Building Interdisciplinary Research Capacity in End of Life Care
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1 Building Interdisciplinary Research Capacity in End of Life Care A Canadian Example Burge F, Johnston G, Lawson B, Asada Y, Rocker G, McIntyre P Fred Burge, MD FCFP MSc Co-Principal Investigator, NELS ICE Dalhousie University Halifax, Nova Scotia, Canada 38th Annual Scientific Meeting of the Society for Academic Primary Care July 7 10, 2009
2 Outline Introduction to Network for End of Life Studies (NELS) Interdisciplinary Capacity Enhancement (ICE) Purpose and Local Context Interdisciplinary Nature of Collaboration Accomplishments Work Remaining
3 Network for End of Life Studies (NELS) Long term (10+ years) series of projects by Halifax based researchers to investigate end of life care Interdisciplinary Capacity Enhancement (ICE) Canadian Institutes for Health Research (CIHR) grant: Reducing Health Disparities and Promoting Equity for Vulnerable Populations ( )
4 Where We Are Halifax Nova Scotia, Canada
5 NELS ICE Question
6 Goals of NELS ICE 1. Create an interdisciplinary team of researchers, trainees, health professionals, and community partners 2. Develop surveillance system to identify vulnerable populations at end of life that include cancer and other chronic diseases: COPD, CHF, diabetes, renal disease, etc. 3. Design and conduct pilot studies 4. Engage in knowledge translation
7 Who we are Group of Researchers from: Faculties of Medicine and Health Professions Dalhousie University Capital District Health Authority IWK Health Centre for Women and Children Cancer Care Nova Scotia Collaborators Canadian and Nova Scotia Hospice Palliative Care Associations (CHPCA, NSHPCA) Ann McKim ( 08 - ), Gael Page ( 05-08) Health Canada Julie Lachance Institute for Clinical Evaluative Sciences Craig Earle University of Wisconsin-Madison Dan Hausman Health Association of African Canadians Diversity & Social Inclusion Health Policy Advisor Sharon Davis-Murdoch Nova Scotia Department of Health
8 NELS ICE Research Investigators Grace Johnston, PhD, Principal Investigator Fred Burge, MD FCFP MSc, Co-PI Yukiko Asada, PhD Trevor Dummer, PhD Gerri Frager, MD FRCPC Eva Grunfield, MD FCFP DPhil Beverley Lawson, MSc Victor Maddalena, BN MHSA PhD Paul McIntyre, MD FCFP Graeme Rocker, DM FRCP FRCPC MHSc
9 Strengths Our disciplinary strengths include: Ethics Epidemiology Clinical care palliative medicine family medicine oncology respirology pharmacy nursing Epidemiology Ethics and Culture End of Life Clinical Care
10 NELS ICE Trainees New Investigators Yukiko Asada - New Investigator, learn research team development/management Monique Lanoix - PhD graduate, 08 develop ICE literature data base; now tenure track Asst Prof Yoko Yoshida - PhD candidate and new graduate, 08-10, develop equity measurement Post Doctoral Fellows Judith Fisher - Post Doctoral Fellow, 09-10, in 08 PhD student in Pharmacy at U of Toronto Victor Maddalena - Post Doctoral Fellow 06-07, in 08 tenure track Assistant Professor at MUN PhD Students Dorothy Barnard - PhD candidate, knowledge translation literature review for ICE Rebecca Earle - PhD candidate Robin Urquhart - NET Coordinator, PhD candidate, ICE knowledge exchange Clinical/Admin. Christine Beck - Family Medicine Resident, ICE Project 6 qualitative, nursing home Nicole McQuinn - ICE Research Coordinator, BA graduate, management/ke trainee Dorianne Rheaume - Radiation Oncologist, 08 sabbatical, equity in palliative radiotherapy Elsie Rolls - CHSRF EXTRA Fellow, ICE Project 6 nursing home intervention Joanne Young - Respiratory Therapist, ICE develop/manage ICE Project 7 home COPD
11 NELS ICE Trainees cont d Masters & Recent Grads Jennifer Barnes - MN candidate, ICE Project 3 on end of life care in pediatric ICU Jessica Dooley - Community Health and Epidemiology (CHE) MSc candidate in 07 ICE Project 3 Jun Gao - Statistical Analyst, '06-11, develop NELS ICE surveillance, reporting, measures Jenn Gillis - MHA candidate 09 Farhana Kant - MHSA candidate ICE Project 4 Immigrants; now Policy Analyst, NS DOH Junaid Kapra - MHI (Health Informatics) new graduate 06, palliative program data review Ruth Lavergne - CHE MSc candidate, 07 ICE Project 2; develop Surveillance measures Andre Madison - CHE MSc Candidate, 09 Equity measures for ICE Project 2 Suha Masalmeh - MHSA candidate 08 ICE Project 8 Review of Family Caregiver Policy Shauna McVorran - MHSA new graduate 07, develop Surveillance report Patricia Murray - MHSA candidate 08 ICE Project 3 Documentation of End of Life Pediatric care Sarbjeet Singh - MHA candidate 09 Alison Zwaagstra - MHI new graduate 07, develop Vulnerable Population Surveillance system
12 NELS ICE Project Streams 1. Surveillance of Inequity in Quality End of Life Care. 2. Vulnerable Populations at End of Life: An Ethical Analysis 3. End of Life Care for Children and Youth 4. Palliative Care for African Nova Scotians and Other Populations: Deaf, SE Asian Immigrants, Aboriginal 5. Mortality Follow-Back Study from Death Certificates 6. Elderly in Nursing Homes 7. Community Care for COPD 8. Policies to Support Family Caregivers 9. Medication Use at End of Life
13 Methods Our methods encompass: data base development identification of population disparities in service access equity metrics statistical analyses qualitative methods to inform dialogue on justice for marginalized groups and to understand caregiving in various settings quality care indicators supportive interventions at end of life interdisciplinary education knowledge exchange
14 Accomplishments 10 core co-investigators 30+ collaborators 26 trainees 50+ publications Surveillance Report presentations 8 Visiting Scholars Work in Progress Sessions Networking events Interprofessional Learning Session NELS News NELS ICE Website: nels.dal.ca Suha Masalmeh presents End of Life Caregiving: Literature Review and Framework for Action
15 Remaining Work 2011 Surveillance Report New Grants More new investigators Further study on vulnerable populations Further Knowledge Exchange NELS ICE Website Newsletters Work in Progress Sessions Planning 2010 Closing Conference
16 Questions?
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