The Zest for Patient Empowerment

Patient Empowerment (PE) can be considered as an active and self-determining role of patient than a passive recipient of health related services. It encourages the provider–patient relationship to blossom and helps in clearing patients’ doubts, confusion and fears to bring in clarity, relief and assurance.

For the active involvement of the patient’s in own health management they need to be awakened, motivated, educated and enlightened to enable them to exercise their rights. Active patient involvement in the decision-making achieves favourable health outcome. In an empowerment based approach, the focus is not on defining a particular type of behaviour, but on how the behaviour is defined as a goal to be achieved by a particular individual. As a result of their empowerment process, the patients can better self-manage their illness and their lives.

Thus empowerment of the patients will positively help medical uprising of the community by creating an educated, health aware, informed and health conscious mass.

While being concerned about their beneficiaries, medical professionals must focus on patients’ best interest and maximal benefits [1]. Care has to be taken to cater to the needs of less able, less empowered patients who are not able to defend their own interests [2]. The emphasis on patient’s role in medical decision making has also led to physician–patient conflict situations. In the quest to restrain physician dominance, greater patient control has been advocated. This has been questioned because it fails to acknowledge the situation when patients are sick, suffering, searching for security, and the clinical judgments are dependent on treating doctor’s clinical skills. However, such type of practices in which patients are totally passive recipients and dependent on the physician’s decision has been flourishing.

The Patient Empowerment (PE) requires the doctors to come down off their pedestal and the patients to get up off their knees [3]. In the traditional compliance-oriented health-care, patients are passive recipients of medical decisions, prescriptions and interventions, while in the PE oriented approach patients are informed, responsible for their choices and the consequences of their choices [3].

PE dimensions can be either from the point of view of the provider–patient interaction or from the point of view of the patient alone, or both. In provider–patient interaction, the PE is a process of Information, Education and Communication (IEC) in which knowledge, action plan and possible benefits are shared. When seen from the patients’ view point, the PE is a process of positive transformation, with the expected outcome being to gain more power over one’s life [4,5].

The PE helps patients choose the meaningful and realistic goals. To maximize the chance for success, patients must be internally motivated (e.g. “Losing weight is really important to me”) rather than externally motivated (e.g. “My doctor wants me to lose weight”) [6]. Hence, PE based interventions include both - a process, and an outcome component. The process component occurs when the purpose of the intervention is to increase the patient’s capacity to think critically and make autonomous, informed decisions. The outcome component is attained when there is a measurable increase in the patient’s ability to make autonomous, informed decisions.

PE started with the “social action” ideology in the 1960s and the “self-help” perspectives in the 1970s [7]. It put emphasis on the rights and abilities rather than deficits and needs of the individuals and communities [8]. In the 1990s, the Ottawa Charter for Health Promotion [9] made empowerment a key issue in health-promotion, with focus on positive health enhancement rather than only ill-health prevention, mainly through the improvement of social conditions [10]. The concept was later clarified in healthcare [11] and it was realized that many characteristics are associated with PE implementation in health-care settings.

Ancient Indian medical system of Ayurveda bestowed the physician with status equal to God, who could do no wrong. Their advice and treatment given were considered to be divine who were above analytical inquiry and therefore did not undergo any rigorous scientific analysis. With the changing scenario and development of scientific temper, patients started asking questions about their diagnosis, treatment, side-effects and cost-benefit ratios [12]. In India PE still continues to be a neglected area because not many are willing to take a stand in favour of the patients. Although laws have been enacted in the US for PE, in India there is no clear cut strategy on this issue yet. When patient’s seek information from the medical doctors, prescriptions are thrust in patients’ hands to terminate the conversation. The patients are forced to follow health directives dictated by service providers. It needs to be appreciated that patients as consumers have the right to make their own choices and the ability to act on them. In patients who are illiterate and commonly exploited in the name of health.

Most of the medical doctors practicing in India are not trained in communication skills. There were no formal curricula teaching social and philosophical sciences in undergraduate courses. Although over the last decade some medical faculties have tried to improve practical communication skills of their students to satisfactory level [13].

Even though Medical Council of India (MCI), the controlling body for medical education in India, has recommended such training, not many medical colleges are imparting it and there is no monitoring or follow-up of the MCI directives. The medical teachers are often overworked, examining load of patients, and are not able to impart the communication skills to their students. The medical students and young doctors are busy in learning the science of medicine instead of its art. In India, there is an urgent need to focus on patient IEC so that the patients can communicate their symptoms to their doctors in better way.

Worldwide, recently a number of medical schools have experimented with using virtual environments as sites for role-plays [14]. A meta-analysis of controlled studies with virtual patients found that in general there was a positive effect, although the type and extent of effect depended on the outcomes [15].

There is a need for the doctors to teach the patients about the illness, harms and benefits of the therapy and importance of compliance which can be done in just 4-5 minutes [16]. Only then a good and lasting physician patient relationship can thrive.

In India, as out-of-pocket healthcare expenses increase in the absence of a comprehensive, quality and affordable health care system, the empowered patients would increasingly demand to know more of the available treatment choices, and the medicine prescription options.

