From Codman to Collaboratories:
A CF Care Model That’s Fit for the Future
Eugene C. Nelson, DSc, MPH
Professor, The Dartmouth Institute
October 11, 2014
28th Annual
North American Cystic Fibrosis Conference
Atlanta, Georgia
Many thanks to P. Batalden, S. Lindblad, P. Margolis, K. & J. Sabadosa
and B. Marshall for special assistance on this project.
Flow
1. Colleen & Sonia
2. Evolution of Registries
3. New CF Care Model
4. Just 3 Ways to Deliver Value
5. The Opportunity for CF
Colleen
1968
Part 1
Sonia
2002
Living
Longer!
Celebrate!
Moon
Shot
Challenge
Imagine …
Children born with CF ‒ in Atlanta or
Peoria or Tallahassee or Seattle or
Winnipeg – expecting to live just as
long as anyone else.
From Codman to Collaboratories
Part 2
Registry Hall of Fame
Codman
O’Conner
Lindblad
Margolis
Registry Hall of Fame
Codman
O’Conner
Lindblad
Margolis
Codman: End Results System
“What is the end results idea?
It is that every hospital should trace
each patient with the object of
ascertaining whether maximum
benefit has been obtained and to
find out if not, why not. The end
results idea merely demands that
the results shall be constantly
analyzed and possible methods of
improvement constantly
considered.”
E. A. Codman. The Shoulder, 1934.
1910
Golden
Eggs
Back Bay
Goose
Trustees:
Clinical
Truth
“If we let her know the truth about our patients …
do you suppose she would still be willing to lay?”
O’Conner: NNE & CFF
1,000s of lives
saved in
northern
New England
&
people with CF
living longer
1988
Lindblad: Swedish Rheumatology
Quality Registry
RA remission
rates improving
across all of
Sweden
Feed Forward
Innovation
1996
Patient doing joint count and
entering data on computer
Swedish
Rheumatology
Quality
Registry
Summary
Overview of a
Rheumatology
Patient
January - March
Case in point:
Swedish National
Quality Registry …
This patient is
doing better …
N of 1 experiment…
Responded to biologics
June - December
http://healthstories.se/?p=13
RA Disease Burden in Sweden Decreasing
BLUE Gavle
starting Open-Tight clinics
RED Sweden
2002
2012
Margolis: Improve Care Now
IBD remission
rates improved
from 55% to 79%
Co-Design
Innovation
2007
IBD Remissions: 2009 to August 2014
Now 79%
78.7
Denominator: 6347
Starting Rate was
55% in 2007
2009
2014
Source: ICN, P. Margolis et. al. The measure of remission is the physician's global assessment
which constitutes whether the patient has symptoms and evidence of disease on a Likert scale.
Collaboratories & Coproduction:
A New Model
Part 3
A CF Care Model Fit for the Future
CFF Video
October 2014
Collaboratories …
A curious word … Journal Science
Science, 7 March 2008
“Traditional scientific methods need to
be expanded to deal with complex
issues that arise as social systems
meet technological innovation.”
Ben Schneiderman, Science 2007
Collaboratories & Coproduction:
A New Model
Technological
Innovations:
Registries + Networks
Social Systems:
Patients + Providers
October 16, 2013
BIG Idea
“All services, at some level,
are co-produced.”
Paul Batalden
New Model:
Linking People, Information, and Knowledge Generation for Better Health
Aim: We aim to build a learning
health system where patients,
providers, and researchers partner to
co-produce optimal health and high
value care.
Key Mechanism: A registry-supported care and learning system that integrates: data
feed forward systems, patient-centered clinical decision support “dashboards”,
meaningful reports available to patients and providers, patient and provider
networks, and multi-stakeholder learning collaboratives.
Learning Health System
For More Effective Action by Patients, Providers, and Researchers
Patient
& Family
Feed Forward
PRO Data
Feed Forward
Clinical Data
Partnership for
Co-production
Provider &
Care Team
Shared Information Environment
Personal Health Records
Patient Facilitated Networks
Registries
Electronic Health Records
Collaborative Improvement
Networks
Optimal Health and High Value Care
for Patients and Populations
© 2014 Trustees of Dartmouth
College and Karolinska Institutet
“The future is here.
It is just not well distributed.”
Sweden
Sonia on
cell phone
briefing her
mother on
her visit to
her CF team
Sweden
Agenda
Notes & Actions
Clinical
Status
Functional
Status
Concerns
Sonia’s “same page care” dashboard used for visit with her CF team
Delivering Value: Just 3 Ways
• Solution shop
• Value chain
• Facilitated network
Part 4
Solution Shops
CF Centers of Excellence? CF curated & facilitated network?
Value Chains
Mission: to eliminate
needless blindness
CF value chain: routine nutrition and lung function
assessment and core treatment plan
Facilitated Networks
Welcome to Wikipedia,
The free encyclopedia that anyone can edit.
