Proposal of R@MAP Chair Clinical Research Informatics

1. Proposal of R@MAP Chair Clinical Research Informatics

2. W. Hersh, OHSU

3. Biomedical informatics in translational medicine Indra Neil Sarkar, PhD, MLIS University of Vermont

4. Depts. of HBI • Vanderbilt MS – 60 Faculty, 7 professors • Johns Hopkins DHSI 55 Faculty, 8 professors • Stanford MS- 53 Faculty, 6 professors • Columbia - D 44 Faculty, 7 professors • Oregon HSU - D 35 Faculty, 9 professors (with clinepi) • Arizona State U. – 35 Faculty, 6 professors • Utah U. – SoM 24 Faculty, 8 professors • U. Washington – D 19 Faculty, 7 Professors (with Education) • Harvard MS – CBI - 11 Faculty, 4 professors

5. Proposal of R@MAP Chair Clinical Research Informatics Fields of Research Codes: • 0807 (02) (Health Informatics) • 111711 (Health Information Systems) • 1117 (Public Health and Health Services) Position of Enabling Fellow at the Professor level E position.

6. Proposal of R@MAP Chair Clinical Research Informatics • The University has recently established a collaborative Health and Biomedical Informatics Centre (HaBIC), with support from the Faculty of Medicine, Dentistry and Health Sciences, the School of Engineering and IBES. • The new position would be based at the Melbourne Medical School, reporting to the Director of the Centre. • This Chair would contribute to consolidate the academic structure of HaBIC, currently based on a single professorial position (level E) supported by academic staff at levels C and B.

7. Proposal of R@MAP Chair Clinical Research Informatics • The proposed Chair would lead the research agenda of HaBICin the domain of clinical and translational research informatics and implementation science. • Clinical research informatics (CRI) is the application of informatics principles and techniques to support the spectrum of activities and business processes that instantiate clinical research, contributing to the development of a clinical research environment. • CRI is a sub-discipline of health informatics, which addresses • clinical practice standards • patient safety and health services quality issues • This emerging discipline encompasses several themes including • policy issues, • health services research and • education

8. Proposal of R@MAP Chair Clinical Research Informatics • With opportunities for collaboration arising from the new strategy in Health IT from the Victorian Department of Health, the Chair would play a pivotal role in providing expert input and leadership into government, contributing to shape e-health policy priorities and goals. • The merging together of clinical care delivery and clinical research represents a new paradigm which poses immense challenges in the context of rapid innovations in technology and explosions of data sources, types, and volume (big data).

9. Proposal of R@MAP Chair Clinical Research Informatics • The Chair would catalyse the development of successful research, education and engagement activities in this space, with a particular attention to topics such as: • informatics approaches to participant recruitment, • data management and systems in clinical research, • clinical research information platforms, • data quality in clinical research, • patient-reported outcome data,   • patient registries, • electronic health records, • clinical trials registries and • results databases.

10. CATS (Clinical and Translational Sciences)

11. CTR in the US – 60 CTSA in 30 states The mission of the CTSA program includes providing infrastructure support to facilitate translational research, promoting training and career development for translational researchers, and developing innovative methods and technologies to strengthen translational research.

14. UW Institute for Clinical and Translational Research

15. Transdisciplinary paths – research teams BIOMEDICAL INFORMATICS Facilitate structured, standardized, anonymized clinical data sets for research Bench (Bioscientist) WHAT Bedside (Clinician) Population (Epidemiologist) HOW Society at large (Health services researcher) Translate basic research findings into clinical solutions Evaluate the efficacy of Interventions across communities WHY Assess impact on health policies

16. Proposed structure for CATS@UoM

17. Hospital and Campus-based units • Hospital-based units within CATS will provide support for: • study design and execution (including of clinical trials); • biomedicaldata management (including of clinical registries) and analyses; • health services research; and • short-course training in clinical and applied research methods. • Campus-based units will provide support for • health economics; • health informatics; • translation of research output to public health practice and health policy; and formal training (eg, Master of Public Health).

18. Delivery of CATS services • Initial contact with units located at the clinicalpartner sites, but all requests for research support will be coordinated by a central administrative officelocated on campus. • Administrative responsibilities will be undertaken by a full-time manager and at least 1 full-time administrative assistant. • Aunified web portal (gateway) will provide: • a catalogue of relevant skills, tools and resources available • an interface forusers • a mechanism for dissemination of results and achievements • CATS will also host regular ‘research studios’, at which research ideas are presented, and input is provided by representatives ofthe six core services.

19. The Informatics Platform • MICATS will combine skills, resources and tools in health informatics to facilitate systematic data acquisition and transformation services. • GRHANITE™ (University of Melbourne) - data linkage and privacy management* • RedCap (Vanderbilt University) - research electronic data capture • I2b2 (Harvard University) - translational research data warehouse • TranSmart (J&J) - knowledge management for translational research • PROMIS – Patient reported outcomes measurement info system • The GRHANITE™ technology provides access to data for research in a similar manner to BioGrid. • GRHANITE™ additionally incorporates consent processes, enterprise-wide deployment capabilities and privacy-protecting record linkage technologies. The University owns this tool. The other tools are open source and we are currently establishing contact with their providers and the user community at large.

21. CATS (Clinical and Translational Sciences)

22. TBIG (Translational Bioinformatics Interest Group)

23. Bioinformatics at MMS (current situation) • Bioinformatics expertise and resources are scattered across many institutions (VLSCI, Engineering, Brain Institute, NICTA, VCCC, Hospitals, BSAC, WEHI, Bio21, NecTAR, …) throughout the Parkville Precinct. • In his role as Chair of BSAC, Prof Stephen Harrap has been visiting the Biomedical Science Departments and talking with researchers. • Many are interested in genomic studies including next-gen sequencing.  • Asking about their access to and need for bioinformaticassistance, he discovered that many would value such assistance but weren't sure where to ask. • Others who incorporate bioinformatics were not always aware of the other similar expertise and resources in the School and the University.

24. TBIG (the proposal) • We suggest the name: "Translational Bioinformatics Interest Group" {TBIG}. Translational Bioinformatics is the term used in the US, particularly for the NIH-funded CTSAs and the American Medical Informatics Association (AMIA). • It also clearly conveys the medical focus which we all share.  • Web site to support the activities of this group, including people and resources, a discussion forum and directory. • This TBIG would, at this initial stage, provide a forum where researchers may find and provide assistance and resources in Translational Bioinformatics. • The TBIG could also foster a more active role from our Faculty in engaging with the Bioinformatics organisationsin the Precinct and in Australia such as the Australian Bioinformatics Network or the Bioinformatics arm of EMBL.

25. TBIG – The survey • Survey (draft)