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Core Project Team Members, Roles and Qualifications

Our Core Project Team comprises a group of researchers, healthcare providers, data/technical analysts and trainees. The team is highly interdisciplinary, spanning the domains of medicine, psychology, nursing, nutrition, economics, statistics, epidemiology, informatics and health law. It brings together significant expertise from three CIHR New Emerging Teams (NET) in palliative EOL care, two CIHR strategic training initiative (STI) in health research, a CIHR Partnership in Health System Initiative (PHSI) in timely EOL access, and a CIHR Interdisciplinary Team Grant on drug policy, where a great deal of collaboration has already been established. In addition, our team can provide excellent analytical training/mentorship in EOL care surveillance. We can offer advanced scientific and methodological training in computer-assisted quality improvement, evidence-based decision making and information management/analysis not available elsewhere. While Victoria and Edmonton are the two primary sites where intensive training/mentoring is offered, we plan to create a virtual community of learning using communication technologies and facilitative processes to allow Network team, partners/collaborators to interact in real-time on a regular basis. The team member roles and qualifications are summarized in Exhibit 9 and brief description follows on the next page. Their resumes and references are in the Core Project Team Member Profile document provided in Schedule C - D3 Form.

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Team MemberKey RoleTitle and AffiliationExpertise
Francis Lau PhD Co-lead, overall management Associate Professor, School of Health Information Science, University of Victoria (UVic), BC Health informatics
Michael Downing MD Co-lead, liaison, KT, design info products Research Director, Victoria Hospice Society, BC, Adjunct Professor UVic and UBC Palliative medicine
Mary Lesperance PhD, PStat Statistical methods and algorithms Professor, Dept of Mathematics and Statistics, UVic, BC Medical statistics
Nola Ries MPA, LLM Privacy, data access legislations Adjunct Assistant Professor, Health Information Science, UVic, BC; Research Associate, U of A Health Law Institute Health law and privacy legislations
Barbara McLeod RN, MSN Design/use of info products, KT Clinical Nurse Specialist, Burnaby Hospice Palliative Care Program, Fraser Health Authority; also Adjunct Professor, School of Nursing, UBC Palliative care
Jeff Barnett BSc (Pharm), MSc Design/use of info products, KT Director of Clinical Informatics, BC Cancer Agency, Adjunct Assistant Professor, Health Info Science, UVic Health informatics, pharmacy
Malcolm Maclure SD Patient safety in EOL care, KT BC Patient Safety Chair, Faculty of Medicine, UBC; Adjunct Prof, Health Info Science, UVic; Research Director, Pharmaceutical Services Division, BC Ministry of Health Clinical and health services epidemiology
Vickie Baracos PhD Survival analysis & predictor variables Professor in Palliative Medicine, Dept of Oncology, University of Alberta, AB Nutrition, metabolism
Konrad Fassbender PhD Economic analysis, data access/use, KT Assistant Professor, Dept of Oncology, U of A, AB Health economics
Robin Fainsinger MD Design/use of info products, KT Director, Div of Palliative Medicine at U of A and Capital Health Regional Palliative Care Program Palliative medicine
Cheryl Nekolaichuk PhD Secondary analysis on burden of dying Assistant Professor, Dept of Oncology, U of A, AB; Registered Psychologist, Caritas Health Health psychology (psycho-oncology), palliative care
Craig Kuziemsky PhD Ottawa dataset access/use Assistant Professor, School of Management, University of Ottawa, Ontario Health informatics
Ju Yang BSc Senior data analyst Research analyst, Health Information Science, UVic, BC Health informatics, data analysis, statistics
Dennis Lee MSc Junior data/technical analyst Research analyst, Health Information Science, UVic, BC Health informatics, e-learning, website design
Heather Jennings BSc Junior data analyst Research analyst, Health Information Science, UVic, BC Health informatics, data analysis, statistics
Jin Huang BSc Junior data analyst Analyst, CIHI - Western Office Health Data Analyst, Statistics, Health Information
New-hires Data analysts Part-time analysts to be hired by Network partners Data query/extraction
New-hires Technical analysts Part-time analysts to be hired by Network partners Data extraction routine design/development

Exhibit 9. A list of the Core Project Team members with their roles and qualifications.

