co., Ltd. (JP)TakedaTulane UniversityUniversity of Crete (CR)University of Edinburgh (UK)

* Not a complete list

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caBIG Community Organization

Shown are the caBIG(R) workspaces:– CTMS– ICR– TBPT– Imaging– VCD (E) – ARC (H)– DIS (C)

The ones that go up and down are cross-cutting:– VCD (E)– ARC (H)– DIS (C)

DISCARC

HVCDE

Imaging

TBPT

ICR

CTMS

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caBIG Community Organization

The Deployment community spans across all of the workspaces (CTMS, ICR, TBPT, Imaging, VCD (E), ARC (H), DIS (C)

DISCARC

HVCDE

Imaging

TBPT

ICR

CTMS

Deployment Community

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CBIIT Development:Bringing Standards to the Community

• CBIIT consumes and develops conformant standards-based specifications to resolve business problems

• CBIIT validates the applicability of specifications via reference implementations

• CBIIT informs the commercial and open-source vendor communities of the “state of the art” by deploying/handing off its reference implementations.

The diagram demonstrates how CBIIT brings standards to the community. They do so by:

1) Consuming and developing conformant standards-based specifications to resolve business problems

2) Validating the applicability of specifications via reference implementations

3) Informing the commercial and open-source vendor communities of the “state of the art” by deploying/handing off its reference implementations.

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Oncology-Extended EHR (caEHR): A collaborative national effort

American Society of Clinical Oncologists (ASCO) Initial evaluation of need (involving end-users) Engagement of vendor community (30) utilizing unique case scenarios Produced high-level requirements document as baseline

NCI Community Cancer Center Program (NCCCP) Oncology EHR Laboratory

cancer Biomedical Informatics Grid (caBIG®) – V2 Semantic infrastructure

Team in place, executing 3-month Release Cycles Iterative/incremental releases over 18-months Goals/deliverables aligned to meaningful use criteria Business capability priority recommendations by stakeholders, but

ultimately determined by the CBIIT Director Document lessons learned and adjust processes as needed

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Vision:

A biomedical system that synergizes the capabilities of the entire community to realize the promise of personalized medicine

Mission:

The BIG Health Consortium™ is a collaboration among stakeholders in biomedicine, including government, academe, industry, non-profit, and consumers, who come together in a novel organizational framework to demonstrate the feasibility and benefits of the personalized medicine paradigm.

Strategy:

Through a series of personalized medicine Projects, with an expanding number of collaborators, BIG Health will bootstrap a new approach in which clinical care, clinical research, and scientific discovery are linked.

Ecosystem: The BIG Health Consortium™

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A diverse biomedical ecosystem consists of categories:– Clinical Communities– Underwriters/Payors– Discovery Science– Information Technology

Within each category, there a components that link each category together to demonstrate a ecosystem.– Clinical Communities

• Researchers• Care Deliverers• Consumers/Patients

– Underwriters/Payors• Government• Foundations• Payers/Insurance Companies

– Discovery Science• Industry• Academia

– Information Technology• Electronic Health Records• Research Infrastructure

A Diverse Biomedical Ecosystem

Government Government

ResearchersResearchers

Clinical Communities

Discovery ScienceInformation Technology

Underwriters/Payors

CareDeliverers CareDeliverers

Consumers/PatientsConsumers/Patients

FoundationsFoundations

Payers / Insurance Companies

Payers / Insurance Companies

IndustryIndustry

AcademiaAcademia

Research Infrastructure Research Infrastructure

Electronic Health RecordsElectronic Health Records

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Working “Outside” the System: caBIG® and the Love Army of Women

Picture is of a group of women tagged with:

ONE million women, research goal, revolutionary opportunity.

Together we can prevent breast cancer.

caBIG® is partnering with the Love/Avon Army of Women to build the first online cohort of one million women, called the Health of Women (HOW) Study

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AOW/caBIG® Collaboration: Leveraging Web 2.0 for 21st Century Research

Members of AOW invited to join the HOW study and respond to periodic secure online questionnaires concerning health history

Authorized researchers access data and design study protocols based on clinical profiles and data of potential research participants

Database enables “interactive” and “dynamic” process – as researchers conceive new projects and women add more health information, new theories can be generated and additional opportunities for participation arise

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Lance Armstrong Foundation: Adolescent and Young Adult Biorepository

Objectives Build an infrastructure to support biospecimen collection, storage, and

sharing among academic sites Address patient privacy and intellectual property issues Integrate into a centralized portal

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CBIIT “BIG 3” Priorities for 2010 - 2011

1. Enterprise-Level Interoperability– Our applications, data, and analytic services

need the capacity to connect and meaningfully exchange information and coordinate behavior.

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CBIIT “BIG 3” Priorities for 2010 - 2011

2. Enterprise Security– Develop and implement a clear, integrated

enterprise strategy and operational tactics that unify and integrate our approach to security.

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CBIIT “BIG 3” Priorities for 2010 - 2011

3. Deployment Support– Comprehensively support the requirements of

the 21st-century healthcare community, including• On-going stakeholder identification and

management; and

• Development of technology-independent specifications and reference implementations of software that provides clear benefit to that community.

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Operational Imperatives for Success

Moving from historical silos to translational medicine continuum (i.e. value propositions, business case analyses)

– Know funding priorities & follow the money

Documented improvement in patient and population outcomes (i.e. meaningful use, comparative effectiveness)

Leverage lessons learned from early successes– Modify approaches to meet new requirements

• Problem-focused vs discipline-focused• Complexity is understood via the intersection of

dimensions (aspects) and perspectives disciplines, roles, etc.)

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Q & A