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.