Building Interdisciplinary Research Capacity in End of Life Care

A Canadian Example

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

Burge F, Johnston G, Lawson B, Asada Y, Rocker G, McIntyre P

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

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” (2006-2011)

Halifax Nova Scotia, Canada

Where We Are

NELS ICE Question

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

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

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

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

NELS ICE Trainees

New Investigators

Yukiko Asada - New Investigator, ’05-’08 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, ‘06-’07 knowledge translation literature review for ICE Rebecca Earle - PhD candidate Robin Urquhart - NET Coordinator, PhD candidate, ‘07-’09 ICE knowledge exchange

Clinical/Admin.

Christine Beck - Family Medicine Resident, ’08-’09 ICE Project 6 qualitative, nursing home Nicole McQuinn - ICE Research Coordinator, BA graduate, ‘09-’11 management/KE trainee Dorianne Rheaume - Radiation Oncologist, ‘08 sabbatical, equity in palliative radiotherapy Elsie Rolls - CHSRF EXTRA Fellow, ‘08-’10 ICE Project 6 nursing home intervention Joanne Young - Respiratory Therapist, ’07-’10 ICE develop/manage ICE Project 7 home COPD

NELS ICE Trainees cont’d

Masters & Recent Grads

Jennifer Barnes - MN candidate, ’08-’09 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 ’07-’08 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; ’08-09 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

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

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

Accomplishments

•  10 core co-investigators •  30+ collaborators •  26 trainees •  50+ publications •  Surveillance Report - 2008 •  100+ 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

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

Questions?