Measuring the Effectiveness of State Donor Registries

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Measuring the Effectivenessof State Donor
Registries
Presented by DDC Faculty March 29, 2007
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• Collaborative teams organized by states
• Team objective Found, Fix or Fill state donor
  registry
• National goal 100 million donor designations by
  April 2008

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Impact of Registries

• Individuals and Families
• Donors assured their wishes will be honored
• Families comforted by certainty of donors choice
• Donation Process
• Family approach and recovery happen sooner
• More organs viable for transplant
• Hospital bills lower due to less OR time
• Beds cleared for incoming patients

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An Effective State Donor Registry

• accepts signups via DMV and online
• captures Yes only
• is legally binding consent for organ, tissue and
  eye donation
• optimally includes consent for research
• attracts a significant percentage of potential
  designated donors
• is searched on every single donor case

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State Donor Registries Design
44 total registries
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State Donor Registries Data

• Among 33 states reporting data
• 51,445,154 actionable donor designations (ADD)
  (as of 12/31/06)
• 162,285,597 licensed drivers (as of 10/1/05)
• ADD share 32

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Data Reporting Challenges

• Access
• Data not easily accessed when housed by state
  government, DMV, or third-party provider
• Data not available on quarterly basis
• Accuracy
• Duplicate registrations
• Deceased persons not removed from databases
• Nationwide licensed driver data from 10/05
• Some registrants lt 16 years old
• Much data self-reported

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Q1 How far have registries penetrated?

• What share of licensed drivers are designated
  donors?

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Key Terms
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ADD Share, 2006
as of 12/31/06
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ADD Share, 2006
as of 12/31/06
12
ADD Share, 2006
as of 12/31/06
13
ADD Share, 2006
as of 12/31/06
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ADD Share by State, 2006
50
20-49
lt20
Mean 42
32 Cume
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Q2 Are people signing up?

• At what rate are licensed drivers designating
  themselves as donors?

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Key Terms

• If a state issues 100,000 drivers licenses in a
  month, and 50,000 of these carry a donor
  designation, the designation rate is 50.

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Designation Rate, 4Q 2006
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Designation Rate, 4Q 2006
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Designation Rate, 4Q 2006
50
30-49
lt30
Mean 45
38 Cume
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Q3 How effective are registries?

• What percentage of donor cases are authorized or
  facilitated by donor designation?

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Key Terms
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DOD Rate, 2006
23
DOD Rate, 2006
24
DOD Rate, 2006
25
DOD Rate, 2006
40
20-39
lt20
Mean 29
Cume 20
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Key Terms
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DTD Rate, 2006
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DTD Rate, 2006
29
DTD Rate, 2006
30
DTD Rate, 2006
31
DTD Rate, 2006
40
20-39
lt20
Mean 25
23 Cume
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Key Terms
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DED Rate, 2006
34
DED Rate, 2006
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DED Rate, 2006
40
20-39
lt20
Cume 24
21 Mean
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Q4 How else is the process eased?

• What percentage of organ donor cases are
  initiated by families?

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Key Terms
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FOD Rate, 2006
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DOD Rate FOD Rate, 2006
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Q5 Are we maximizing our registries?

• Can we expect the share of registry-authorized
  donor cases to equal the overall share of
  designated donors?
• If 50 of a states licensed drivers are
  designated donors, can we expect 50 of donation
  cases to be authorized via donor designation?

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Ratio DOD Rate to ADD Share, 2006
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Ratio DOD Rate to ADD Share, 2006
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Ratio DOD Rate to ADD Share, 2006
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Ratio DOD Rate to ADD Share, 2006
0.70
0.50-0.69
lt0.50
Mean 0.59
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Ratio DTD Rate to ADD Share, 2006
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Ratio DTD Rate to ADD Share, 2006
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Ratio DTD Rate to ADD Share, 2006
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Ratio DTD Rate to ADD Share, 2006
0.70
0.50-0.69
lt0.50
Mean 0.61
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Low Rate-to-Share Ratios Why?

• Underreporting or unavailability of tissue donor
  data due to market competitiveness
• Donor designation not searched in all cases
• Those most likely to become donors register at a
  lower rate than population at large
• Registry is in early evolutionary stage overall
  numbers still building

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Summary

• State donor registries play an essential role
• A majority of cases can be authorized before a
  family is approached
• Registries must be founded, fixed and filled
• Recovery agencies must search for donors on
  every case
• Access to reporting data must be improved