The Jackson Hole Group has confirmed the American health system is dangerously dysfunctional and deteriorating. The symptoms are the return of medical inflation and the persistence of unacceptable gaps in patient safety and quality of health care. We urge rapid deployment of electronic personal health records and contractual agreements between patients and their physicians to make available authoritative knowledge-sharing pathways and to rely on evidence-based clinical guidelines. The resulting new information-driven health system will be able to increase its productivity, enhance effectiveness and accountability, advance our understanding of health outcomes, diffuse the toxic legal climate and give patients real power and responsibility. The tools are relatively new but without any technological breakthroughs, these goals are within our reach. But, their timely implementation requires Congress and the President to Cross the Health Policy Chasm by helping to overhaul the health delivery system and traditional agreements between providers and patients. The sick American Health Industry is incapable of healing itself.
Since 1970, successive waves of medical inflation have precipitated public and private attempts at health system reform by manipulating the financial incentives for patients and providers and, to a lesser extent, attempting to control the supply of health care resources. None of these indirect reforms has had a lasting salutary effect on the structure and incentives that determine the health system's performance. American health policy makers have been reticent to take responsibility for changing the high probability, high risk, and independent behaviors that account for the health system's failures. In 1970, the Nixon Administration's then radical HMO policy relied on economic market forces to reshape the health system. After a promising start, the health delivery system regressed to its former state. In 2003, the same policies prevail: the Administration's Medicare drug proposal assumes that patients, health plans and providers will provide the stimulus for a health system that will wisely and economically provide drugs. The Jackson Hole Group's 35 years of health care reform experience has concluded that lasting and substantive health care reform is beyond the capabilities of the classic economic forces
that shape the rest of the economy. No real business could survive if it accepted such erratic performance from its suppliers.
The federal government's historic and understandable reluctance to directly confront the way the health system works is based on three factors:
- The bond between doctors and patients is presumed to be more trustworthy than any outside force;
- The government has too much of a stake. The federal government controls almost $700 billion (or 50%) of the annual health expenditures; the largest private buyer (General Motors) spent $4.2 billion on healthcare in 2001;
- The lack of public institutional memory or continuity of responsibility for the policies tried during previous health crises or for the health delivery system.
The Jackson Hole Group's health reform proposal "Pathways to Healthy Outcomes" (PATHOS) requires collaboration between federal and state governments to define and standardize some aspects of health delivery reforms without directly participating in their application. Medicare could drive the overhaul by only purchasing healthcare from accountable, information technology and clinical guidelines-compliant providers by a date certain, like 2008. The political stakes are high. They are so high in this $1.4 trillion industry, that only a bipartisan political deal can make it happen. PATHOS doesn't shift the ownership of any private health enterprise to government. It strengthens and sustains the doctor/patient relationship by contractually defining the responsibility of each party and by making authoritative health care advice and feedback continuously accessible. It sets public standards for those activities that are beyond the capabilities of the massive and divided health industry. It leads to universal health insurance within five years.
A healthcare overhaul of the magnitude envisioned by PATHOS cannot be done right or sustained unless the federal government and HHS health policy and organizational apparatus are also overhauled. The overhaul should recognize the government's responsibility to continuously and openly evaluate and improve the performance of the health delivery system.
Pathways to Healthy Outcomes anticipates four major changes: overhauling the health delivery system, enhancing by contract the power of patients, redefining the role of government as a change agent and regulator, and assuring health insurance for all Americans. We've restated as imperatives most of the recommendations for overhauling the health delivery system contained in the Institute of Medicine's March 2001 seminal report "Crossing the Quality Chasm."
Objective # 1 -- The first major element of PATHOS: An Overhauled Health System that can curtail medical inflation, increase productivity, improve quality, attack inappropriate and unsafe practices, and hasten the application of health advances that are well-grounded in science.
