In the epatient activist world, there seem to be two schools of thought regarding patients:
- A professional patient is created when someone is diagnosed with a life-changing disease, whether acute or chronic, that has the power to present enormous challenges and struggles. This patient may suddenly need to learn a lot of information and turns to other, more experienced patients (and healthcare professionals) for guidance, support, and advice.
In 2014, I had 65 individual encounters with healthcare professionals according to insurance claims; I would be a prime example of a ‘professional patient.’
- Everybody is a patient. At some point in your life, you will be prescribed medication, maybe an antibiotic or acne cream, which when used as prescribed will result in improved health or quality of life. This person may or may not identify as a ‘patient’ and probably goes about their daily life not giving the business of medicine much thought.
Medical research has led to enormous advances in medical understanding and important life-changing treatments during the past century. How we as patients, and as a society, respond to these advancements is interesting.
Patients’ treatment behaviors often focus around:
Compliance, taking their medications exactly as prescribed in a manner which is based on the results of carefully conducted clinical trials and regulatory approval. This type of patient is actually quite rare as it can be difficult to follow directions ALL of the time.
Complacency, taking their medication (or not) when it seems to fit their schedule or lifestyle. These patients may not intentionally be non-compliant. Maybe they don’t understand how medications need to be taken to achieve the best possible outcomes, or maybe they choose to alter how they use medications and venture away from the ‘as directed’ instructions, or maybe they have many more non-health-related challenges to juggle and are simply doing the best they can.
Condemnation, rarely taking their medications as prescribed. Perhaps this type of patient believes that all medicines are poison, or actively chooses not to take medication due to negative side-effects, perceived lack of efficacy, or for other unknown reasons. Maybe this patient simply doesn’t understand how they are supposed to use medications and would benefit from better education.
In a recent TEDxTalk in Basel, Switzerland, Silja Chouquet, a healthcare consultant and personal friend of mine, discussed the complexity of prescribed medications, why people don’t take their medication, and what we should do about it. Silja is passionate about the role that healthcare companies, including pharma, can play in moving beyond the pill to helping patients become more ‘compliant’ or better yet, empowered.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.