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Becoming an Expert Patient: Why you may be closer than you think

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A patient is a person who is receiving the services of a healthcare provider. Alright…but “Expert patient”? Who, or what is that?

An acute illness such as malaria is relatively easy to bear because a short course of treatment usually leads to recovery. In contrast, receiving a diagnosis of a chronic (long-term) disease such as hypertension or diabetes is harder to swallow because doctors typically recommend treatments that require major lifestyle changes to be made and sustained, often for life. Persons receiving care for long-term health disorders benefit the most from becoming expert patients.

Current medical evidence affirms that while genes inherited from parents contribute to the development of chronic diseases, at the root of many of such diseases (including heart disease, cancer, and kidney disease) are body system dysfunctions fuelled by poor choices such as tobacco smoking, excessive salt intake, alcohol abuse, and inadequate physical activity. Successful adjustment of lifestyle choices requires “patient engagement”- an active process defined by sustained participation in one’s own knowledge upgrade and behaviour change to achieve health-related goals. When under pressure to change their lifestyle, some patients react by finding self-convincing excuses to assume a “resigned-to-my-fate” attitude, while some others respond by focusing on getting on with whatever needs to be done.

Patients who are engaged in their own care usually exhibit some of the following traits-

  • They generally accept their diagnosis as a self-improvement challenge, and not as a catastrophe rooted in causes beyond reasonable control.
  • They are motivated to downplay apparent disadvantages, and to explore ways to mitigate problems imposed by their disease or social environment
  • They take initiative for becoming well-informed about their disease and the interplay between their health issues and other aspects of their lives.
  • They perceive themselves as partners in the health decision-making process, and therefore seek to develop meaningful relationships with their healthcare providers, and to have open-minded discussions about how they would prefer to be managed. They do not self-medicate.
  • They adapt self-care and behaviour change routines to their situation, and embrace self-monitoring opportunities (or devices) for better individualization of their care.
  • Rather than hide or publicly dissociate themselves from their health status, they muster courage to reach out to other patients experiencing similar health challenges.

Consider a real-life scenario: Ngo agreed with her doctor that she needed to lose weight to bring her elevated blood pressure under control. But she wondered how anyone could expect her to pull this off when her job involved spending several weeks at a stretch on stressful off-shore duty with calorie-rich food served up at every meal time by the central kitchen staff. Ngo’s fiancé suggested that she could organise other overweight co-workers within her sphere of influence to sign a menu review petition for her employers to consider, but Ngo wanted no part in that kind of “attention-seeking activism”. She huffed that most people in her family are overweight and hypertensive, but still okay!

Far from being self-important, know-it-all health crusaders, engaged (or expert) patients tend to be lifelong learners who are not afraid to look for honest answers to their own questions. It is in the context of their progressive mastery over the practical workings of their own health that they become expert patients.

An expert patient then is an engaged patient who is living enthusiastically with a long-term health condition, while acquiring knowledge, skills and empowerment to actively process relevant information, decide how that information fits into his/her life, and act on those decisions to achieve health goals in partnership with a healthcare provider.

With time, expert patients usually become admired by the people they interact with in the course of their health-related activities. Their “can do” approach to a life-long health challenge tends to attract requests for advice from other patients. Not surprisingly, patient groups such as the Diabetes Association typically elect expert patients to serve in their key committees and other leadership roles. Health workers and health advocacy organizations likewise seek out and invite expert patients to contribute to their educational and advocacy programs. Expert patients are also solicited for their insight into the design and implementation of disease-specific research.

Back to our real-life scenario of Ngo: After one of her co-workers (Rosemary) slumped at work and nearly died of a stroke, Ngo shook off her complacency and took her blood pressure and body weight issues more seriously. She brought Rosemary on board, and over time, this led them to scrutinize the meals served by their company. They made an astonishing discovery of very high sodium (salt) content in most of the meals prepared in the central kitchen. Ngo remembered having heard about the associations between high salt intake and water retention leading to unnecessary weight gain, and severe hypertension. When they presented to their workplace management the evidence of dietary excesses that workers had been consistently exposed to during shift duty, her employers scrambled to make amends. Today, Ngo is no longer an overweight and clueless patient, but a vocal advocate for dietary control in the management of elevated blood pressure, particularly where extended or irregular shift workers (who are dependent on others to prepare their meals) are concerned.

Becoming an expert patient should be the goal of every person receiving medical care for a chronic medical disorder. Even those with a victim mentality can learn to adopt the right attitude and accept responsibility for gradually changing the narrative of their treatment experience through active engagement in their own care.

If the prospect of turning the burden of long-term illness into an exciting journey of discovery and mastery appeals to you, then you may actually be closer than you think to becoming an expert in your own wellness!

Contributed by a CH writer.

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