Monday, August 15, 2005

PATIENT-CENTERED HEALTH CARE; 21st CENTURY MEDICINE Part #2 (of 3 parts) - What is it, cont'd?


In Part #1 of this series of blogs on Patient-Centered Health Care, we discussed Why this approach to health care is needed, and What it is. In this blog, Part #2, we will continue to discuss What Patient-Centered Health Care is. In Part #3, we will describe how you can determine if your health care support team approaches health care in a Patient-Centered approach; you will also be able to identify your roles and responsibilities, and that of your health care support team in a Patient-Centered Health Care approach system.

Consider the following observation about patients who are involved in Patient-Centered Health Care:

An abundance of literature confirms that patients who are more involved in active communications with their doctors, who participate in shared decision-making, and who understand their own responsibilities for managing their health achieve better outcomes and are more satisfied than others.

How many times have we discussed, in various blogs, the same concepts discussed above: “active communications with doctors”; “shared decision-making” (assuming that the patient has taken the time to research and learn about his/her chronic disease); and, “who understand their own responsibilities for managing their health”??

Care that is truly patient-centered considers patients’ cultural traditions, their personal preferences and values, their family situations, and their lifestyles. It makes the patient an integral part of the care team who collaborates with care providers in making clinical decisions. Patient-centered care puts responsibility for important aspects of self-care and monitoring in patients’ hands — along with the tools and support they need to carry out that responsibility.

Patient-centered health care is particularly important for patients who cope daily with a chronic disease. Chronic disease and its manifestations create many predicaments, challenges and fears for patients and families including (but by no means limited to) the following.
1) Decreased functional capacity to continue the things that are meaningful and valuable to them.
2) Loss of independence and control over their lives.
3) Changes in their capacity to continue their roles.
4) Tensions and changes in their familial and social relationships with the threat of abandonment and loneliness when their illness progresses. 5) An increased need for assistance to complete their activities of daily living. This can lead to a fear of being a personal and financial burden to loved ones.
6) Spiritual conflict and loss.
7) Inability/unwillingness to cope with the implications of a life-limiting illness.
8) Difficulty in making decisions about treatment choices.

Ok, we know the need, and agree. Now, how do we, as a society (in America) evolve toward a patient-centered health care model? Patients have more information today about their diseases and treatment options than ever before. But patients have not had tools to help them decide among these various options, and doctors have not had tools to help gauge how acceptable an option might be to a specific patient. As a result, the medical decision made, in hindsight, may not have been the most suitable one.


As we have discussed, America needs the health care systems evolve toward a patient-centered model. Health care has been evolving away from a "disease-centered model" and toward a "patient-centered model." In the older, disease-centered model, physicians make almost all treatment decisions based largely on clinical experience and data from various medical tests. In a patient-centered model, patients become active participants in their own care and receive services designed to focus on their individual needs and preferences, in addition to advice and counsel from health professionals.

As we have discussed in previous blogs, we ALWAYS “start with the end in mind” (advice from Tom Peters) when looking to effect a change. The rest of this blog will discuss patient-centered health care in global, generic, systemic ideas. In Part #3, we get far more specific: What should be the health care team’s roles and responsibilities; what should be the patient’s roles and responsibilities in a patient-centered health care mode.

Patient-Centered Health Care Defined

In general terms, health care is considered patient centered when the processes and culture (attitude and behaviors) of an organization, office, team, or individual practitioner address first and foremost the wants and needs of the patient.

Care that is truly patient-centered considers patients’ cultural traditions, their personal preferences and values, their family situations, and their lifestyles. It makes the patient an integral part of the care team who collaborates with care providers in making clinical decisions. Patient-centered care puts responsibility for important aspects of self-care and monitoring in patients’ hands — along with the tools and support they need to carry out that responsibility.

OK, again, we know generally that we in the United States need and want to transition to a patient-centered health care system. Where are we now? I found the following research results.


Primary Care And Health System Performance: Adults’ Experiences In Five Countries
(Cathy Schoen, Robin Osborn, Phuong Trang Huynh, Michelle Doty, Karen Davis, Kinga Zapert, Jordan Peugh)
(This paper reports on a 2004 survey of primary care experiences among adults in Australia, Canada, New Zealand, the United Kingdom, and the United States.)

