Are You an Empowered Patient? – The ePatient Movement

Some people find it hard to feel like an empowered patient within the healthcare system. Information about your health can feel overwhelming, and it can be difficult to communicate with your doctor or healthcare team. Don’t fret. It’s possible to navigate your healthcare system, make more informed decisions, and generally become more empowered as a patient through the ePatient movement.  

Patient empowerment involves becoming more proactive, informed, and invested in your own health, so as to make better healthcare decisions. Undergoing a treatment plan with your healthcare providers should always feel like a partnership, not a mysterious process where you don’t understand decisions being made for you. 

An e-patient, coined by Dr. Tom Ferguson, is a term to describe individuals who are equipped, enabled, empowered, and engaged in their health and healthcare decisions. He predicted a future in which patients would be recognized as a valuable new type of resource, managing most of their own care, providing care for others, and participating fully in shared decision-making, patient-initiated research, and self-managed care. We can see this now in the many online resources available to patients now. 

Since the advent of the internet, e-patients have become increasingly common. They know what they are looking for and how to find it. Some of them may end up knowing more than their doctor about specific aspects of their condition. As a result, e-patients are driving a healthcare revolution, gathering data on symptoms, finding better treatments, and insisting on better care for themselves while providing other patients with invaluable medical assistance and support. 

Understanding the basics of patient rights, like informed consent, the right to obtain one’s medical records, and the right to a second opinion, is an essential characteristic of an empowered patient. Having access to health information from a wide variety of sources, including books, online resources, educational courses, and social networks, is also important. Access to information is fundamental to patient empowerment, and patients make the best decisions when they are armed with accurate, relevant, and accessible information.

Another essential component of patient empowerment is health literacy. Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Without health literacy skills, patients may find it difficult to navigate the healthcare system. They may also find it difficult to self-manage their own care, leading to poor decision-making. To learn more about health literacy, and how to increase yours, take a look at our Learning Academy videos. 

No one knows their body better than you. If something feels wrong, either before, during, or after treatment, this could be possible. As advanced as modern medicine is, doctors can unfortunately make mistakes in diagnosis, treatment, or testing. The old paternalistic view of healthcare, in which health professionals were seen as the authority of all medical knowledge and wisdom, is gradually giving way to a new evolving paradigm in which patients, caregivers, and social networks are increasingly seen as important sources of real-world health data.

A survey by the National Patient Safety Foundation found that 42% of US adults reported that they or someone they knew had personally experienced a medical error. The Institute of Medicine has estimated the number of hospital deaths due to medical errors at 44,000 to 98,000 annually. Other frequently cited studies have placed the number of deaths as high as 250,000 deaths per year, which would make medical errors the third leading cause of death, behind cancer and cardiovascular disease. Data from European Union member states consistently report medical errors and healthcare-related adverse events occur in 8% to 12% of hospitalizations. Infections associated with healthcare affect an estimated 4.1 million patients, or one in 20 hospital patients, on average every year. Evidence on medical errors shows that 50% to 70.2% of these errors were preventable. 

These are scary statistics. It’s important to note that most accredited healthcare professionals still have more knowledge and expertise than the general public, but they are still human. A century ago, a physician could remember all the medical information required to treat most known medical conditions. There simply wasn’t as much to remember compared to today. Over the past century, medical information has increased exponentially, but the capacity of the human mind to store and process it has not. It is no longer possible for a doctor to remain up to date on every medical condition known to man, let alone new conditions, without extensive research from a wide range of sources. 

It’s becoming increasingly important for patients to have their own patient advocate. A patient advocate can be thought of as a supporter, campaigner, or spokesperson for the patient. They are usually a family member or close friend, but independent professional patient advocates are also growing in number. They share the healthcare providers’ goals of doing what’s best for the patient, but they also see the situation from a more holistic view, a point of view that may not be available to the patient’s doctor. The combined knowledge between a doctor and their patient can complement each other and provide a greater understanding of a particular health condition.

In essence, the patient empowerment movement is about giving patients a voice in their healthcare and the tools to make informed and collaborative decisions with their healthcare providers. Patients are empowered when they are not just passive recipients but rather active participants in their mental and physical health and well-being.

For more videos and resources like this, check out our Learning Academy, or attend our patient advocacy through Zoom workshops for Northern Ireland and Los Angeles. These workshops provide knowledge helpful to anyone in the world.

Our Online Peer to Peer Events include more videos related to this topic.

Written by Emily Linehan.