co-care and improvement using clinical...
TRANSCRIPT
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Co-care and Improvement
Using Clinical Registers
Session: C17
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John ØvretveitDirector of Research,
LIME.MMC, Karolinska
Institutet, Stockholm, Sweden
Gene NelsonDartmouth Univeristy
Brent JamesIntermountain Health Care
December 9, 2014These presenters have
nothing to disclose
Objectives
� Cite examples of clinical registers from Sweden and the
USA and explain how they were implemented for value
and co-care
� Detail the benefits to patients and providers of building
or using a clinical database or patient registry and
explain the do's and don'ts in design and implementation
� Take practical steps to make improvements in their
organization and use the tools and guidance provided
regardless of whether their organization is fully
integrated into a health system
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PurposeUse and development of clinical registers for improvement
S1: Intro, examples from Sweden & lessons
S2: Dartmouth registers & practical advice
S3: Intermountain registers & practical advice
S4: Discussion, questions & resources for you
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I spend most time practicing as…�Quality specialist
� Seeing patients (clinician)
�Researcher
� IT specialist
�Manager/leader � Clinic;
� Hospital;
� System;
� Policy (state/federal) 4
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Hands up
� I want basic information/awareness
about what registers can do for me/my
service
�Considering setting up/joining a register
�Already using a register � inputting or getting data from it
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S1: Intro, examples from Sweden &
lessons
Part 1: Relevance to me?
Part 2: Hip register (Gen1)
Part 3: Arthritis register (Gen2)
Part 4: Should I do anything?
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Hands up: “yes, this is a clinical register”
1. One record of all patients with diabetes
attending my clinic
2. My hospital’s record of each patient’s
home address
3. One list of patients readmitted within 30
days over last 6 monthsCR = data for a number of patients, about
diagnosis, treatment, outcomes
…Now electronically-generated and stored7
1) Relevance to me? Researcher:
data to investigate associations between X and Y in Z patientsAccess in already created DB, or call for report, or create DB
RCT & studies on real patients
ClinicianST time-trend data for one patient, comparisons, LT research
ImproversAre changes in clinical outcomes associated with improvements?
ManagersOutcomes for costs: facts for performance- and service-management
Patients – examples >>8
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Any runners?
Bone on bone
Choice
No-re-op.
No infect.
No complix.
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2) Hip register
� 35 years
Data:
� Patient demographics
� Procedure/treatment
�Clinical outcomes
� PROs
www.Shpr.se10
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Re-implants
reduced after
10 years
How the register improved outcomes
By 2012 reduced re-operation rate 10 times
� Converge on 6 implants for 90% procedures
� Two standard operations
� Happened voluntarily
� yearly reports & presentation at annual
conference
Large amount of actionable research
Future – relate to patient genome profileshttp://www.ted.com/talks/stefan_larsson_what_doctors_can_learn_from_each_other?utm_source=email
&source=email&utm_medium=social&utm_campaign=ios-share 12
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Significance - Savingshttp://www.ted.com/talks/stefan_larsson_what_doctors_can_learn_from_each_other?utm_sour
ce=email&source=email&utm_medium=social&utm_campaign=ios-share
For US, could save $2 bln of $24 bln costs for
replacement/repair
Other registers – Treatments, and disease based
� Eg Diabetes Register 95% all departments of
medicine 75% of all PHCs
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3) Arthritis register (Gen2 “smart register”)
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Arthritis co-care supported by clinical data system
Patient enters data http://healthstories.se/
http://www.srq.n.nu/films
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.� Then: Clinical data base presents trends in
treatment and patient-reported disease score
1.50 http://healthstories.se/?p=13 1.51
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Patient Provider
DHT clinical
data baseOther patients
Performance comparisons
Research (genome data base)
Development 1995: paper record mailed to registry administration.
Annual printed reports.
2000: data manually entered into a department computer
data base …& data printed & mailed
2003: patient enters their data at clinic
2005: data sent to registry over the internet
2006: reports demand available provider and patient
2010: data can be extracted from EMR & sent (on
clinicians order)
2015: registry links to patients PHR
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Seven Helpers and HinderancesClinician leaders:
respected researchers and specialty leaders
Government funding & drug adverse reporting
ST Value for clinicians consultations & patient useReports, comparisons, patient health- and computer- literacy
Clinicians need training in ways to involve patient
LT Value for specialty: research > practice (e.g. meds)
Time to input and access (reduced over 20 yrs)
Local IT department (linking, EMR transfer)
Different EMRs and privacy regs19
KI/DTI/RWJ studyQuestions
�Will empowerment given by arthritis
registry system work with all patient
groups?
Challenges adopting model in USA � EMR proprietary – abstract data from EMR for registry?
� Exchange uploaded data (intermediate store for linking)
� Physician uptake – input data time before experience benefits
� De-indentified patient data in separate system – no ownership issues?
� http://217.76.63.11:8080/rareg/20
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“Smart Register 2.0” also for PHCCs using
different Q Registers and reporting software
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Summary – Sweden Q registers � 100 + mostly disease, some procedure, some other
� Varied coverage of physicians and patients
� Funding: Local – time and systems; national - gov
� Evidence of impact and pay back
� Uptake/ investment/ ROI � by a physician, – why spend time and money?