Right to a healthy life is integral part of the Right to Life. Basic optimal health care is the right of every citizen and it is the responsibility of the State to provide it. The patients have a right to:

Patients should never hesitate to question the attending doctor about any of the above.

A system that protects consumer rights expects reasonable responsibilities in exchange. Patients should treat the doctors and paramedical staff with respect, act as smart healthcare consumers and comply with doctor’s advice, maintain their illness records as instructed and inform their attending doctor if they decide to switch the doctor, hospital, or the treatment.

Due to lack of patient IEC, the uninformed become passive consumers. For the active involvement of the patients they need to be educated and enlightened for their rights. Enlightened patients can understand their own problems better and have idea about the available best interventions with cost and clinical effectiveness. It is the patients, who own their bodies, illness, sufferings, and spend money, hence they should exercise the control over their health matters.

The concept of PE has been lauded as crucial to health care reform. With the growth of the evidence based impact, it provides an indication of healthcare efficacy. There needs to be a fundamental shift in thinking PE from a “nice-to-have” to an agreed, elementary part of health system reform where its impact and value are evidenced. Some salient studies showing the measurement and evaluation approaches which help to systematically operationalise the concept of PE are given below.

Active patient involvement in the decision-making about own treatment achieves favourable health outcome [17]. For more involvement of the patients in decisions about their health, clinicians can engage with their patients and encourage them to fully consider different treatment options, the likely risks and benefits, and help them understand what is the best course of action for them [18]. Decision aids like short documents outlining choices, detailed leaflets, computer programmes and interactive websites that allow for flexibility in its use offer clinicians and patients a structured means by which to focus the consultation to support shared decision making. One of the review of 55 trials mentioned that by utilizing the decision aids, there was an increase in knowledge of patients, more accurate risk perception, greater involvement in decision making and comfort with decisions [19].

The CHWs are usually provided with specific training for their assigned health care activity [20]. In one of the study the CHWs were trained in behaviour-changing communication strategies to educate patients with hypertension and their households. The CHWs delivered messages regarding diet, physical activity, low salt-intake, medication adherence and smoking cessation. In parallel, the patients’ general/family practitioners (GPs) received training on treatment algorithms for the stepped-care management of hypertension, which included pharmacological and nonpharmacological (diet, exercise etc.,) advice, patient consultation guidance and appropriate communication strategies. Three groups of patients were tracked: (a) those receiving CHW education; (b) those receiving GP consultations from trained GPs; and (c) those receiving both CHW education and trained GP consultations. The results showed that those patients who received both CHW and trained GP consultation significantly reduced systolic BP and increased the proportion of adults with controlled BP [21].

Empowered patients lead to rapid progress of healthcare. One such approach initiated in USA is from Patient-Centered Outcomes Research Institute (PCORI), established through 2010 Patient Protection and Affordable Care Act, which helps its people in making informed healthcare decisions to significantly improve healthcare delivery and outcomes [22]. The PCORI ensures that patients and the public have information that they can use to make decisions that reflect their desired health outcomes. This initiative is a key step towards PE in the US, which other countries need to leap frog.

A patient-centered approach based on experiential learning principles is the key of an empowerment based programme [23,24] in which explanations related to a topic are followed by group discussions, practical exercises, and self-reflection. This approach may reinforce the psychosocial skills in patients which are useful for the patient’s daily life, and can be applied to disease and treatment-related issues. Through the reinforcement of skills like ability to identify needs and psychosocial problems, determine personal goal, manage stress and cope with emotions, it can be assured that self-awareness, and sense of autonomy of the patients are expected to be maximized [23,24].

Empowerment is more about ’’what you are’’ than ’’what you do’’. Empowerment process occurs while the patients tell their story and the health-care provider facilitates the understanding [25]. Doctors with expertise in communicating may easily identify the needs of the patient and may also support in promoting the doctor’s effective management of the patient’s health. Some of the important hurdles for good communication are shortage of time, telephone calls and language barriers. One study has shown that the patient satisfaction can be improved by training of doctors to acquire good communication skills [26]. The main problem in the disempowering relationship is discounting experiential knowledge and providing inadequate time and continuity to the patient [27].

On the analysis of research papers, it has been found that self-management and shared decision making were the most important and relevant outcomes of empowerment [28].

On evaluation of patient’s viewpoints on the participation, it was found that some patients did not consider their participation in healthcare decisions as a desirable outcome of their encounter with a healthcare provider [29]. Instead, some patients expressed the desire to delegate the responsibility for decision-making. According to the principle of self determination, it has been argued that those patients, who choose freely to hand over the responsibility, should still be considered empowered [30].

Medicine must be humane to deliver the best health benefits. It certainly needs attitudinal change for both, the providers as well as beneficiaries. The patients who pay for their health, being the end users must feel important, wanted, cared and well looked after. PE being a personal change, is guided by the principle of self-determination and facilitated by health-care providers through patient-centered approach. To empower the patients, we need emphasis on reinforcement of psychosocial skills so that patient can determine personal goal and manage stress so that patient will be able to improve self-awareness, and sense of autonomy. As the patient get empowered they will develop a greater sense of self-efficacy regarding various disease and treatment-related behaviors, and express changes in life priorities and values and eventually patients may have a better management of their illness.

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