Patient participation

Patient participation, also called shared decision making, is a process in which both the patient and physician contribute to the medical decision-making process. Under this operating system, health care providers explain treatments and alternatives to patients in order to provide the necessary resources for patients to choose the treatment option that most closely aligns with their unique cultural and personal beliefs. In contrast, the current dominant form of medicine, the 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 follow the physicians' advice. Relatively recently, however, a general shift has occurred in which patients are more involved in medical decision-making than before. A recent review of 115 patient participation studies, for example, found that the majority of respondents preferred to participate in medical-decision making in only 50% of studies prior to 2000, while 71% of studies after 2000 found a majority of respondents who wanted to participate. Variations of each method, including medical paternalism and patient participation, may be preferred by different patients.

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.

Patient Autonomy and Informed Consent
In recognition of the fact that many factors influence medical decisions, the basic premise of patient participation emphasizes patient autonomy. 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 option with no clear choice of which option is best; this occurs when the decision at hand is about a preference-sensitive condition. In certain situations, for example, the physician's point of view may differ from the decision that aligns most with the patient's values, judgments, and opinions. For this reason, informed consent is at the core of shared decision making. That is, without fully understanding the advantages and disadvantages of all treatment options, patients cannot engage in making decisions based on their personal values and beliefs.

The Ecological Model
The ecological model of patient participation, proposed by researcher and professor Donald J. Cegala and based on previous research by Richard Street, 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. The third component of the model is information provision of symptoms and medical history with or without prompting from the physician. The final component of patient participation is expressions of concern, including affective responses such as anxiety, worry, or negative feelings. The extent of participation can be determined based on how often a patient displays these four overarching behaviors.

Factors that Predict Participation
There are certain patient characteristics that influence the extent of involvement. Research shows that female patients who are younger, more educated, and who have 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 higher levels of education increase 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. That is, individuals who are not as fluent with numbers and statistics tended to let their physicians make medical decisions without much input from the patients. In general, however, Americans play a more active role in the physician-patient relationship, by performing activities like asking follow-up questions and researching treatment options, than do Germans. Furthermore, research shows that race plays an important role in whether a patient participates. 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. Researchers 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 of patient-centered behavior: 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; physicians' 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.

Previous research has demonstrated that increased patient-centered behavior by physicians leads to greater compliance of patients' at-home medical care, such as taking pills. It is important to note that, generally, physicians engage in more patient-centered communication when speaking with high participation patients rather than with low participation patients. However, when a patient sees a physician of the same race, the patient perceives that physician as involving the patient more so than a physician of a different race.

Patient empowerment
Patient empowerment is the granting of patients to take an active role in the decisions made about his or her own healthcare. Patient empowerment requires a patient to take responsibility for aspects of care such as respectful communications with one's doctors and other providers, patient safety, evidence gathering, smart consumerism (making care cost decisions in the United States), shared decision-making and more.

To ease patients’ empowerment, different countries have made laws and run multiple campaigns to raise awareness of these matters. For example, the French Act of 2 March 2002 aims for a ‘‘health democracy’’ in which patients’ rights and responsibilities are revisited, and which gives patients an opportunity to take control of their health. Similar enactments have been passed in countries such as Croatia, Hungary and the Catalan region. The same year, the UK passed The Penalty Charge for Patients to remind them of their responsibility in healthcare.7 In 2009, British and Australian campaigns were launched to highlight the costs of unhealthy lifestyles and the need for a culture of responsibility.5,25  The European Union took this issue seriously26  and since 2005, has regularly reviewed the question of patients’ rights through various policies with the cooperation of the World Health Organisation.6  Various Medical Associations have also followed the path of patients’ empowerment through different Bill of Rights or Declarations.

Benefits
A recent study found that individuals who participate in shared 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.

Previous research has demonstrated that providing patients with personal coronary risk information may assist patients in improving cholesterol levels. These findings are most likely attributed to an improvement in self-management techniques in response to the personalized feedback from physicians. Additionally, the findings of another study indicate that the use of a cardiovascular risk calculator led to increased patient participation and satisfaction with the treatment decision process and outcome, and reduced decisional regret.

Disadvantages
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. Furthermore, dispositional factors may play an important role in the extent to which a patient feels comfortable with a participating in medical decisions. Individuals who exhibit high trait anxiety, for example, prefer not to participate in medical decision-making.

For those who do participate in decision-making, there are potential disadvantages. As patients take part in the decision process, physicians may communicate uncertain or unknown evidence about the risks and benefits of a decision. The communication of scientific uncertainty may lead to decision dissatisfaction. Critics of the patient participation model assert that physicians who choose not to question and challenge the assumptions of patients do a medical disservice to patients, who are overall less knowledgeable and skilled than the physician. Physicians who encourage patient participation can help the patient make a decision that is aligned with the patients' values and preferences.

Decision Aids
Patient participation increasingly relies on the use of decision aids in assisting the patients in choosing the best treatment option. Patient decision aids, which may include leaflets, video or audio tapes, or interactive media, supplement the patient-physician relationship and assist patients in making medical decisions that most closely aligns with their values and preferences. Recently, interactive software or internet websites have helped bridge the divide between physician and patients. Recent research has shown that the use of decision aids may increase patients' trust in physicians, thereby facilitating the shared decision-making process. The International Patient Decision Aid Standards (IPDAS) Collaboration, a group of researchers led by professors Annette O'Connor in Canada and Glyn Elwyn in England, has published a set of standards, representing the efforts of more than 100 participants from fourteen countries around the world, that will help determine the quality of patient decision aids. The report determined that there are certain components of an aid, such as providing information about options, using patient stories, and disclosing conflicts of interest, that will assist patients and health practitioners to assess the content, development process and effectiveness of decision aids.