Consumer/Patient Engagement Power Team Unveils Recommendations

The Consumer/Patient Engagement Power Team is assessing the Standards and Certification Criteria NPRM and providing recommendations for strengthening consumer/patient engagement components. The Power Team has prioritized recommendations to enable patients to participate as partners in their care. These recommendations can be downloaded here, and I have embedded them below. The presentation to the April 18, 2012 HIT Standards Committee meeting by Leslie K. Hall was truly outstanding. Take a few minutes to listen to this presentation:

Patient Engagement Power Team Comments – Leslie Kelly Hall, Chair

Jim Hansen, Dossia Consortium in the document "Two key EHR-related catalysts to support patient engagement and accelerated health system transformation: Effective view, download and transmit capabilities and actionable recorded patient preferences" outlined the work of this group very well. One of the areas of focus was effective EHR View, Download and Transmit (VDT) Capabilities:

Effective view, download and transmit EHR capabilities are foundational not only for patient engagement but also to support the transformational shift to a learning health and health care system. Each function (view, download and transmit) plays a complementary role in addressing the required use scenarios.
Three core principals emerged from the Power Team discussions in support of this premise:

• Designated Proxy - The patient has the right to designate a proxy (or proxies) indicating that interactions traditionally intended for the patient are handled by the designee(s) with and/or instead of the patient herself. Thus all comments related to patients below also apply to their designee(s), if any.

• CC:ME - Any health information that is shared with providers and/or with the patient as an information exchange, discussion item or handout should be made available electronically with discrete computable fields and/or human readable format, based on patient preferences.

• Incorporation of Patient Generated Data – Much of the information required to inform care decisions is gathered through a variety of inefficient and ad-hoc methods which can be significantly streamlined for efficiency and effectiveness. Standards developed for surveys of patient experience of care can be used in other applications.

The FACA Template for Input on the Certification Criteria to Support MU Stage 2 Objectives and Measures
FACA Template for Input on the Certification Criteria to Support MU Stage 2 Objectives and Measures

Health Reform Lays Groundwork for New Era of Personalized Medicine and More Patient-Centered Health System

Embedded in the Health Reform package are some lesser known provisions that increase emphasis on prevention, positive health outcomes, better coordination of care and comparative effectiveness research that includes personalized medicine, paving the way for a new era of individualized care in a more patient-focused health system. Personalized medicine and patient-centered care will transform health care institutions by 2020, according to a new report by PricewaterhouseCoopers' Health Research Institute: Healthcast: The Customization of Diagnosis, Care and Cure (registration required for free download).

The report finds that between now and 2020, health systems will turn from reactive medicine to proactively understanding and supporting individuals in managing their own health. Many health systems say they deliver patient-centered care, but this research found only pockets in which this is evidenced. Health organizations remain too focused on their own organizations, not what’s best for the patient. Patient-centered care takes health systems out of their comfort zones, forcing them to integrate people, technologies and organizations that are not part of their current routines.

The analysis found that healthcare is playing catch-up to adopt innovations and trends in consumerism from other service industries such as automotive, retail and entertainment. It concludes that healthcare needs to become more adept at customizing health solutions to consumer-centric attributes and segmenting consumers beyond health status or disease group, looking at economic status, personal preferences and cultural barriers to change.

The report also outlines five areas where health systems can customize care and better engage individuals in managing their health.

1. Coordinated care teams: Consumers want coordinated care. Integrated care networks that share information, care and accountability for patient outcomes are likely to become models for the future.
2. Fluent navigators: Individuals lack the knowledge and skills they need to navigate the health system and understand their choices. In a patient-centered health system, there will be a growing need for consumer advocates beyond friends and family. PricewaterhouseCoopers sees the role of healthcare-fluent navigators being played by pharmacists, community workers and possibly the emergence of a new professional field much as financial planners emerged with the rise of consumer-directed investing.
3. Patient-experience benchmarks: In a patient-centered health system, more attention will be paid to understanding and meeting consumer expectations. Many health systems already are tracking and publicly reporting on patient-centric metrics of care, such as cleanliness, wait times and physician satisfaction, allowing patients to make more informed decisions.
4. Care-anywhere networks: The definition of access is being redefined by telehealth, wireless mobile devices, remote monitoring and new care delivery models that move care from hospitals, nursing homes and physicians' offices and into patients' homes, which increasingly are wired with networked devices.
5. Medical proving grounds. Through collaboration and investment, some regions and other countries are positioning themselves to be medical proving grounds, or centers of excellence in medical innovation and care as a way to attract patients, researchers and providers looking for the shortest path to access and innovation.