In the summary of this report on Adults’ Primary Care Experiences in Five Countries, America was found to have the following outcomes.
Ø Across multiple dimensions of care, the United States stands out for its relatively poor performance.
Ø With the exception of preventive measures, the U.S. primary care system ranked either last or significantly lower than the leaders on almost all dimensions of patient-centered care: access, coordination, and physician-patient experiences.
Ø These findings stand in stark contrast to U.S. spending rates that outstrip those of the rest of the world.

So, in essence, the United States spends more that the rest of the world on health care, is very good with preventative measures, but ranks #5 out of 5 participating countries when it comes to patient-centered health care! Seems that we REALLY have work cut out for us.

In Part #1 blog in this series, we described the 2004 Picker Institute’s Patient-Centered Care Visit Summit’s 12 “audacious goals” or “stretch targets”. If those targets are what we should aspire as a Nation to achieve, how about discussing some process components to get there. Then, in Part #3, we’ll get more specific to a patient and his/her health care team’s roles and responsibilities.

Below, you will find the “10 Simple Rules for the 21st Century Health Care System (a Patient-Centered Health Care System), followed by six essential interactive components of the patient-centered process.

(from” The IOM Report (Institute of Medicine, “Crossing the Quality Chasm”)
1. Care based on continuous healing relationships. Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This rule implies that the health care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the Internet, by telephone, and by other means in addition to face-to-face visits.

2. Care is customized and reflects patient needs, values, and choices. The system of care should be designed to meet the most common types of needs, but have the capability to respond to individual patient choices and preferences.

3. The patient as the source of control for their care. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making.

4. Knowledge and information are freely shared between and among patients, care partners, physicians, and other caregivers. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information.

5. Evidence-based decision making. Patients should receive care based on the best available scientific knowledge. Care should not vary illogically from clinician to clinician or from place to place.

6. Safety is a visible priority. Patients should be safe from injury caused by the care system. Reducing risk and ensuring safety require greater attention to systems that help prevent and mitigate errors.

7. Transparency is the rule in the care of the patient. The health care system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or choosing among alternative treatments. This should include information describing the system's performance on safety, evidence-based practice, and patient satisfaction.

8. Anticipation of needs. The health system should anticipate patient needs, rather than simply reacting to events. Care is provided in a healing environment of comfort, peace and support. All Team Members (health care support team members) are considered as Caregivers. Families and friends of the patient are considered essential parts of the care team.

9. Continuous decrease in waste. The health system should not waste resources or patient time.

10. Cooperation among clinicians is a Priority. Clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care. All Caregivers cooperate with one another through a common focus on the best interests and personal goals of the patient.

Six essential interactive components of the patient-centered process are described below. Each health care organization looking to transition to the patient-centered approach must address these processes.
1. Exploring both the disease and the illness experience:
the traditional approach of history taking, physical examination to produce a differential diagnosis.
Illness: at the same time the physician should respond to cues as to what the patients ideas, feelings and fears are concerning this illness experience and the effect it has on functioning. Knowledge of past illness experiences and the effect of the family on previous illnesses can be useful to gauge the degree of disease the patient is going through.
The physician usually maneuvers back and forth between the doctor/disease and the patient/illness agendas.

2. Understanding the patient as a “whole person”:
What do you the physician know about the patient’s life in terms of development and experiences and how does this illness impinge on it? It may help to answer the question why does the patient have these symptoms now? Previous contacts with the patient over the years can provide the physician with valuable insights into the present problem (a mutual investment plan between doctor and patient!).

3. Finding common ground:
An effective management plan requires cooperation between the physician and patient in the areas of a) the nature and priorities of the problems, b) the goals of treatment, and c) the roles of the doctor and the patient. Finding common ground rather than bargaining or negotiating requires an understanding of the patient’s ideas, fears and expectations regarding the problems.

4. Incorporating prevention and health promotion:
Health promotion, disease prevention and risk reduction issues should always be incorporated into every contact with the patient whenever possible not just at health maintenance visits. An effective patient-centered relationship enhances the patient’s acceptance of suggestions from the physician for appropriate lifestyle modifications. The provision of optimal continuing and comprehensive care requires this approach and should be supported with a record system (i.e., flow sheets for chronic diseases) and office protocols (such as computer reminder systems) that facilitates this philosophy .

