Cancer Informatics for Cancer Centers (CI4CC): Building a Community Focused on Sharing Ideas and Best Practices to Improve Cancer Care and Patient Outcomes.

Cancer Informatics for Cancer Centers (CI4CC) is a grassroots, nonprofit 501c3 organization intended to provide a focused national forum for engagement of senior cancer informatics leaders, primarily aimed at academic cancer centers anywhere in the world but with a special emphasis on the 70 National Cancer Institute-funded cancer centers. Although each of the participating cancer centers is structured differently, and leaders' titles vary, we know firsthand there are similarities in both the issues we face and the solutions we achieve. As a consortium, we have initiated a dedicated listserv, an open-initiatives program, and targeted biannual face-to-face meetings. These meetings are a place to review our priorities and initiatives, providing a forum for discussion of the strategic and pragmatic issues we, as informatics leaders, individually face at our respective institutions and cancer centers. Here we provide a brief history of the CI4CC organization and meeting highlights from the latest CI4CC meeting that took place in Napa, California from October 14-16, 2019. The focus of this meeting was "intersections between informatics, data science, and population science." We conclude with a discussion on "hot topics" on the horizon for cancer informatics

How Registries Can Help Performance Measurement Improve Care

Suggests ways to better utilize databases of clinical information to evaluate care processes and outcomes and improve measurements of healthcare quality and costs, comparative clinical effectiveness research, and medical product safety surveillance

Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study

Background: Advancing the use of genomic data with routinely collected health data holds great promise for health care andresearch. Increasing the use of these data is a high priority to understand and address the causes of disease.Objective: This study aims to provide an outline of the use of genomic data alongside routinely collected data in health researchto date. As this field prepares to move forward, it is important to take stock of the current state of play in order to highlight newavenues for development, identify challenges, and ensure that adequate data governance models are in place for safe and sociallyacceptable progress.Methods: We conducted a literature review to draw information from past studies that have used genomic and routinely collecteddata and conducted interviews with individuals who use these data for health research. We collected data on the following: therationale of using genomic data in conjunction with routinely collected data, types of genomic and routinely collected data used,data sources, project approvals, governance and access models, and challenges encountered.Results: The main purpose of using genomic and routinely collected data was to conduct genome-wide and phenome-wideassociation studies. Routine data sources included electronic health records, disease and death registries, health insurance systems,and deprivation indices. The types of genomic data included polygenic risk scores, single nucleotide polymorphisms, and measuresof genetic activity, and biobanks generally provided these data. Although the literature search showed that biobanks released datato researchers, the case studies revealed a growing tendency for use within a data safe haven. Challenges of working with thesedata revolved around data collection, data storage, technical, and data privacy issues.Conclusions: Using genomic and routinely collected data holds great promise for progressing health research. Several challengesare involved, particularly in terms of privacy. Overcoming these barriers will ensure that the use of these data to progress healthresearch can be exploited to its full potential

Balancing Access to Data And Privacy. A review of the issues and approaches for the future

Access to sensitive micro data should be provided using remote access data enclaves. These enclaves should be built to facilitate the productive, high-quality usage of microdata. In other words, they should support a collaborative environment that facilitates the development and exchange of knowledge about data among data producers and consumers. The experience of the physical and life sciences has shown that it is possible to develop a research community and a knowledge infrastructure around both research questions and the different types of data necessary to answer policy questions. In sum, establishing a virtual organization approach would provided the research community with the ability to move away from individual, or artisan, science, towards the more generally accepted community based approach. Enclave should include a number of features: metadata documentation capacity so that knowledge about data can be shared; capacity to add data so that the data infrastructure can be augmented; communication capacity, such as wikis, blogs and discussion groups so that knowledge about the data can be deepened and incentives for information sharing so that a community of practice can be built. The opportunity to transform micro-data based research through such a organizational infrastructure could potentially be as far-reaching as the changes that have taken place in the biological and astronomical sciences. It is, however, an open research question how such an organization should be established: whether the approach should be centralized or decentralized. Similarly, it is an open research question as to the appropriate metrics of success, and the best incentives to put in place to achieve success.Methodology for Collecting, Estimating, Organizing Microeconomic Data

The National COVID Cohort Collaborative (N3C): Rationale, design, infrastructure, and deployment.

