Canadian and Provincial Deceased Donation Data Update

Canadian and Provincial Deceased Donation Data Update

Disclosures Chair of Deceased Donation Data Working Group (D3WG) Canadian Blood Services

Deceased Donation Why Data? Describe and explain variation Understand trends Performance measurement and comparisons Evaluate policy decisions Address supply-demand mismatch

Deceased Donation Why Data? 5000 4000 3000 2000 1000 0 Canadian organ donation Supply vs. demand 2005-2014 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 Donors Persons transplanted Persons on waitlist 4

1:134 Canadian Death Ratio Deceased Donation in Canada 35,848,600 Canadian Population 5

651 Utilized Donors Deceased Donation in Canada - 2015 5,236 Potential Donors* ~150,000 Hospital Deaths ~267,000 Deaths * CORR estats 2014 6

High Performing Donation Systems 651 Utilized Donors Deceased Donation in Canada - 2015 5,236 Potential Donors ~150,000 Hospital Deaths ~267,000 Deaths 175 279 651 Donors 444 1,037 1,996 Transplants Performed 4,631 362 262 Withdrawals Waiting Deaths 77 13 16 7

Spain Croatia Belgium Portugal Malta* USA France Slovenia Czech Austria Finland Norway Italy UK Belarus Latvia Poland Australia Canada Hungary Ireland Switzerl Slovak Sweden Netherla Denmark Brazil Argentina Uruguay New Germany Iran South Israel Chile Turkey Bulgaria Hong Kong Romania Luxembu Russia Saudi Trinidad China Japan Georgia 45.0 40.0 39.7 International Deceased Donation Rates 2015 (PMP per million population) 22.0 Call to action 35.0 30.0 28.5 25.0 20.0 15.0 10.0 5.0 20.2 18.3 18.2 0.0 Source: International Data: http://www.irodat.org/img/database/pdf/newsletter2016_firstedition.pdf Canadian Data: 2016 Canadian Blood Services survey of Canadian transplant centres and organ donation organizations 8

DECEASED DONATION DATA WORKING GROUP (D3WG) Organized by CBS Tasked with making recommendations for a Minimum Data Set using standard definitions Coordinates activities with other transplant data working groups

Canadian Data Capabilities

Canadian Challenges Deceased Donation Data Canadian Challenges Deceased Donation Data Multiple, incomplete data sources Different data definitions and datasets Different triggers (potential donors) Lack of data prior to consent Lack of timely reporting Difficulty comparing regions/ provinces Lack of performance data in relation to implementation of leading practices

POPULATION - 34,754,312 DEATHS 243,643 HOSPITAL DEATHS 117,156 National, aggregate, data Individual data VENTILATED DEATHS - 4,790* BRAIN-INJURED VENTILATED DEATHS POTENTIAL DONORS (PD) 3,711 REFERRED PD 3,000 ELIGIBLE DONORS (ED) - 728 APPROACHED ED CONSENTED DONORS ACTUAL DONORS data based on local standards data based on national standards 542 DRAFT DATA FOR 2012

D3WG Recommendations Minimum dataset for organ donation Use existing data sources (e.g. CIHI DAD) to provide common estimates of donation potential Improvements to CIHI coding Initiative to harmonize referral triggers Common definitions and similar data collection from potential donors

Deceased Donation in Canada

Deceased Donation in Canada Deceased donors in Canada by type, 2006-2016 800 700 600 500 400 300 200 64% Increase in total deceased donors (2006-2016) 100 0 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 DCD 4 22 42 43 46 67 86 66 123 138 173 NDD 457 465 438 444 421 446 456 488 472 513 585 Total 461 487 480 487 467 513 542 554 595 651 758 % DCD 1% 5% 9% 9% 10% 13% 16% 12% 21% 21% 23% 2016 results reported are preliminary and may be subject to change pending validation.

Deceased Donation in Canada Deceased donors in Canada per million population by type, 2006-2016 25.0 20.0 15.0 10.0 5.0 0.0 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 DCD 0.1 0.7 1.3 1.3 1.4 2.0 2.5 2.5 3.5 3.8 4.8 NDD 14.0 14.0 13.1 13.1 12.3 12.9 13.0 13.0 13.2 14.3 16.2 Total 14.1 14.7 14.4 14.4 13.7 14.9 15.5 15.5 16.7 18.2 21.0 % DCD 1% 5% 9% 9% 10% 13% 16% 12% 21% 21% 23% 49% Increase in total deceased donor rate (2006-2016) 2016 results reported are preliminary and may be subject to change pending validation