5. Enhancing the doctor-patient relationship:
At every visit the physician strives to build an effective long-term relationship with the patient so that the patient sees the benefit of this growing mutual investment plan between the two. It should be noted that different patients need different approaches such as the dependent patient in need of extra support versus the assertive involved patient. The physician should always monitor his/her own feelings regarding the relationship in terms of sharing power and transference/counter transference issues for instance.

6. Being realistic:
Physicians should always manage their time so that they can provide optimal patient care. This requires priority setting, resource management and teamwork. The strategy taken at one consultation may well be tempered by the number of patients still waiting to see the doctor. Physicians should also respect their limits of emotional energy.

Stay Tuned for Part #3: Your and your Health Care Team’s Roles and Responsibilities in establishing and maintaining an effective and efficient Patient-Centered Health Care process.

PATIENT-CENTERED HEALTH CARE: 21ST CENTURY MEDICINE Part #1 (of 3 Parts) – WHY do we need it; WHAT is it?

PATIENT-CENTERED HEALTH CARE: 21ST CENTURY MEDICINE Part #1 (of 3 Parts) – WHY do we need it; WHAT is it?
This blog discusses the WHY and the WHAT of Patient-Centered Health Care. In the next blog, we will continue to discuss the why and what, using additional information. In Part #3 we will discuss HOW both patients and doctors can transition to this 21st Century Medicine concept. Wherever possible, I have copied directly from the current research documents, and will provide footnotes to that source. If you are interested in expanding your knowledge of this topic, I recommend that you seek out the source and read it. If you cannot find it, make a comment to this blog (and/or to Parts #2 and #3) and I’ll get the reference to you.

The research on this subject covers many factors. I have limited the information to that which discusses the patient and the doctor only.

The best way to use this information is to read it through and think about it. Then when you get a chance to review Part #2 of this Patient-Centered Health Care blog, you will find questions that you can ask yourself about whether or not you are participating in patient-centered health care with your doctor.

Less than 10 percent of medical decisions are made with participation of a fully informed patient.[1]

Physicians are being encouraged to involve their patients in decisions about medical tests and procedures. However, many of them have not embraced the concept in day-to-day office practice, according to a study supported in part by the Agency for Healthcare Research and Quality (HS07289). It found that less than 10 percent of medical decisions were actually made with the participation of a fully informed patient (i.e., doctors provided patients with the pros and cons of the test, procedure, or medication regimen; informed them of their options and any side effects; and helped them reach an individualized decision about the right course to take).

[2]An estimated 50% of the health status of the population and the majority of health care costs in America are accounted for by the presence and level of management of chronic illness and the lifestyle behaviors such as smoking, alcohol use and unhealthy diet that often contribute to these chronic conditions. (IFF 2000, Fishman 1997)

Studies show that up to one half of all recommended treatments are not followed by patients (Dimatteo 1994) and that the greatest weaknesses of existing disease management programs for people with chronic conditions are that they do not use modern, patient centered self management and support strategies. (Wagner 1999, Center for the Advancement of Health 2000, Goodall 1992, Sobel 1995) Instead these programs often focus only on providing information and do not address patient understanding and use of this information or the psychosocial and contextual factors in their motivation and ability to do so.

Statistics on patient nonadherence are big. "By and large, the research indicates that at least half the patients who've been given a prescription don't receive the full benefit of the drug because of not taking the drug at all, not taking the right dosage or stopping prematurely," says Debra L. Roter, DrPH, a professor of health policy and management at Johns Hopkins University School of Hygiene and Public Health. The figures for certain chronic diseases are just as scary, according to researchers. Between 40 percent and 50 percent of diabetic patients don't abide by their medication regimens. The comparable figure for hypertensive patients is 40 percent.

One study estimated that roughly 6 percent of hospital admissions -- almost 2 million a year -- could be traced to nonadherence.

A survey commissioned by Upjohn Co., for example, determined that 20 percent of the respondents had failed to have a prescription filled during the preceding 12 months. Of these individuals, 51 percent said they didn't think they needed the medication. Another 21.7 percent said they simply didn't want to take it. Similar findings surfaced in a survey on unfilled prescriptions sponsored by the American Association of Retired Persons (AARP). Twenty-one percent of the respondents thought the medicine wouldn't work. Side effects worried 22 percent. The issue of affordability arose for only 10.5 percent and 14 percent of patients in the Upjohn and AARP surveys, respectively. This suggests that nonadherence arises less from pocketbook issues than from patients' beliefs and attitudes.