Three key issues will force a change in today’s health model:

• Rising chronic diseases among young and old
• Technology-enabled mass customization
• Understanding of genetic, behavioral and socio-economic factors on health

Both young and old consumers are developing chronic diseases in record numbers, leading to an explosive consumption of resources that is driving up spending and creating liabilities for future generations.

Diseases that were once fatal are now chronic, which has brought extended life, but also extended spending. Most countries have not analyzed health spending by disease because of the siloed way in which they disperse funding and collect data. However, the rise in chronic disease is spurring health leaders to look across sectors at causal relationships of spending. For example, the World Health Organization’s Global Burden of Disease collects data that compares the impact of disease by country. While aging is often cited as a key driver of health spending, there is a growing concern that spending is increasingly spurred by generations of children facing costly chronic disease. For example, in Australia, respiratory diseases are the second highest driver of health spending. More than one-fifth of Australian children under age 16 have been diagnosed with asthma. On the other end of the age spectrum, neurological diseases, such as Alzheimer’s, show the fastest growth rate in Australia, estimated to increase more than 50% between 2003 and 2023. (See Figure 1.)

Figure 1

Another area is:

Technology is leading healthcare into a new era of “mass customization,” following other industries such as auto manufacturing, media and entertainment.

The results clearly demonstrate global trends in valuations of health systems’ attributes based on age and sex. The population aged 50 and over value high quality and personal attention, whereas younger populations value low cost and health education and wellness. Variations in valuations by sex were even more significant—men ranked high quality and personal attention above women, and women vastly preferred low cost and access compared to men. Response patterns by individuals also indicate a recognition that trade-offs between attributes occur, e.g., high quality over access, low cost over personal attention. (See Figures 2 and 3.)

And third factor identified is:

Chronic diseases are associated with social, economic, genetic and behavioral factors that are largely unaddressed by today’s medical delivery system. The delivery system must interface more effectively across society and with individuals regarding these factors to prevent, detect and manage diseases.

As Figure 4 shows, health leaders believe that individuals should play a larger role in managing their health. But they also believe that individuals need support and tools to do so: “The main responsibility for the prevention of disease falls on the citizens, with clear directives and adequate assistance from government agencies,” said Karam Karam, M.D., the former Lebanese minister of health.

Watch the video of Kelly Barnes: Challenges industry faces when diagnosis, care and cure are customized

Patient Safety and Patient Centered Health IT

The Adoption/Certification Workgroup of the federal Health IT Policy Committee met March 12, 2010. The Patient Safety Working document and analysis are below. Here is the audio of the meeting:

Download




The workgroup proposed to create a new national database and reporting system to track health information technology-related hazards that could affect patient safety. In a draft paper discussed at their meeting they considered a national health IT reporting system where providers could report data on all incidents and potential hazards to a patient safety organization.

“Overall, patient safety is better in health care organizations with IT than in health care organizations without IT, provided that the IT systems have been implemented correctly, and provided that an appropriate improvement culture exists,” the paper states.

The paper also addresses four key areas where potential safety hazards exist. They include technology issues such as hardware failures and software bugs; complex interactions of professionals, workflows, and user interfaces; interoperability problems between applications (such as lab results never making it into the EHR) and implementation and training deficiencies.

“The complexity of the health care activity coupled with the number of individuals involved with an activity influences the probability of an incident,” according to the paper.

In the previous February 25, 2010 Adoption/Certification Workgroup meeting, Jeffrey Shuren, director of the FDA’s Center for Devices and Radiological Health, outlined some of the health and safety risks associated with health IT. Over the last two years, the FDA has received 260 reports of health IT-related malfunctions that could have potentially caused bodily harm, and did actually injure 44 people and kill another six, Shuren said.

These figures were supplied to the FDA voluntarily by patients, clinicians, and user facilities, so they may “represent only the tip of the iceberg in terms of the health IT-related problems that exist,” he said.

Shuren had said these adverse events fall into four categories: errors of commission, such as accessing the wrong patient’s record or overwriting one patient’s information with another’s; errors of omission or transmission, such as the loss or corruption of vital patient data; errors in data analysis, including medication dosing errors of several orders of magnitude; and incompatibility between multi-vendor software applications and systems, which can lead to any of the above. It seems the committee is responding to many of the FDA's concerns in this paper.

Under the draft plan, the national health IT reporting system ideally would be patient-centered and consistent with the vision of a learning health care system. “A ‘patient-centered’ approach focuses more on the patient and less on accountability for an error,” the draft proposal states. “We also want to focus attention on hazards and "near-misses". We want to prevent unsafe conditions that might lead to serious injuries or deaths.”