OBJECTIVE: Coronavirus disease 2019 (COVID-19) poses societal challenges that require expeditious data and knowledge sharing. Though organizational clinical data are abundant, these are largely inaccessible to outside researchers. Statistical, machine learning, and causal analyses are most successful with large-scale data beyond what is available in any given organization. Here, we introduce the National COVID Cohort Collaborative (N3C), an open science community focused on analyzing patient-level data from many centers. MATERIALS AND METHODS: The Clinical and Translational Science Award Program and scientific community created N3C to overcome technical, regulatory, policy, and governance barriers to sharing and harmonizing individual-level clinical data. We developed solutions to extract, aggregate, and harmonize data across organizations and data models, and created a secure data enclave to enable efficient, transparent, and reproducible collaborative analytics. RESULTS: Organized in inclusive workstreams, we created legal agreements and governance for organizations and researchers; data extraction scripts to identify and ingest positive, negative, and possible COVID-19 cases; a data quality assurance and harmonization pipeline to create a single harmonized dataset; population of the secure data enclave with data, machine learning, and statistical analytics tools; dissemination mechanisms; and a synthetic data pilot to democratize data access. CONCLUSIONS: The N3C has demonstrated that a multisite collaborative learning health network can overcome barriers to rapidly build a scalable infrastructure incorporating multiorganizational clinical data for COVID-19 analytics. We expect this effort to save lives by enabling rapid collaboration among clinicians, researchers, and data scientists to identify treatments and specialized care and thereby reduce the immediate and long-term impacts of COVID-19

A national initiative in data science for health: an evaluation of the UK Farr Institute

ObjectiveTo evaluate the extent to which the inter-institutional, inter-disciplinary mobilisation of data and skills in the Farr Institute contributed to establishing the emerging field of data science for health in the UK.&#x0D; Design and Outcome measuresWe evaluated evidence of six domains characterising a new field of science:&#x0D; &#x0D; defining central scientific challenges,&#x0D; demonstrating how the central challenges might be solved,&#x0D; creating novel interactions among groups of scientists,&#x0D; training new types of experts,&#x0D; re-organising universities,&#x0D; demonstrating impacts in society.&#x0D; &#x0D; We carried out citation, network and time trend analyses of publications, and a narrative review of infrastructure, methods and tools.&#x0D; SettingFour UK centres in London, North England, Scotland and Wales (23 university partners), 2013-2018.&#x0D; Results1. The Farr Institute helped define a central scientific challenge publishing a research corpus, demonstrating insights from electronic health record (EHR) and administrative data at each stage of the translational cycle in 593 papers with at least one Farr Institute author affiliation on PubMed. 2. The Farr Institute offered some demonstrations of how these scientific challenges might be solved: it established the first four ISO27001 certified trusted research environments in the UK, and approved more than 1000 research users, published on 102 unique EHR and administrative data sources, although there was no clear evidence of an increase in novel, sustained record linkages. The Farr Institute established open platforms for the EHR phenotyping algorithms and validations (&gt;70 diseases, CALIBER). Sample sizes showed some evidence of increase but remained less than 10% of the UK population in primary care-hospital care linked studies. 3.The Farr Institute created novel interactions among researchers: the co-author publication network expanded from 944 unique co-authors (based on 67 publications in the first 30 months) to 3839 unique co-authors (545 papers in the final 30 months). 4. Training expanded substantially with 3 new masters courses, training &gt;400 people at masters, short-course and leadership level and 48 PhD students. 5. Universities reorganised with 4/5 Centres established 27 new faculty (tenured) positions, 3 new university institutes. 6. Emerging evidence of impacts included: &gt; 3200 citations for the 10 most cited papers and Farr research informed eight practice-changing clinical guidelines and policies relevant to the health of millions of UK citizens.&#x0D; ConclusionThe Farr Institute played a major role in establishing and growing the field of data science for health in the UK, with some initial evidence of benefits for health and healthcare. The Farr Institute has now expanded into Health Data Research (HDR) UK but key challenges remain including, how to network such activities internationally.</jats:p

The National COVID Cohort Collaborative (N3C): Rationale, design, infrastructure, and deployment

OBJECTIVE: Coronavirus disease 2019 (COVID-19) poses societal challenges that require expeditious data and knowledge sharing. Though organizational clinical data are abundant, these are largely inaccessible to outside researchers. Statistical, machine learning, and causal analyses are most successful with large-scale data beyond what is available in any given organization. Here, we introduce the National COVID Cohort Collaborative (N3C), an open science community focused on analyzing patient-level data from many centers. MATERIALS AND METHODS: The Clinical and Translational Science Award Program and scientific community created N3C to overcome technical, regulatory, policy, and governance barriers to sharing and harmonizing individual-level clinical data. We developed solutions to extract, aggregate, and harmonize data across organizations and data models, and created a secure data enclave to enable efficient, transparent, and reproducible collaborative analytics. RESULTS: Organized in inclusive workstreams, we created legal agreements and governance for organizations and researchers; data extraction scripts to identify and ingest positive, negative, and possible COVID-19 cases; a data quality assurance and harmonization pipeline to create a single harmonized dataset; population of the secure data enclave with data, machine learning, and statistical analytics tools; dissemination mechanisms; and a synthetic data pilot to democratize data access. CONCLUSIONS: The N3C has demonstrated that a multisite collaborative learning health network can overcome barriers to rapidly build a scalable infrastructure incorporating multiorganizational clinical data for COVID-19 analytics. We expect this effort to save lives by enabling rapid collaboration among clinicians, researchers, and data scientists to identify treatments and specialized care and thereby reduce the immediate and long-term impacts of COVID-19