1. Web-empowering NHIN and the Chronic Care Model to meet ecological patient care and unmet surveillance needs R. Wade Schuette April 21, 2006

2. Journals can be private journeys 3. Or, journals can help us share life with a friend 4. Human collaboration Hierarchy and where people want to end up Data level messages, health record updates Coordination: scheduling activities Alignment sharing knowledge and terms Reputation building caring trust and honesty Gaining access just call out my name Building good working-relationships Build relations outside the office. & between reimbursed visits. Building spiritually-supportive relationships, not disjoint encounters Building loving, caring, permanent friendships 5. Proposition The way to build surveillance and healthbehavior ecological control systems is to work from the patients upwards, not from the health-care system downwards. Humans are motivated to network, webtechnology supports that, and a business model exists for bypassing centralization. 6. Current Chronic Care Model http://www.improvingchroniccare.org/change/model/components.html The focus is on improving the Health Systems tools The model is asymmetric: System side has Team Patient side has Patient It models interrupted conversations, not living human relationships The community is a resource not a partner 7. So, where do systems come from? Build Buy Grow 8. Where do surveillance systems come from? Build (Health-Track ?) No political will No funding Buy Grow 9. Where do surveillance systems come from? Build Buy No funding Doesnt work without sensors / inputs Grow 10. Where do surveillance systems come from? Build Buy Grow design for evolution Emergent systems can be robust, adaptive Bypass the federal choke-points Self-supporting business model Leverage new web technologies Start from the patient end this time 11. Lets explore the Grow option Old public health model has broken down. Federal government is unresponsive Decision-making is not scientific Consolidation into DHS only hurt Long term prevention is not their priority Privatization is one response Change the model, but Explore without undercutting other efforts 12. Others do this already Weather and climate forecasting Feds keep cutting back NASA, NOAA global warming research constrained private services have a strong niche Economic data tracking Trend is less federal data over time, not more Many private companies pick up areas feds prefer not to track publicly. 13. Compatible with HIPAA, NHIN? Actually, patients own their own data Yasnoff and Regional Health Consortia If patients insist, cant be blocked now But different from Yasnoffs plan His concept is health-care system based My concept is outside the health-care system On Ed Wagners Chronic Care model Forget the right side (institutions) Build on the left side (patients) 14. Wagners Chronic Care Model http://www.improvingchroniccare.org/change/model/components.html Health System on the right side has major IT systems support. Patient is on left side has no IT-support But the patient is supposed to be the decision maker and locus of control. So thats exactly backwards. 15. Why build on left side ? Theres huge funding going into the right side already. Its not going to work for the same reasons it hasnt worked yet. Money wont help. Institutions move slowly. People, weblogs, teenagers can change overnight. We need a breath of fresh air here Time to actually be patient-centric 16. Patient-Centric For chronic care, the patient must be the locus of control. The health care system is secondary. Were putting all the funding into the wrong side of the picture. The patient needs better computersupport systems more than the doctor does. So, whos designing that? 17. Problems with Chronic Care IT Personal / clinical level - EMR Patient chart is sparse, fragmented Different disease-specialties dont talk Inertia: like turning an aircraft carrier Huge liabilities, costs, vested interests Still missing 99% of life between visits Wrong model assumes clinician is in control, but patient needs to be driving. 18. Surveillance model problems: sensor array The sensors used are unresponsive Motivation: MDs dont need one more task Hospitals not oriented to public health or environmental / community issues Result: compliance rate of reporting is low ER detection (RODS / ESSENCE-II) systems only collect data for known syndromes. Not agile reconfiguring takes a decade 19. Surveillance Model Problems: Data Aggregation Local / state health departments overburdened, under-funded CDC is on a very tight leash What data can be collected is political Data embarrassing large corporations is not welcome Even with risk of chemical WMD, tracking environmental toxins is not encouraged Also not agile 20. Summary Many players dont want better surveillance, prefer dark-corners Federal model has significant component of suppression of data, people, and groups that dont support pre-decided policy. Political will isnt weak its actually strong on the side of LESS independent surveillance. 21. Conclusions Model of federally-supported significantly improved chronic-care and environmental hazard surveillance system wont fly. Despite being logical and scientific Prevention isnt sexy, results too far away Vested interests oppose it Task is technically surprisingly complex It doesnt have legs to compete for dollars. 