Accomplishing these remarkable improvements requires industry-wide deployment of interdependent tools of proven effectiveness: electronic health records for all essential care, reliance on evidence-based guidelines bolstered by outcomes-driven support systems, practice reorganization like that involved in disease management and safety programs, an Internet-based knowledge-sharing pathway, systematic measurement and disclosure of outcomes leading to better informed consumers and the real time identification of effective diagnostic methods and treatments.
We recommend the universal availability of personal electronic health records that are secure and unambiguously the property of patients. Patients can agree to share all or part of their record with others. The patient's personal health records should be accessible in case of emergency, transferable and allow for seamless electronic entries into the medical record systems of providers designated by the patients. Those who contribute to the record should be identified in the record. Priority should be given to the electronic medical record that meets the clinical needs of the primary or personal physician(s). We have singled out primary care because everyone needs someone to deal with them as a whole person over extended periods of time, especially as genomics or predictive medicine gains in importance. The personal/primary physician's role will become that of a confidante, interpreter, and integrator of health care; not a gatekeeper, or a substitute for specialists.
We have been following and are encouraged by the American Academy of Family Physicians' project to develop a low-cost open-source electronic health record for primary physicians and urge the American Academy of Pediatrics, American College of Physicians, American College of Obstetrics and Gynecology to collaborate on this project. The development of unique and often more elaborate electronic medical information systems for each specialty, multi-specialty group, and large institutions (like academic health centers and hospitals) is equally important and is proceeding unevenly but more rapidly than that for individual physicians. Too often these complex, costly, separate proprietary health information systems do not interface electronically with each other so that as patients acquire new maladies or select new providers, their record might become electronically orphaned. The irony is that electronic medical records' fabulous potential to follow and integrate the history of the patient's health life could be disrupted by the innovative and risk-bearing workings of the software marketplace and the continued insistence by practitioners of their primacy and autonomy. Even a public-spirited firm like Kaiser Permanente Health Plan is preparing to spend $1.8 billion on yet another unique proprietary source-coded electronic medical record. The sunk costs that must be circumvented for the sake of patients will carry an increasingly high price tag. Perhaps there is an integrating interface standard that electronic medical record vendors will quickly agree upon, but to outside observers like the Jackson Hole Group it's time for the federal government to use its purchasing power and a new standard-setting agency to make certain that patients' personal electronic health records are universal, secure, transportable and integratable. The imposition of seamless interface standards for electronic health records should not preclude proprietary competition around other aspects of information technology such as knowledge capture, decision support, and smart technologies like automated pacemakers.
Personal electronic health records are the changing but passive biographies of our health lives. The active clinical analogs to electronic health records are guidelines for prevention, diagnosis and treatment that are based on the best available scientific evidence. The availability of clinical guidelines speeds the entry of information into electronic health records. Guidelines are algorithms that facilitate uniform follow-up. Failure to manage healthcare consistent with what has been demonstrated to be safe and effective accounts for healthcare's anomalous results. There are atypical patients or complex circumstances where educated judgments or trial and error methods apply. If electronic health information systems are used to track these unusual cases, the intervention and results should become increasingly standardized and predictable. The processes for devising electronic health guidelines have become routine in numerous national and regional guidelines development centers around the world. America's guidelines application process will be advanced if we have officially-recognized guidelines. They would be advanced further if payment for health services is tied to adherence to official guidelines. The Institute for Medical Practice and Consumer Technology (IMPaCT) described later (objective #3) could have the responsibility to assure the availability and timely revision of evidence-based clinical guidelines. The contractual "Agreement on Responsibility" (objective #2) could link them to reimbursement.