Impact of Consumer Health Informatics Applications

Consumer health informatics (CHI) is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems.

The U.S. Agency for Healthcare Research & Quality (AHRQ) has released a report on the "Impact of Consumer Health Informatics Applications." The report, prepared by the Johns Hopkins Evidence-based Practice Center and led by Chris Gibbons, is part of AHRQ’s evidence report/technology assessment series. The objective of this report is to review the evidence on the impact of CHI applications on health outcomes, to identify the knowledge gaps and to make recommendations for future research.

The report found that consumer health informatics applications can help improve health care processes, such as medication adherence. These applications are defined as patient-focused electronic tools to support health improvement, process outcomes, and patient-centered care. The benefits of using such applications apply to a variety of clinical conditions, including cancer, smoking, diabetes mellitus, physical activity, and mental health disorders. The report also identified important knowledge gaps in the new and emerging field of consumer health informatics.

The report concluded that "available literature suggests that select CHI applications may effectively engage consumers, enhance traditional clinical interventions, and improve both intermediate and clinical health outcomes" and that while the applications offer significant promise and potential to positively impact select clinical outcomes, more research is needed to determine conclusions on impact.

The full report is available here: (Publication No. 10-E019): (PDF File, 3.6 MB)

Patient Centered Medical Home

The fundamental challenge for health reform is to expand access, while changing the delivery system to provide higher quality care at a lower cost. Current reform success will require a shift in emphasis from fragmentation to coordination and from highly specialized care to primary care and prevention. The Patient Centered Medical Home (PCMH) model is one method to move us in this direction. The PCMH model is founded on 4 cornerstones: primary care, patient centered care, new model practice, and payment reform. Patient centered care is designed to meet the needs and preferences of patients.

The term "medical home" was first used in a book published by the American Academy of Pediatrics (AAP) in 1967 Pediatric Records and a "Medical Home" In: Standards of Child Care. The initial premise was that children with special needs (defined as children with severe chronic illness, developmental disabilities and birth defects or others with high care needs) should have care coordinated by a practice that provided "accessible, coordinated, family centered, culturally effective care by a pediatrician who in addition provides primary care and manages and/or facilitates all aspects of the care for these children."

While the PCMH would encourage patients to identify a medical home, the physician practice would function to inform, coordinate and facilitate specialty care where that care is likely to be of benefit to the patient. The proposed hybrid model of reimbursement includes a per patient per month or year payment, and that payment would be based on the degree to which the practice was using the technology, systems and care coordination specified in the PMCH. While the pay for performance component of the reimbursement might in part be based on resource use/cost, it would not necessarily differ in degree or focus from the same elements applied to sub-specialty practice.

A PCMH demonstration was undertaken Group Health, with the goals of improving patient experience, lessening staff burnout, improving quality, and reducing downstream costs. Five design principles guided development of the PCMH changes to staffing, scheduling, point-of-care, outreach, and management. Group Health provides healthcare insurance and comprehensive care to approximately half a million residents in the northwestern United States. Twenty primary care clinics are located in western Washington State, where patients choose a primary care physician to guide and coordinate their care. These physicians (81.6% family physicians, 3.5% general internists, and 14.9% pediatricians) care for an average of 2300 patients and work in multidisciplinary teams




The PCMH model outlines a payment structure that combines fee-for-service, pay-for-performance, and a separate payment for care coordination and integration. The payment structure is explicitly intended to provide compensation for care coordination, care management, and medical consultation outside the traditional face-to-face visit. The model also calls for financial recognition of case-mix differences, the adoption and use of clinical information technology for quality improvement, savings from reduced hospitalizations, and the achievement of quality targets.

Each of the 4 cornerstones of the PCMH model has its unique strengths and vulnerabilities. Another challenge to the success of the PCMH model is public perception. For some, "medical home" sounds a lot like a nursing home and initial resistance could be difficult to overcome. Also the expectation of short-term cost savings may be unrealistic in many areas. Implementation of the PCMH model will require infrastructure investment and retooling in the primary care practice.



Built on the four cornerstones of primary care, patient centered care, new model practice, and payment reform, the widely endorsed PCMH model has the potential to increase access and quality and to decrease the rate of growth in costs over time. As health reform gains momentum, the PCMH model will become increasingly important.