4,605,853 articles in English
Cystic Life
“Real. Positive. Community”
7763 members and counting
“PatientsLikeMe Is Building A
Self-Learning Healthcare System”
Paul Wicks, Medical Architect 3/1/13
1000+ CF Patients
Delivering Value: Living with CF
Longer & Better
• Solution shops
• Value chains
• Facilitated networks
Fueled by a new CF care model fit for
the future
Supported by a registry-enabled care
and learning system
“In future, in a well designed system, shops and chains
may become nodes in the network.” P Batalden 9/19/14
Upshift in Health Care Payments
Old Cost Stream:
New Value Stream:
Illness Pays
Health Pays
$$$$$$
Patient exits home when sick
Person healthy doing self-care
Primary Care
Primary Care
Specialty Care
Specialty Care
Hospital Care
Hospital Care
Quaternary Care
Quaternary Care
$$$$$$
Opportunity for
CF Community
Imagine … a new CF care model supported by a
collaboratory for coproduction of care, innovation,
improvement and science.
Imagine … a continuously improving system for cocreated and co-produced care.
Imagine … a CF care model that is fit for the future.
Part 5
Imagine in a few years…
•
People & families living with
CF are confident & competent
in self management & can
contact similar people &
health experts any time night
or day
•
Scientific collaboratories use
data from CF patients and
clinicians to discover &
spread information on what
treatments work best for what
kinds of patients under what
conditions
•
CF Care teams are in contact
with & can respond to
patients & families whenever
needed to rapidly adjust
treatments to achieve better
outcomes & can rapidly adopt
new best practices
•
CFF & specialty societies
make learning &
improvement, based on
relevant data, part of every
day practice & continuous
professional development
& performance reporting
Imagine …
Children born with CF ‒ in Atlanta or
Peoria or Tallahassee or Seattle or
Winnipeg – expecting to live just as
long as anyone else.
References & Resources
1.
Marshall, BC, Nelson EC. Accelerating implementation of biomedical research advances: critical elements of a
successful 10 year Cystic Fibrosis Foundation healthcare delivery improvement initiative BMJ Quality and Safety. April
2014 Vol 23 Supplement 1.
2.
Nelson EC, Meyer G, Bohmer R. Self-care The New Principal Care. Journal of Ambulatory Care Management. 219-225
Vol 37 No 3 July-September 2014.
3.
Black N. Patient reported outcome measures could help transform healthcare. BMJ 2013, Jan 28; 346:f167.
4.
Essen A, Lindblad S. Innovation as emergence in healthcare: unpacking change. Soc Sci & Med 2013, (93): 203-211.
5.
Meyer GS, Nelson EC, Pryor DB, James B, Swensen SJ, Kaplan GS, Weissberg JI, Bisognano M, Hunt GC, Yates GR,
Hunt GC: More quality measures versus measuring what matters: a call for balance and parsimony. BMJ Quality and
Safety Journal August 2012. Published Online First: 14 August 2012 doi: 10.1136/bmjqs-2012-001081
6.
Nelson EC, Butterly J, Colacchio TA, Mastanduno MP, Foster TC, Batalden PB. Better Patient and Population
Outcomes: Practical Approaches that Health Care Systems Can Adopt for Measuring the Health of Patients and
Populations, in Sustainably Improving Health Care: Creatively Linking Care Outcomes, System Performance and
Professional Development Batalden PB, Foster TC (eds.), Radcliffe Publishing, Ashland, Ohio, 11-31, 2012.
7.
Nelson EC, Hvitfeldt HF, Reid R, Grossman D, Lindblad S, Mastanduno MP, Weiss LT, Fisher ES, Weinstein JN. Using
Patient-Reported Information to Improve Health Outcomes and Health Care Value: Case Studies from Dartmouth,
Karolinska and Group Health. Technical Report. The Dartmouth Institute for Health Policy and Clinical Practice. 2012
8.
Wasson JH, Forsberg HH, Lindblad S, Mazowita G, McQuillen K, Nelson EC. The Medium Is the (Health) Measure Patient Engagement Using Personal Technologies. Journal of Ambulatory Care Management. 35 (2); 109-117April-June
2012, doi: 10.1097/JAC.0b013e31823a235e
9.
Nelson EC, Fisher ES, Weinstein JN: A Perspective on Patient-Centric, Feed-Forward “Collaboratories” in IOM (Institute
of Medicine) Engineering a learning healthcare system: A look at the future: Workshop summary, The National
Academies Press, Washington, DC, 149-170, 2011.
10.
Nelson EC, Batalden PB, Godfrey MG, Lazar JS: Value by Design: Developing Clinical Microsystems to Achieve
Organizational Excellence, Jossey-Bass, 2011.
11.
Hvitfeldt H, Carli C, Nelson EC, Mortenson DM, Ruppert BA, Lindblad S. Feed Forward Systems for Patient Participation
and Provider Support; Adoption Results from the Original US Context to Sweden and Beyond. Quality and Safety in
Health Care, 18(4); 247-256, October-December 2010.
12.
Christensen CM, Grossman GH, Hwang J. The innovators prescription: a disruptive solution for health care, McGrawHill, 2008.