Deceased Donation in Canada Deceased organ donation rates PMP by province over time, 2006-2016 30.0 25.0 20.0 15.0 10.0 5.0 0.0 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 35% 33% 66% 122% 28% 35% 38% 9% -42% 11% 21.0 Canada B.C.* Alta.** Sask. Man. Ont. Que. N.B. N.L. N.S.*** 22.0 Call to Action Target 21.0 Current Rate as of 2016 *Rates for BC - population of Yukon is included **Rates for Alberta - populations of NWT & Nunavut are included. ***Rates for NS population of PEI is included. 2016 results reported are preliminary and may be subject to change pending validation

Deceased Donation in Canada DCD donors per million population by province and year, 2006 2016 9.0 8.0 7.0 6.0 5.0 4.0 3.0 2.0 1.0 0.0 B.C.* Alta.** Sask. Man. Ont. Que. N.B. N.S.*** N.L. 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 *Rates for BC - population of Yukon is included **Rates for Alberta - populations of NWT & Nunavut are included. ***Rates for NS population of PEI is included. 2016 results reported are preliminary and may be subject to change pending validation

Deceased Donation in Canada DCD donors per million population by province and year, 2006-2016 10.0 8.0 6.0 4.0 2.0 0.0 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 B.C.* Alta.** Sask. Man. Ont. Que. N.S. *Rates for BC - population of Yukon is included; **Rates for Alberta - populations of NWT & Nunavut are included 2016 results reported are preliminary and may be subject to change pending validation

Transplantation

Deceased Donation in Canada Organs transplanted by deceased donor type, 2006-2016 2500 2000 1500 1000 500 46% Increase in deceased donor transplants (2006-2016) 0 2006 2007 2008 2009 2010 2011 2012* 2013 2014 2015 2016 DCD 10 59 88 100 106 152 164 149 290 312 381 NDD 1596 1580 1453 1522 1498 1518 1230 1688 1584 1701 1967 Total 1606 1639 1541 1622 1604 1670 1394 1837 1874 2013 2348 * Missing Quebec data 2016 results reported are preliminary and may be subject to change pending validation

Deceased Donation in Canada Patients on Transplant Waitlist by Province, 2006-2016 2000 1800 1600 1400 1200 1000 800 600 400 200 0 BC AB SK MB ON QC ATL 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 B.C. Results include Yukon Alberta results include Nunavut and the Northwest Territories 2016 results reported are preliminary and may be subject to change pending validation

Deceased Donation in Canada Effect of DCD on organ transplants

Deceased Donation in Canada Effect of DCD on organ transplants

Deceased Donation in Canada Effect of DCD on organ transplants

Deceased Donation in Canada Effect of DCD on organ transplants

Deceased Donation in Canada Effect of DCD on organ transplants

Deceased Donation in Canada Time from admission to death NDD DCD Median 2.7d Median 6.0d

Provincial Practices

Deceased Donation in Canada Factors Contributing to Higher Donation Rates B.C ALTA. SASK. MAN. ONT. QUE. N.B. N.L. N.S. Mandatory referral * Donation physicians NDD leading practices DCD programs % DCD donors, 2015 25 13 10 0 31 11 0 0 15 Leading practices in donor management Deceased donors, 2016 (DPMP) 20.4** 16.3*** 12.3 12.2 25.3 20.5 17.2 13.2 18.3 Number of deceased donors, 2016 97 70 14 16 351 170 13 7 20 2012 2016 % change in DPMP 33 66 122 28 35 38 9-42 11 Implementation complete or near completion as of 2015 Implementation in progress as of 2015 * Mandatory consideration ** The population of Yukon is included in the calculation of this rate. *** The populations of Nunavut and the Northwest Territories are included in the calculation of this rate. The population of PEI is included in the calculation of this rate. Implementation not started as of 2015 2016 results reported are preliminary and may be subject to change pending validation

International Comparisons

Deceased Donation in Canada International deceased donation rates, 2006 2015 (DPMP) 50 45 40 35 30 25 20 15 10 5 0 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 28% 23% 53% 66% 112% Spain United States Canada United Kingdom Australia Increase in deceased donor rate, 2006-2016 2016 international rates based on IRODaT Preliminary Numbers, 2016 (published August 2017), with the exception of the United States rate, which is bases on SRTR reported count (consistent with UNOS publications) and population estimate from US Census Bureau. 2016 results reported are preliminary and may be subject to change pending validation

Deceased Donation in Canada Deceased Donation: Summary National rate of deceased donation up 49% since 2006 Up 35% since 2012 Major driver in recent years DCD Improvements appear to be correlated with implementation of common leading practices Greatest improvements seen in provinces with multiple system changes Canada s rate now among top 20 in world Rsults reported are preliminary and may be subject to change pending validation