� department/health system
� Technical and privacy issues (to send data and get
something back)
� How each registry organised & governance model
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4) Should I do anything?
�What will a clinical register do for me?
Clinician & Manager:� Gives facts for practice decisions
� May help report quality data increasingly required by payers
Improver: � Tracks impact of changes, evidence of value of change
Research: � faster, lower cost, real patients, new possibilities
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Future – Registries basis for “Learning Health System”
“By the year 2020, 90% clinical decisions will
be supported by accurate, timely, and up-to-
date clinical information, and will reflect the
best available evidence.”IOM Roundtable on Value & Science-Driven Health Care
“a LHS generates and applies the best
evidence for the collaborative health care
choices of each patient and provider; drives the
process of discovery as a natural outgrowth of
patient care”24
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What will I need to do & cost?� Does register you need exist in your service?
� Yes: IT access; learn how to get reports; check using
effectively
� Make register � “Stand-alone” for your purpose – Plan data categories needed;
help to input or feed in data; help to generate analysis/report;
help to interpret
� Types: a) permanent data base; or b) set up system to call for
reports which combine data from different data bases
� Cost: your and others’ time; IT service and support
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What will others need to do & their cost?� IT department
� Priorities (Security, mobile, etc.)
� Ability to understand your needs & co-design
� Technical expertise for system to collect data, provide
analytic reports you need/understandable/visual
� Management
� Believe value worth resources
� Privacy/ethics : IRB? HIPAA
� More: see “resources and tools” 26
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Next 5 years�Your EHR will link to others � & Register systems link- into EHRs:
� to collect data & send items to EHR when open for a
patient (e.g. alerts)
� Registers may help your reporting of required
quality data
� Patients � Aware of services provided by register-enabled
clinics and system – expect you to look up similar
patients & use CDS 27
Pros and Cons of spending time on this
in next 6 months� Beginner
� what is possible with present IT and 2015/6 IT?
� Is value of data worth time and cost (input data validity,
reliability, output timeliness/actionable, attribution)
� Specialist � linking to local & other clinic/systems (NRQN)
� Manager � facts essential to decisions - Quality vs cost LHS
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S4: Discussion, questions & resources
for you
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�Surprises?
�Most useful?
�Might not be true for me/my
service?
�Not mentioned…
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ResourcesSee file:
“ResourcesGuideC17Registers”
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ResourcesGeneral overview of tools, resources and guidance
� *T1Gliklich 2014 AHRQ
Tools for assessing readiness to implement a register
� *T2SurveysReadinessImplementGustafson07: The survey
(*T2a) and how to use it (*T2b).
� Sections from *T2Gustafson 2007 Sections show survey: RIS readiness for
implementation scale (Gustaffson et al 2007) for implementing interactive health communication system (IHCS).
� (Below to be supplied by Brent – reference and document – by
19 nov 2014)
� *T3 OperationalSpecificationOfdataElementsforPatientRegister
Brent James et al intermountain healthcare
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ReferencesØvretveit, J Keel, G 2014 Summary of the Evidence Review of the Swedish
Rheumatoid Registry- Supported Care and Learning Systems, Medical
Management Centre, Karolinska Institutet, Stockholm.
Ovretveit, J Keller, C Hvitfeldt Forsberg, H Essén, A Lindblad, S Brommels,
M 2013 Continuous innovation: the development and use of the Swedish
rheumatology register to improve the quality of arthritis care", International
Journal for Quality in Health Care, 2013; Volume 25, Issue 2, doi:
10.1093/intqhc/mzt002
Øvretveit, J (2014) Evaluating improvement and implementation for health,
McGraw Hill/Open University Press, Milton Keynes, UK. Amazon & Kindle http://www.amazon.com/Evaluating-Improvement-Implementation-Health-Ovretveit-
ebook/dp/B00MUWQABY/ref=sr_1_1?ie=UTF8&qid=1412667198&sr=8-1&keywords=ovretveit+evaluating+improvement
National Quality Registry Network (NQRN®)
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References – Patient use of registries Workman TA. Engaging Patients in Information Sharing
and Data Collection: The Role of Patient-Powered
Registries and Research Networks. AHRQ Community
Forum White Paper. AHRQ Publication No. 13-EHC124-
EF. Rockville, MD: Agency for Healthcare Research and
Quality; September 2013.
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References – Implementing registersBrach C, Lenfestey N, Roussel A, Amoozegar J, Sorensen
A. Will It Work Here? A Decisionmaker’’s Guide to
Adopting Innovations. Prepared by RTI International under
Contract No. 233-02-0090. Agency for Healthcare
Research and Quality (AHRQ) Publication No. 08-0051.
Rockville, MD: AHRQ; September 2008. HRET
Friedman, C Wong, A Blumenthal, D 2010 Achieving a
nationwide learning health system. Sci. Transl. Med. 2,
57cm29 (2010).
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Conclusions
1. Surprises…
2. Useful…
3. Not mentioned…Look this up…