22. Are there alternative paths? Where do systems come from? Build: too complex, no political will. Buy: cant work without input. Grow: This might work 23. First, orientation re weblogs Forget what you thought you knew about weblogs. They are totally different. Weblogs have to be viewed from above, in emergent social space Imagine someone first proposing writing language down, and arguing why that would be worth all the effort involved. Capturing the conversation is transformative. It changes everything. 24. SECTION ON WEBLOGS What is this new technology? Pew Internet reports over 85% of teenagers use weblogs. Content is input by users not vendors The system grows instead of being designed. 50 million people providing content, instead of 50,000 vendors. 25. Consider the computer power Desktop computers are now 1 Gigahertz. Thats more power per person than entire corporate or hospital computers had in 1980. There are ballpark 50 million PCs networked. Massive parallel entry, such as role-playing games, are created daily, by teenagers. This technology is light-years ahead of hospital systems, and essentially untapped for surveillance or chronic-care. The key is to decentralize control and actually empower patients, not doctors, not the fed. 26. Journals can be private journeys 27. or discover new friends 28. or make a network of friends 29. Or a network of working relationships 30. or adorn that network Chrismas tree 31. Or empower that network 32. ..and provide automatic QA Referrer, recommender, reputation trail and weights 33. And tackle problems together that we should never try to do alone Amish barn raising. 34. Lets review Wagners Model 35. Current Chronic Care Model http://www.improvingchroniccare.org/change/model/components.html The focus is on improving the Health Systems tools The model is asymmetric: System side has Team Patient side has Patient It models interrupted conversations, not living human relationships The community is a resource not a partner 36. Wagners patient-centric http://www.improvingchroniccare.org/change/model/components.html Lack of care coordination Lack of active follow-up to ensure the best outcomes Patients inadequately trained to manage their illnesses the Chronic Care Model, summarizes the basic elements for improving care in health systems at the community, organization, practice and patient levels. 37. Look at the patient model Patient Training to self-manage illness People seldom do this alone or in isolation self-control versus social, ecological context Cognitive Decision-Support rational-actor model of patient Courage/persistence/action support Frail, scared, emotional model of patient Most models assume people (caregivers, patients, staff ) have spare time, energy 38. Why hosp 30 years behind IT? Nothing has changed. Its wicked-2, like FEMA If anything, assembling will only increase the Christmas tree paralysis. Many people exploring it, in any case, so more power to them, but lets see what else there is. 39. Where do systems come from? Build Buy Grow 40. Out of sight, out of mind Hospital end and unprecedented busy-ness < 15 minutes total Manage 800 pts Stakeholders (machine ping.) Whats my metric work the test. McDondalds EMR dehumanizing, no photo, no care even wrt paper chart. PCP != Family MD Cant afford a nurse. Help desk driven Policy $3K/Gig versus $100/Gig for reliability and STASIS. 41. IT Tail wagging clinical dog Help desk defines what services offered CPOE constrains dialog EMR constrains charts, graphs Mainframe legacy all caps, no highASCII, no photos Watch IT face when ask for PDF, photos, movies, Voice removed to save space. 42. Is this the right algorithm? Hospitals are 25 years behind the curve. No reason to be confident that a program to speed that up will work. (Gall, ) Massive, expensive, catastrophic failures. Are we solving the wrong problem? or solving the problem wrong? AI many simple rules, not a mega-rule. Is NHIN still trying to make a mega-rule? TELL ME AGAIN How exactly are the HOSPITALS and MDs going to make MORE money if CMS-plan is successful at CUTTING costs = ($$ transfer to AMA). ANY PLAN THAT RELIES FOR SUCCESS ON REDUCING THE WEALTH OF THE WEALTHY IS GOING TO DIE A TERRIBLE AND unexpected/ baffling death by 1,000 cuts. DITTO any plan that reduces the POWER of the POWERFUL.(CU). DITTO any plan that will cast more light into dark spaces, esp historical. # Guilt, Fraud, Skeletons, Bribes, Cover-Ups would make DC blush. * NO way to share PATIENT data w/o sharing CAREGIVERs DECISION history. 43. The Multiple Context Dilemma Data is captive to context, inescapably. Contexts are deeply embedded in community. (More so if look globally). (Serious noise issue) Maybe we only need translation capacity for messages, not to all learn one language or use one vendors system. Maybe we can leave the data distributed, not try to consolidated it all in one place. (RSS feeds.) How would federated Single Virtual View work? THERE isnt, and CANNOT BE, a flat ontology. 44. They kill myth-busters, dont they? Billing fraud, patient-lawsuits, clinician and Hospital reputation impact (Close the door!) Hospitals not about to publicize how bad their own data is. Maybe dont even know. Once you start comparing notes across doctors and systems, this problem moves to the front and can dominate everything else. What happens when we trade notes, and the notes disagree? Pause and consider DMS & CTS merge. Multiple-conflicting streams of noisy data How do you address a problem that everyone has agreed to pretend doesnt exist? 