The overhaul of the health system's next features are Internet-based Health Information Pathways between providers and consumers. These are the authoritative final common pathway of health information to and from patients and their designated providers. Consumers would not be prevented from independently obtaining health information through other portals. The multipurpose Health Information Pathways will be used by patients for consultations, to obtain coaching, to upgrade their personal health records, to schedule appointments, to receive alerts, warnings and test results, to obtain decision support, prescription renewals, progress reports to evaluate their care, and to monitor various physiologic functions, etc. Its authoritative content, accessibility and utility will be linked to a severable "Agreement on Responsibility" (objective #2) with a personal physician designated by the patient. A small but growing number of physicians and patients actively communicate using the Internet. Physicians who extensively use the Internet to communicate with their patients report that up to 50% of office visits can be superceded by this mode of consultation. The widespread application of Internet communication between providers and patients has been impeded by the lack of reimbursement by insurers, the paucity of powerful decision support software, security concerns, and apprehension over unknown liability risks. PATHOS calls for compensation of providers who manage Health Information Pathways and a new approach to the legal issues that face those who rely on evidence-based clinical guidelines and the Internet to provide services to their patients. The presence of an electronic health record abetted by real time queries and responses should accelerate the development of more functional decision support systems.
The last part of the Health Delivery Overhaul is a routine Outcomes Measurement and Management technology for collecting, pooling and analyzing progress reports and physiological data from patients. Much of this information can be captured and used in real time to evaluate and guide the patient's care. The breakthrough feature of this systematic feedback component is the opportunity to establish enormous databases containing diagnostic, therapeutic and outcome information. These databases should allow researchers and even computerized analytic systems to identify and improve the efficacy of various approaches to prevention, diagnosis and treatment. The ultimate goal is to use computerized information systems to collect outcomes data -- to produce more robust clinical guidelines -- to make recommendations that automatically appear on providers' and patients' computers. These outcomes databases should prevent the embarrassing recent revelations that have challenged conventional beliefs on post-menopausal hormone replacement, disparaging the Adkins diet, sinus surgery, arthroscopic knee surgery and surgery for scoliosis in children.
Objective #2 -- The second major element of PATHOS -- the "Agreement to Share Knowledge (ASK)" -- positions patients to determine the direction of the health system by giving them more information, power and responsibility. The provider control and possession of clinical knowledge, particularly at the time of illness, has prevented consumers from exerting significant influence on the health system's performance and structure. This consumer weakness accounts for the stability of the health system's structure as a provider-centric enterprise. Exaggerated assumptions about the power of consumer financial choices to permanently change provider behavior or the health system's structure have undermined everyone's including our attempts at health system reform. The most novel and untested but essential part of the PATHOS proposal aimed at giving patients increasing power establishes a severable contract between the patient and a personal physician for the provision by the physician of an authoritative, continuously available Health Information Pathway and a willingness to rely on evidence-based guidelines. This "Agreement to Share Knowledge"or ASK incorporates provisions that enable consumers to exercise power in other technologically advanced information systems. The Internet and telecoms have demonstrated that in information-rich environments performance is shaped by consumers moving between sources of electronic information based on their perception of the quality of the content, in this instance, health information and the responsiveness and accessibility of the information. Consumer power becomes even more real if a tangible product is tied to the information system. Amazon is a prime example where choice, access, content, and products are combined to attract and hold customers. PATHOS envisions a contract between patients and their personal physicians that involves all of these elements in the Health Information Pathway and where appropriate, evidence-based health care. The patient's responsibility is to adhere to and accept the clinical guidelines-based treatment and to provide information about outcomes as requested. Facct.org has prototype Agreements to Share Knowledge and discussions of their utility. One further incentive for providers might be feasible to give them protection from law suits if they have appropriately selected and applied evidence-based clinical guidelines.
Objective # 3 -- Establish an Institute for Medical Practice and Consumer Technology (IMPaCT). The federal government should assure that advances in information technology and health science are rapidly and appropriately incorporated into health care. IMPaCT could be established in the Department of Health and Human Services or preferably as a quasi-public agency to develop scientifically justified standards for healthcare and health information. These new activities could be undertaken by an expanded AHRQ, but it would require statutory insulation from pressure by vendors such as those who effectively drove AHRQ out of the evidence-based guidelines business. Standards have preceded the wide-spread adoption of information technologies in banking and other industries where information must be shared and moved about unambiguously and securely. The Institute for Medical Practice and Consumer Technology should be responsible for the development and enforcement of:
- standards for electronic health information content and transferability,
- evidence-based clinical practice guidelines development and technology assessments,
- specifications for conditions, interventions and outcomes to be measured and accounted for via the health information pathways (i.e., registries). Special emphasis should be given to common conditions whose outcomes are rarely measured.
Objective # 4 -- The final element of the Jackson Hole Group: Health Insurance protection for all Americans. We have analyzed various health insurance proposals and are persuaded the most sensible approach before Congress is the Wyden-Hatch legislation. We like this proposed legislation because it is bipartisan, gives adequate time to consider the complex ramifications of expanded coverage, and relies on consumer input.
The delay in implementing universal coverage is justified because of a complex repackaging job required to integrate and optimize existing defective health insurance programs. Senator John Breaux refers to them as "boxes" in his proposed approach to mandatory coverage. Dr. William Brody (President of Johns Hopkins University) has suggested that the widespread application of genetic testing or predictive medicine is incompatible with experience-rated health insurance and, the Jackson Hole Group would add, employer-based self-insurance. Finally, before embarking on any new program of health entitlements, we must verify the ability of evidence-based guidelines and electronic health information systems to constrain overuse, underuse and misuse of healthcare.
The PATHOS approach is dependent on new health knowledge management technology
which, along with advances in science, enables making the pros and cons of various approaches to medical care understandable to the public and providers Overhauling health delivery and penetrating this professional curtain without undermining the importance of accountable skilled health professionals is key to making health care work for everyone. It is an immediate and unavoidable responsibility of the federal government.
In order to improve the efficiency, productivity, safety, and quality of U.S. health care, the Congress must establish a basic, uniform, national information infrastructure and a process for its further development and implementation. This core, public-interest infrastructure will address four functions:
- Electronic health records
- Evidence-based clinical practices
- Public disclosure, analysis and feedback of quality performance information
- Giving patients genuine power and responsibility
In each area, the nation can begin by endorsing the substantial body of knowledge already available and can put in place mechanisms to continuously update and improve the first-generation systems. These infrastructure elements should be applied, immediately, to pending Federal programs including any Medicare prescription drug benefit, and as soon as it is feasible extended to all other Federally funded health programs. The private sector should be encouraged to follow the federal governments lead.
Step 1: Sense of Congress Resolution regarding urgent need for portable, standardized personal health records and applying evidence-based practice guidelines.
A Sense of Congress resolution will signal Congressional intent to require Federally funded health care providers and insurance plans to implement uniform electronic information requirements over the next five years. The resolution should highlight the serious safety problems and wasteful inefficiencies that can only be corrected through uniform, accessible information, the inability of the private sector to agree upon modern information systems without public sector stimulus and standards, and the vital national interest that requires Federal action.
Step 2: Medicare prescription drug plan information requirements.
Any prescription drug plan which uses Federal funds must include specific information requirements. These include establishment of a secure, private, open-source, Internet-accessible electronic drug record for each beneficiary, publication of evidence-based drug guidelines, and mandatory disclosure of operating performance and outcomes information.
A comparable drug plan could be undertaken by state health insurance programs as a precursor to a broader overhaul of healthcare.
Step 3: Federal agency to set and maintain information standards.
The Congress must establish an independent federal agency to (1) endorse and maintain standards for electronic health records, (2) define evidence-based guidelines as they may affect payment or liability, and (3) define performance indicators for mandatory disclosure. The high levels of public and private sector interest in these areas today are having little impact on the quality or efficiency of care because of extreme fragmentation and lack of enforcement. Only a federal agency with the standing of FDA or the SEC can assure uniform compliance with basic information standards.
Step 4: Medicare payment contingent upon compliance with Federal information standards.
Medicare should be prohibited from paying any health care provider or intermediary that fails to implement the federally authorized information standards by a date certain (e.g., 2008). The "first-generation" requirements are likely to include adoption of essential information technology (secure, readily transferable personal electronic health records) adherence to appropriate evidence-based guidelines, and collection and disclosure of standardized performance information based on "Agreements to Share Knowledge" between physicians and patients.