Finally, and most shocking to me, when you study the traditional Illness-Centered approach to medical care, you find statistics like the following: A 1984 study of physician-patient interactions showed that a physician will listen to a patient’s concerns for an average of 18 seconds before interrupting.

The following reference is fantastic! It really discusses the need for American Health Care to evolve to Patient-Centered Health Care.

FACCT—The Foundation for Accountability
Patient-centered Care Measures
for the National Health Care Quality Report
(Defining Patient-centered Care)
Christina Bethell, PhD
May 2000
Copyright © 2001 by The Foundation for Accountability

Definition of Patient Centered Care
The preliminary definition of patient centered care set forth by the Institute of Medicine Committee on the National Health Care Quality Report is:

Health care that respects and honors patients’ individual wants, needs, and preferences, and that assures that individual patients’ values guide all decisions.

This definition requires the systematic inquiry about and responsiveness to patients’ needs, wants and preferences at both the clinical and system level. However, it does not fully recognize the importance of the partnership-based style of health care that is the true hallmark of patient centered care. As such, an expanded definition is offered as the basis for the identification of candidate patient centered care quality measures for the National Quality Report on Health Care:

Health care that establishes a working partnership with patients and their families to ensure decisions are made that respect and honor patients’ wants, needs, and preferences and to ensure that patients have the education and support they need to act as a central resource in their own health and/or the health of their family.

Using this definition, a practice of patient centered care will incorporate into each health care encounter explicit communication strategies to elicit, understand and take as relevant, patients’ own understanding of their needs, wants, preferences and values, even if, and perhaps especially if, they run counter to the those of their providers.

When applied to health care for people with an established chronic condition, who are at risk for disease or who experience an acute event such as infection or injury, this definition of patient centered care will require many health care providers to shift to a collaborative model of care whereby they work in partnership with patients and their families in defining health care needs, making health care treatment decisions, selecting and implementing treatments and managing care over time.”

Patient-Centered Care 2015: Scenarios, Vision, Goals and Next Steps

In February 2004, the Picker Institute convened the Patient-Centered Care Vision Summit. A group of 27 key leaders used these scenarios as input to a shared vision for patient-centered care. In using the scenarios, participants observed that what is most likely is not the futures they want.

The vision statement they proposed for a community of individuals is as follows:
Our vision of care is that each of us is in charge of our health. Healthcare providers are there to help us gain the skills and knowledge to enable us to take charge. Each of us gets the care we need, not less and not more. Our care is efficient and respectful of the value of our time. It integrates ethics and compassion with science. Each of us learns from an early age to be healthy throughout our lives. When we are sick, our care reduces fear and aids healing. When we live with chronic disease, our care and our own health practices bring quality to life. Our care at the end of life honors our values. Our caregivers treat us with respect even if we do not know what they know or do not come from the same background.

The Summit then developed “audacious goals” or “stretch targets”. These twelve provide significant opportunities for making patient-centered care the norm and the standard of care. These audacious goals are as follows.

