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Swedish Intensive Care Registry – “the first 15 years” SICSAG 2015 Sept 4 Ritva Kiiski Berggren, M.D., Ph.D. Swedish Intensive Care Registry Senior consultant Dep’t of Intensive Care and Postoperative Services Umeå University Hospital

Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

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Page 1: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Swedish Intensive Care Registry –

“the first 15 years”

SICSAG 2015 Sept 4

Ritva Kiiski Berggren, M.D., Ph.D.

Swedish Intensive Care Registry

Senior consultant

Dep’t of Intensive Care and Postoperative Services

Umeå University Hospital

Page 2: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Swedish Intensive Care Registry

78 of 84 ICU’s register

66 general

5 thx

4 ped

3 neu

2 burn

1 ECMO

40.090 episodes (95%)

2013

No HDU’s2016-02-22 Svenska Intensivvårdsregistret 2

Page 3: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Swedish Intensive Care Registry

– Founded 2001

– Patient information base @ Värmland Health Care Region

– Board of Directors (M.D., R.N.)

– CEO: Carl-Johan Wickerts (intensivist)*

– Director of Board: Christina Agvald-Öhman (intensivist)

– Värmland representative: Göran Karlström (intensivist)*

* = founder

Page 4: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

15-year-old registry

Mature, well validated

Web-based submission

Satisfied?

Gold mine for research!

Tool for head of the department

– manpower

Does someone else care?

2016-02-22 Svenska Intensivvårdsregistret 4

Page 5: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Registry data - research

Page 6: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Swedish Intensive Care Registry

Annual Report on our websitewww.icuregswe.org

Open Comparison

National summary of all quality registries

Page 7: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Finding the “hot topic”

2016-02-22 Svenska Intensivvårdsregistret 7

Discharge to another ICU because of resource scarcity

Annual report 2013 – media storm!

Page 8: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Open access – for everyone

2016-02-22 Svenska Intensivvårdsregistret 8

Page 9: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

National focus

Swedish Assoc. of Local Authorities and regions: all public service on local level

Öppna Jämförelser (Open Comparisons)

Quality indicators to visualise and rank caregivers

All aspects of health care

Page 10: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

SKL

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Page 11: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Open comparisons

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Page 12: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

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Risk-adjusted mortality 30 d after

admission (open comparison)

Page 13: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Dilemma – high quality data -

underutilised

Clinical directors need data

Internal audit

Quality improvement

Comparison w/ others

How can your quality registry help?

Funding 2015: 212 Mkr = 16,5 M pounds

2016: cuts to 108 Mkr - ranking

Page 14: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

SKL initiative

Situation recognised by authorities

Agreement w/ government -> project

Regional quality centers (6)

Support registries in increasing validity, educatingmembers in using out-data

Aim: develop Qreg to become a tool for improvinghealth care processes, follow up and research

Page 15: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Quality Registry Center

6 centers in Sweden: support registries

– Technical

– Statistics

– Collaboration w/ other registries

– Education:

coaching

teamwork

quality improvement

leadership

Page 16: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Quality registries

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Page 17: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

QR Project 2012-16

Focus: eliminate double registering and make out-data more user-friendly

Certifying = level 3-1, with increasing demands on quality

K = registry candidate; “newcomers”

89 registries, 18 candidates funded 2015

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Page 18: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Certifying – level 1

Guidelines

Open Comparison – data

Coverage

Patient information @ website

Research and publications

Member satisfaction – enquiry

Expert review

Validated data2016-02-22 Svenska Intensivvårdsregistret 18

Page 19: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

QRC Stockholm

SIR one of 13 registries

Several members educated, started quality improvement projects

Collaboration w/ Dartmouth Institute Microsystems Academy

Leaders, co-workers and patients together

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Page 20: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

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Page 21: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

SIR experience

4 ICU’s educated by QRC Sthlm

Project topics:

– Reduce invasive ventilation

– Decrease SMR

– Analyze deceased who received treatment restrictions during ICU stay

– Etc.

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Page 22: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

“This is the way to work with quality registry data” (Christina Agvald Öhman, SIR)

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Page 23: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Patient representative

Involving patients and next-of-kin

– Required by health department

Patient’s experience and input

SIR is currently establishing

QRC offers education for pt repr.

2016-02-22 Svenska Intensivvårdsregistret 23

Page 24: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

ICU Follow-up

A separate data collection; web based

Reported in annual report and separate patient/family version

> 16 yrs, > 96 hrs

SF-36 scale

2-6-12 mo after

– Outpatient or questionnaire

2 R.N. work part-time w/ follow-up at SIR

– Lotti Orvelius, Eva Åkerman2016-02-22 Svenska Intensivvårdsregistret 24

Page 25: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

ICU Follow-up

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Early contact (5-10 d) with pt. on ward Outpatient visit 2 mo after discharge (family member

or friend accompanies) SF-36 and other data is registred Re-visit 6 och 12 months post-discharge******************************************** Photo diary Other issues: PTSD, memories, sleep Visit the ICU Meet PT, social worker, other staff, if desired

Page 26: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Research network seminar

New forum for critical care researchers to “mingle”

Nov. 2015 at Swedish Intensive Care Society annual meeting

Aim:

– catalyze new constellations

– promote registry data usage for medical student and resident (trainee) quality projects

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Page 27: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Registry Annual Meeting

Member input for development:

– i.e. web-based learning tool for correct diagnosing

Teaching sessions

Working groups: pedi, neuro

2-way channel: members’ voice

– “Mentometer”

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Page 28: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Other ways of support and communication

Site visits: hands-on problem solving and brainstorming

“Hot-line” personal guidance

On-line support – FAQ

– Visible for all

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Page 29: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

Summary

The Swedish Intensive Care Registry is aiming to move from good quality data to become

More open

More exciting

More including

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Page 30: Swedish Intensive Care Registry “the first 15 years” · New forum for critical care researchers to “mingle” Nov. 2015 at Swedish Intensive Care Society annual meeting Aim:

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Thank you!