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Patient participation, also called shared decision making, is defined as "patient involvement in the decision-making process in matters pertaining to health." Under this operating system, health care providers explain treatments and alternatives to patients to allow for the patient to have the resources to choose the course of action most consistent with their unique personal and cultural preferences. In contrast, the current biomedical care system places physicians in a position of authority with patients playing a passive role in care. Under this paradigm, known as medical paternalism, physicians instruct patients about what to do, and the patients often unquestioningly obey. Relatively recently, however, a general shift has occurred in which patients are more involved in medical decision-making than before. Variations of each method, including medical paternalism and patient participation, may be preferred by different patients.

Shared decision making combines evidence-based medicine with the preferences of patients. In recognition of the fact that many factors influence medical decisions, the basic premise of patient participation emphasizes patient autonomy. Furthermore, the model recognizes that patients have personal values that influence the interpretation of risks and benefits differently from a physician. Frequently, there is more than one correct decision with no clear choice of which option is best. While some decisions may be regarded as correct the physician's point of view, for example, the decision that aligns most with the patient's values, judgments, and opinions may differ. Shared decision making emphasizes the importance of communication in the process of making a decision and the use of decision support interventions is often advocated. For this reason, shared decision making should be contrasted with informed consent, and simple consent.

Many well-renowned health agencies, including the American Cancer Society and the American College of Physicians, recommend a shared decision model in their medical practices.

Components of patient participation

The ecological model of patient participation, proposed by Cegala and Post, includes four main components of patient participation . The first of these is termed information seeking. Assessment for this component includes the number of health-related questions the patient asks, along with the number of times the patient asks for the physician to verify information. Examples of information verifying may include asking a physician to repeat information, or summarizing what the physician said in order to ensure that the patient understood the information. The second facet of patient participation, as proposed by this model, is assertive utterances, which may include making recommendations to physicians, expressing an opinion or preference, or expressing disagreement. Next, the third component of the model is information provision regarding symptoms and medical history with or without prompting from the physician. The final component of patient participation is expressions of concerns, including affective responses such as anxiety, worry, or negative feelings.

Who wants to participate

Although research has shown that 69% of patients prefer to delegate decision making to physicians, there are certain characteristics of patients that influence the extent of involvement. Research shows that female patients who are younger, more educated, with a less severe illness than other patients are more likely to participate in medical decisions. That is, an increase in age leads to a decrease in desire to participate, while level of education increases participation levels. However, other research has offered conflicting evidence for the effect of age on level of participation. One study found that age did not inversely relate to participation levels. In addition, numeracy levels may play an important role in patient participation. Recent research has shown that, in general, low-numeracy individuals in both Germany and the United States prefer to play a more passive role than their high-numeracy counterparts. However, in general, Americans play a more active role in the physician-patient relationship than do Germans. Furthermore, though African American patients report that they participate less in shared decision-making than whites, studies have shown that African American patients desire to participate just as much as their white counterparts and are more likely to report initiating conversation about their health care with their physicians.

Interestingly, individuals who place a higher value on their health are more likely to play a passive role when it comes to medical decision-making than those who placed a lower value on health . Authors Arora and McHorney posit that this finding may be the result of apprehension when it comes to health-related concerns among those who place a high value on health, leading to a tendency to let an expert, rather than themselves, make important medical decisions.

The role of physicians

Physicians, of course, play an important role in the patient participation model. Researchers have developed specific measures to evaluate the effectiveness of a physician-patient relationship. One such measure explores the following three components: physician's general ability to conceptualize both illness and disease in relation to a patient's life; physicians exploring the full context of illness in the patient's life setting (e.g., work, social supports, family) and personal development; physician's ability to reach common ground with the participants in which the treatment goals and management strategies, nature of the problems and priorities, and roles of both the physician and patient are addressed.

Generally, physicians engage in more patient-centered communication when speaking with high participation patients rather than with low participation patients. However, it is important to note that when a patient is seeing a physician of the same race, the patient perceives that physician as involving the patient more so than a physician of a different race.

The benefits of shared decision-making

A randomized controlled trial of patients at very high risk of coronary events found that use of two clinical prediction rules (http://www.chiprehab.com/CVD/) for predicting coronary events along with tailored feedback, may improve cholesterol values. In this trial, patients were also shown how their calculated risk changed over time and improved in response to changes in the patients' lifestyle changes and pharmacotherapy. A cluster randomized controlled trial found that a cardiovascular risk calculator may reduce decisional regret.

A recent study found that individuals who share decision-making are more likely to feel secure and may feel a stronger sense of commitment to recover. Also, research has shown that patient participation leads to higher judgments of the quality of care. Furthermore, patient participation leads to greater self-efficacy in patients, which in turn, leads to better health outcomes. When a patient participates more in the decision-making process, the frequency of self-management behaviors increases, as well. Self-management behaviors fall into three broad categories: health behaviors (e.g., exercise); consumeristic behaviors (e.g., reading the risks about a new treatment); and disease-specific management strategies. In a similar vein, a recent study found that among patients with diabetes, the more an individual remembers information given by a physician, the more the patient participated in self-care behaviors at home.

Disadvantages of patient participation

For a wide variety of reasons, some patients do not find the patient participation model to be the best approach to care. A qualitative study found that barriers to patient participation may include: a patient's desire to avoid participation due to lack of perceived control over the situation, a medical professional's inability to make an emotional connection with the patient, an interaction with an overconfident and overly assertive medical professional, and general structural deficits in care that may undermine opportunities for a patient to exert control over the situation.

For those who do participate in decision-making, however, there are potential disadvantages. As patients take part in the decision process, it is common for physicians to communicate uncertain or unknown evidence about the risks and benefits of a medical decision. Research has shown that the communication of scientific uncertainty may lead to decision dissatisfaction. Furthermore, critics of the patient participation model assert that physicians who do choose not question and challenge the assumptions as part of the medical decision-making do a medical disservice to patients, who are overall less knowledgeable and skilled than the physician.

Using computers to interact with patients

Recently, interactive software or internet websites can help bridge the divide between the physician and the patient. In some studies, Internet-based interventions improve upon usual care whereas in other studies interpersonal interventions are better.

The quality of online decision aids is uncertain. The International Patient Decision Aid Standards (IPDAS) Collaboration is a group of researchers led by professors Annette O'Connor in Canada and Glyn Elwyn in the UK working towards developing an internationally approved set of criteria to determine the quality of patient decision aids. IPDAS have published a set of standards representing the efforts of more than 100 participants from 14 countries around the world.