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Francis Lau PhD

Francis is a co-principal applicant responsible for the creation, coordination and operation of the Network. Francis' current research is in palliative care informatics, where he examines the use of information systems by clinicians/managers in EOL decision making. He has experience managing large-scale multi-institutional initiatives, programs and teams. During 2002-07 Francis was the PI of a CIHR Strategic Training Program grant in health informatics. Francis is now co-PI of a CIHR New Emerging Team grant on overcoming communication barriers in EOL transitions and the PHSI study to enhance timely EOL access, and co-chair of the Canadian Strategy for Cancer Control BC/Yukon (CSCC BC/Y) Hospice Palliative End-of-life (HPEOL) Common Data Set Working Group to develop common HPEOL data standards.

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Michael Downing MD

Michael is a co-principal applicant responsible for co-leading the Network in the design of information products, KT and coordination with partners/collaborators. Michael is the co-PI of our CIHR-NET and PHSI initiatives for Vancouver Island and co-chair of the CSCC BC/Yukon HPEOL Common Data Set Working Group. He is a practicing palliative medicine physician and Research Director at Victoria Hospice with 25+ years experience in clinical and secondary use of health information, including health system performance analysis/reporting.

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Mary Lesperance PhD, PStat

Mary is a co-applicant responsible for statistical methods and analytic algorithm design for the team. Mary is Founding Director of the Statistical Consulting Centre at UVic that offers statistical advice and services to researchers at the university and beyond. Mary is a member of the research team in our CIHR-NET and PHSI initiatives providing expert guidance on statistical data analysis/interpretation. She has been instrumental in leading our EOL survival analysis and survival nomogram design.

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Nola Ries MPA, LLM

Nola is a co-applicant responsible for legislative and legal issues in patient data access for the Network. Nola teaches and conducts research in health care law, public health law and privacy law, with a focus on privacy issues in health research and informatics. She has expertise in Canadian privacy laws and policies, has written major research reports and educational modules on health information and surveillance for national health organizations. She serves on research ethics boards and has assisted organizations in privacy impact assessments.

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Barbara McLeod MSN

Barbara is a co-applicant responsible for assisting in the design /use of the information products and KT. Barbara is a Registered Nurse with a wealth of knowledge, clinical experiences and expertise in hospice palliative care including Hospice Palliative Care Accreditation processes. Barbara is an original member of CSCC BC/Yukon HPEOL Common Data Set Working Group and is co-investigator in the CIHR funded research study entitled, Access to Care at the End of Life: Encounters between Home Care Nurses and Family Caregivers. (2008).

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Jeff Barnett BSc (Pharm), MSc

Jeff is a co-applicant responsible for access/use of the BC Cancer Agency (BCCA) datasets, assisting in design/use of information products and KT. Jeff has extensive experience as information analyst and database administrator. In his previous role as a pharmacy information analyst he has worked on projects involving the implementation and ongoing maintenance of pharmacy and health care databases related to cancer care and treatment.

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Malcolm Maclure SD

Malcolm is a co-applicant responsible for KT and the design of information products with focus on patient safety in EOL care. Malcolm is a health services epidemiologist specialized in methodology, with expertise in pharmaceutical policy research and KT studies. He is PI of a CIHR Interdisciplinary Team Grant in drug policy related to forecasting, financing, governance, public values and evidence.

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Vickie Baracos PhD

Vickie is a co-applicant responsible for access/use of datasets from the Alberta Capital Health Palliative Care Program. Vickie's research is in understanding/managing cancer cachexia-associated malnutrition and weight loss. She is PI of a CIHR-NET on cancer-associated malnutrition and wasting, and co-investigator in a CIHR-STI in translational cancer research. Vickie is currently studying survival prediction based on nutritional features of cancer patients and blood work.