45. Ignorance of Inference wrong tools Even if hospitals WANTED to fix workflow issues, they dont have access to the correct tools (rules-based inference engines and debriefing workstations and processes.) So, get biofeedback into mgmts perception (I dont even want to SEE the problem if it will turn out I cant FIX it.) 46. So Impasse. Everyone is paralyzed -- deer in headlights deadlock. Already behind the maintenance curve. New features add N-factorial complexity Unless the algorithm is changed, IT WILL BREAK, odds 100% (p < 0.001) Lethal Arrogance Natural Catastrophes Gamblers ruin (Stochastic walk) Galls rule (whats put in to help will hurt.) As inconceivable as The Pandemic Will Come 47. Classic Impasse deadlock Cant admit theres a problem unless we have a solution. Cant get to a solution unless we address the problem Cant address the problem unless we admit it exists. 48. So, we need dissolution not De Solution We need to dissolve the problem from the sides, without ever admitting it exists. Even if the analysis is flawed, this should help accelerate those who are now trying to solve it (locally empowered niches.) Strong upside possibility, low cost, low downside risk, doesnt interfere or fratricide other solutions. Tell me more. How would this work?? 49. Blog and web as catalysts These can release the drain-clogs that are blocking up our other QA, QI efforts. More like aspirin / coumadin blood thinners. Edisons smallest missing piece. Actually, q is, WHOSE OX IS GORED? This will change how the money flows and the losers will fight-back actively. Strategy come in under the radar, emergent (in their blind spot.) It WILL remove habitat where fraud, negligence, greed, incompetence have been hiding. More will be revealed than the inhabitants of that space would prefer. Cascade upwards upper management will look bad cause they didnt know or tolerated or knew about or participated or headed the bad stuff. 50. This will cut into someones profits and freedom of action There have to be losers Loss of ego may be dominant turf thats protected at all costs. (Semmelweiss.) Ecological dont underestimate the sustaining, recovering, retaliating active response. Drug Cos are congresss $$ source. You have to deal with this without being explicit or even dislaying a hint of awareness that it exists. 51. The Chronic Care Model identifies the essential elements of a health care system that encourage high-quality chronic disease care. These elements are the community, the health system, selfmanagement support, delivery system design, decision support and clinical information systems. Evidence-based change concepts under each element, in combination, foster productive interactions between informed patients who take an active part in their care and providers with resources and expertise. 52. http://www.improvingchroniccare.org/change/model/components.html We list more specific concepts under each of the six elements. Based on more recent evidence, five new themes were incorporated into the Chronic Care Model: Patient Safety (in Health System);Cultural competency (in Delivery System Design);Care coordination (in Health System and Clinical Information Systems):Community policies (in Community Resources and Policies); andCase management (in Delivery System Design). 53. Collaboratives for HSO Teams are better than lone individuals Learn Best Practices Make New Friends and allies Sustain enthusiasm across barriers Sustain optimism from multiple-contexts Help solve each others problems Caregiving humans find these helpful 54. Collaboratives for Patients Teams are better than lone individuals Patients have practices and procedures Patient systems have room for improvement too Patients collaborate and communicate Patients need to sustain hope, enthusiasm, focus across time So, how do patient-type humans create collaboratives and make use of them? 55. Few minutes of F2F MD and PT are wasted because PT cant copy or give informed consent in that situation. 56. Human collaboration Hierarchy and NHIN target levels (first three). Data level messages, health record updates Coordination: scheduling activities Alignment sharing knowledge and terms Reputation building caring trust and honesty Gaining access just call out my name Building good working-relationships Build relations outside the office. & between reimbursed visits. Building spiritually-supportive relationships, not disjoint encounters Building loving, caring, permanent friendships 57. Human collaboration Hierarchy and Human target levels (last 6). Data level messages, health record updates Coordination: scheduling activities Alignment sharing knowledge and terms Reputation building caring trust and honesty Gaining access just call out my name Building good working-relationships Build relations outside the office. & between reimbursed visits. Building spiritually-supportive relationships, not disjoint encounters Building loving, caring, permanent friendships 58. Summary The way to build surveillance and healthbehavior ecological control systems is to work from the patients upwards, not from the health-care system downwards. Humans are motivated to network, webtechnology supports that, and a business model exists for bypassing centralization.