The Patient at the Center

The Planetree of Hippocrates in Kos, Greece

October is Patient Centered Awareness Month. The Tree of Hippocrates has become a symbol of patient centered care. This is the planetree under which, according to the legend, Hippocrates of Kos (considered the father of medicine) taught his pupils the art of medicine. The tree's association with Hippocrates is the source of the name of the Planetree, an organization of hospitals dedicated to personalizing, humanizing, and demystifying the healthcare experience. The Planetree philosophy is patient centered committed to improving medical care from the patient's perspective. Patients are encouraged to read their own medical records. Their pets are allowed to visit. Families are encouraged to participate in the patient's care, and can even prepare the patient's favorite dishes in special kitchens on each floor. In addition to the most modern and technologically advanced Western medical treatments, alternative options such as acupuncture and massage are offered.

At Planetree We Believe...

• That we are human beings, caring for other human beings.
• We are all caregivers.
• Care giving is best achieved through kindness and compassion.
• Safe, accessible, high quality care is fundamental to patient-centered care.
• In a holistic approach to meeting people's needs of body, mind and spirit.
• Families, friends and loved ones are vital to the healing process.
• Access to understandable health information can empower individuals to participate in their health care.
• The opportunity for individuals to make personal choices related to their care is essential.
• Physical environments can enhance healing, health and wellbeing.
• Illness can be a transformational experience for patients, families and caregivers.

In the past, physicians commonly withheld diagnostic information from patients with patients' tacit consent. Even Hippocrates advocated “concealing most things from the patient while you are attending to him ... revealing nothing of the patient's future or present condition.” In an 1871 Bellevue Medical School graduation address, Oliver Wendell Holmes said:

"Your patient has no more right to all the truth you know than he has to all the medicine in your saddlebags.... He should get only just so much as is good for him.... It is a terrible thing to take away hope, every earthly hope, from a fellow creature... Some shrewd old physicians have a few phrases always on hand for patients who insist on knowing the pathology of their complaints without the slightest capacity of under standing the scientific explanation. I have known the term 'spinal irritation' to serve well on such occasions."

The attitude of Holmes is obviously unacceptable today. Patients increasingly expect to know not only their diagnoses, but also details of pathophysiology, treatment options, and prognosis. These days patients often even challenge their physicians' diagnoses. Patients expect and often demand information that used to be only within the physicians' reach, and physicians increasingly expect that they will share information with patients.

The change in attitude surrounding disclosure of diagnoses stands out when discussing cancer. Not surprisingly, Holmes advocated that physicians avoid the term "carcinoma" when speaking with patients. He would be very uncomfortable at the Celilo Cancer Center where the Planetree philosophy of patient centered care is practiced. Of course there is a delicate balance of keeping hope alive and brutal honesty.

Beyond simply being honest, one argument for informing patients is that information enables patients to participate in medical decisions. In less patient centered days, physicians decided what was best for their patients, and patient participation was limited to compliance with physicians' orders. As the art of medicine becomes more patient centered, participation begins with the patient helping to make medical decisions, and the emphasis will shift from compliance to participation. Including the patient and the entire family in the decision making and care of the patient is important.

Of course, individual patients are different with respect to the amount of detail they want, and the degree to which they wish to participate in decision making. Therefore, the art of patient centered care involves determining the appropriate amount of information and participation from the individual patient's perspective. For some patients, the "right not to know" is a crucial element of patient centered care. For some patients it is not necessarily information that dtermines for them whether they are at the center of their care. The provider must not assume that certain types of patients, based on age, history, or other factors, will favor or disfavor information. This is a part of patient centered care that is very intuitive for the provider.

There is a great deal of interest now in the Patient Centered Medical Home (PCMH). This is a new approach to providing comprehensive primary care. The AAP, AAFP, ACP, and AOA, representing approximately 333,000 physicians, have developed the following joint principles to describe the characteristics of the PCMH:

Personal physician - each patient has an ongoing relationship with a personal physician trained to provide first contact, continuous and comprehensive care.

Physician directed medical practice – the personal physician leads a team of individuals at the practice level who collectively take responsibility for the ongoing care of patients.

Whole person orientation – the personal physician is responsible for providing for all the patient’s health care needs or taking responsibility for appropriately arranging care with other qualified professionals. This includes care for all stages of life; acute care; chronic care; preventive services; and end of life care.

Care is coordinated and/or integrated across all elements of the complex health care system (e.g., subspecialty care, hospitals, home health agencies, nursing homes) and the patient’s community (e.g., family, public and private community-based services). Care is facilitated by registries, information technology, health information exchange and other means to assure that patients get the indicated care when and where they need and want it in a culturally and linguistically appropriate manner.