1. Patients Share in Decision Making. By 2015, at least 50 percent of patients will participate in shared decision-making processes that lead to a measurable
improvement in decision quality. We will have developed, implemented, and responded to an array of measures of “concordance” between healthcare interventions and what people value, first as individuals and then as communities.
2. Enable Patients to Direct Their Care. By 2010, 80 percent of patients and families believe they have the knowledge, supports and confidence necessary to direct their own health and healthcare.
3. Patients Use Performance Data to Choose Supportive Providers. By 2010, patients will be able to choose their healthcare providers based on comparative performance data that shows how well providers support the patients and their family’s role in care.
4. Measure and Reward Providers for Achieving Patient Empowerment. By 2010, health professionals and healthcare facilities will be rewarded according to their patients’ sense of empowerment and self-efficacy, which will be measured routinely.
5. Make Patient Perspective a Priority in Policy and Planning. By 2010, all policy and planning decisions will consider patient perspective first. Patients and/or their families will be present and actively participate in all decision-making bodies.
6. Adopt (Institute of Medicine) IOM’s Simple Rules for Healthcare. By 2015, access, quality and safety will be the organizing principle of every community’s healthcare. Communities nationwide will implement IOM’s Simple Rules for the 21st Century Healthcare System in every organization, institution and care setting.
7. Provide Access to Patient-Centered Care Information and Care. By 2015, everyone will have information and access to patient-centered healthcare and 50 percent will receive their care through a Picker patient-centered care practice.
8. Include Patient-Centered-Care Tenets in Licensing Requirements. By 2015, every health professional licensed to practice in the U.S. is competent, agrees with the major tenets of patient-centered care, and is honest in compliance with standards agreed to between the public and the health profession. Healthcare professionals who cannot or will not comply are removed and no longer practice.
9. Train Healthcare Professionals to Support Patients. By 2010, all healthcare professionals will receive training in how to support patients and enable them to play an active role in their care.
10. Promote Joint Contracting for Care and Prevention in Diabetes. By 2015, all patients with Type 2 Diabetes will “contract” or “sign” a joint care and prevention agreement with their caregivers. (Disabilitykey note: we’d like to see this “contract” apply to all chronic illnesses, to be an agreement between all Chronic Illness Self-Managers and their caregivers.)
11. Provide Healthy Living Skills Education. By 2015, all school-age children will receive education to enhance lifelong skills for living a healthy life.
12. Anticipate Late Life Care Needs. By 2015, education will be available to everyone 50 years and older on realistic scenarios regarding health, long-term care, and the end of life of life through videos, CDs and interactive media.

This next reference from the Johns Hopkins School of Medicine provides us with a great comparison of the “traditional” illness (pathology) focused health care as compared to the desired patient centered (they call it “Health Enhancement”) focused health care. (Disabilitykey note: I have paraphrased some of the criteria to make it easier to understand, using words we’ve used before.)

Who is in Charge? Or
Taking Charge!
Stephen T. Wegener, PhD
Department of Physical Medicine and
Johns Hopkins School of Medicine

Illness or Pathology focused Health Care
1) Focused on germ theory.
2) Diagnosis means identifying the pathology involved.
3) Treatment method is treating the deficit (germ).
4) Goal is to return the patient to baseline functioning.
5) Patient is characterized as a passive “victim”.

Contrast that picture to this one.

Patient-Centered (Health Enhancement focused) Health Care
1) Focused on human potential (of the patient).
2) Diagnosis means identifying the patient’s strengths.
3) Treatment method is building on the patient’s strengths.
4) Goal is enhancement of functioning.
5) Patient is a Chronic Disease Self-Manager (Active manager patient).

In otherwords, “Health Enhancement” (as Johns Hopkins calls it) and the Patient-Centered approach to health care really represents part of an evolution in health care that has expanded our focus to:
– Eliminating pathology;
– Functional Status;
– Quality of Life; and
– Enhancement of functioning/well-being.

[1] See "Informed decision making in outpatient practice: Time to get back to basics," by Dr. Braddock, Kelly A. Edwards, M.A., Nicole M. Hasenberg, M.P.H., and others, in the December 22, 1999, Journal of the American Medical Association 282(24), pp. 2313-2320.

[2] Copyright © 2001 by The Foundation for Accountability
[3] Copyright © 2001 by The Foundation for Accountability
[4] Copyright © 2004 by the Picker Institute
Permission is granted free of charge to any organization or individual working to advance patient-centered care to use the text of the scenarios, vision statements and audacious goals for education and planning purposes.
Reprint of this material should include the statement, Reprinted with Permission from Patient-Centered Care
2015: Scenarios, Vision, Goals & Next Steps, Copyright © The Picker Institute.
[5] Institute of Medicine’s Simple Rules for the 21st Century Health Care System, “Crossing the Quality Chasm” report. The rules are: Care is based on continuous healing relationships. Care is customized according to patient needs and values. The patient is the source of control. Knowledge is shared and information flows freely. Decision-making is evidence-based. Safety is a system property. Transparency is necessary. Needs are anticipated. Waste is continuously decreased. Cooperation among clinicians is a priority.

[6] John’s Hopkins School of Medicine