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Konrad Fassbender PhD

Konrad is a co-applicant responsible for the economic analysis methods, facilitating dataset access/use in Alberta and KT. Konrad is a health economics/services researcher with expertise in health services utilization and performance reviews especially in HPEOL care. He has published extensively in scientific journals and commissioned studies, for example studies into the effects of health reform and technological change on health/economic outcomes of dying patients and their families. Konrad has developed tools to measure the cost and performance associated with financing and delivery of health/social services.

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Robin Fainsinger MD

Robin is a co-applicant responsible for design/use of the information products and KT for the Network. Robin is a co-investigator of a CIHR-NET on cancer pain management. He has conducted numerous studies into the design/use of clinical assessment tools in palliative care. Robin's present research focus is on developing a TNM Staging System for cancer pain.

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Cheryl Nekolaichuk PhD

Cheryl is a co-applicant responsible for secondary analysis especially in burden of disease/dying from psycho-social and needs aspects. Cheryl is a registered Psychologist with expertise in psychosocial oncology and palliative care. Her clinical/research interests are in biopsychosocial aspects of life-threatening illness, including psychosocial aspects of pain and suffering; experience of hope at end of life; symptom assessment in palliative EOL care; and measurement and evaluation in vulnerable populations.

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Craig Kuziemsky PhD

Craig is a co-applicant responsible for liaising with our Ottawa partner on dataset access/use and KT with an emphasis on policy/practice impact. Since 2006, Craig has been involved in developing a research program for palliative care informatics to enhance the design and development of information systems to support palliative practice/program development. This work has taken place at local, provincial and national levels. He has also made a methodological contribution to the design, implementation and evaluation of information systems through combining participatory design and grounded-theory methodologies. These have been applied to domain and task ontology development and the application of such ontologies to information system design.

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Ju Yang BSc, MSc (Medicine)

Ju is the data analyst responsible for coordinating the extraction, consolidation, and analysis/reporting of datasets for the Network. Ju is a physician trained in China with a Masters degree in Medicine from Tongji Medical University in China, and a BSc in Health Informatics from UVic. She has worked as a research assistant in different database related projects at the School. Ju is currently the data analyst for our CIHR-NET and PHSI initiatives responsible for all statistical data analysis/reporting using multiple anonymized EOL datasets.

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Dennis Lee MSc

Dennis is the technical analyst responsible for designing the Web-based technology platform for our Network, and a junior data analyst to learn EOL cancer surveillance methods. Dennis recently graduated from UVic with a MSc in health informatics. He is currently engaged in research relating to clinical terminologies and data standards such as SNOMED CT, ICD and HL7 in palliative care. He also has a background in web application development and worked as the Asia Pacific Web Developer in DuPont, Singapore prior to coming to Canada.

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Heather Jennings BSc

Heather is the project coordinator and junior data analyst responsible for extraction/use of the HPEOL datasets and learning of EOL cancer surveillance methods. Heather has a BSc in Mathematics and is now completing her MSc in Health Informatics degree at UVic. She has worked as a co-op student in different healthcare organizations and departments e.g. Performance Monitoring and Improvement, and IM/IT at Vancouver Island Health Authority, and Clinical Informatics at BC Cancer Agency.

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Jin

Jin is the junior data analyst responsible for analysis of the BC Cancer Agency dataset. Ju has two BSc degrees, one in Computer Science and another in Health Information Science. She is currently completing her MSc in Health Information Science at Uvic. She has extensive experience with a variety of Canadian Institute for Health Information health databases including DAD, NACRS, National Trauma Registry as well as other databases such as Vital Statistics. She was one of the primary analysts for CIHI Western jurisdictions EOL study and has also contributed to producing other CIHI reports such as Alternative Level of Care in Canada, Hospitalizations, Early Revisions and Infections Following Joint Replacement Surgery.

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