Quality and safety are hallmarks of the medical home:

• Practices advocate for their patients to support the attainment of optimal, patient-centered outcomes that are defined by a care planning process driven by a compassionate, robust partnership between physicians, patients, and the patient’s family.
• Evidence-based medicine and clinical decision-support tools guide decision making
  Physicians in the practice accept accountability for continuous quality improvement through voluntary engagement in performance measurement and improvement.
• Patients actively participate in decision-making and feedback is sought to ensure patients’ expectations are being met
• Information technology is utilized appropriately to support optimal patient care, performance measurement, patient education, and enhanced communication
• Practices go through a voluntary recognition process by an appropriate non-governmental entity to demonstrate that they have the capabilities to provide patient centered services consistent with the medical home model.
• Patients and families participate in quality improvement activities at the practice level.

Enhanced access to care is available through systems such as open scheduling, expanded hours and new options for communication between patients, their personal physician, and practice staff.
Payment appropriately recognizes the added value provided to patients who have a patient-centered medical home. The payment structure should be based on the following framework:

• It should reflect the value of physician and non-physician staff patient-centered care management work that falls outside of the face-to-face visit.
• It should pay for services associated with coordination of care both within a given practice and between consultants, ancillary providers, and community resources.
• It should support adoption and use of health information technology for quality improvement;
• It should support provision of enhanced communication access such as secure e-mail and telephone consultation;
• It should recognize the value of physician work associated with remote monitoring of clinical data using technology.
• It should allow for separate fee-for-service payments for face-to-face visits. (Payments for care management services that fall outside of the face-to-face visit, as described above, should not result in a reduction in the payments for face-to-face visits).
• It should recognize case mix differences in the patient population being treated within the practice.
• It should allow physicians to share in savings from reduced hospitalizations associated with physician-guided care management in the office setting.
• It should allow for additional payments for achieving measurable and continuous quality improvements.

As David Harlow said in his intro to his excellent interview with Paul Grundy, MD:

"The Patient-Centered Medical Home model - described more fully in materials from the Patient-Centered Primary Care Collaborative, and TransforMED, an affiliate of the American Academy of Family Physicians - relies on a shift in physician compensation from a fee-for-service focus to a patient management focus; from an episodic focus to comprehensive, relationship-based care. It’s been implemented in over 100 pilots around the country. Denmark learned about the model here in the U.S. decades ago and have implemented it fully across the country’s health care system, shuttering most of the acute care hospitals in the country in the process. Pilots in the U.S. include Geisinger’s, which Grundy says has been remarkably successful, yielding an ROI of over 250%, including a 12% reduction in ER utilization, a 20% reduction in hospitalization, ans a 48% reduction in rehospitalization.
Technology is an important part of these efforts and savings. Even given the potential high cost of technological solutions and Health 2.0 tools, the costs pale in comparison to the $1 million-a-bed cost of hospital construction, let alone hospital staffing and other operating costs."

I agree completely and recommend that you check out the entire interview. We are moving into a new paradigm in the art of medicine. It includes a technologically advanced, patient centered approach that will transform the way we care for each other.


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Transparency With Patient Data

I was disturbed to see some of the comments in the recent story on NPR "Doctors Don't Agree on Letting Patients See Notes." The idea that patients should not ordinarily be allowed to see their own chart notes is anathema to me. When Dr Thane says "We may not as accurately describe the mood of the patient, the tenor of the encounter, for fear that we may get someone perhaps already a little angry during the encounter — more so after they log on and read the note that I just finished," betrays a possible unprofessional documentation in the note. Certainly any provider had better be prepared for the chart to be read by the patient, unless there is compelling legal reason not to allow it (such as mental incapacity etc.)

We have for many years allowed patients to not only read their chart, but make their own notes as well. This is core to the Planetree patient-centered philosophy of care.

"The Planetree philosophy stresses that one of the most valuable learning resources available was the patient’s own medical chart. Patients were encouraged to read their charts daily, ask questions and discuss findings, and participate in the decisions affecting their care. Patients were also encouraged to keep written records of their experiences and observations in Patient Progress Notes, which became a permanent part of their medical chart if they so desired."

Putting Patients First

by Susan Frampton, Ph.D. and Patrick Charmel

I am glad to know that this idea is finally gaining traction and hope that those who are afraid of this philosophy will rethink their position. I can assure Dr. Tom Delbanco, of Harvard Medical School, that once you open some daylight into patient's charts there is no going back.

Remember when Elaine needed to see her chart on Seinfeld: