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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

1

5

.� Then: Clinical data base presents trends in

treatment and patient-reported disease score

1.50 http://healthstories.se/?p=13 1.51

1

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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…