Patient Empowerment (PE) has been a buzzword in healthcare and advocacy (I've used it a lot myself!). Yet, on a daily basis, I meet people who have no idea how to get control/power over their healthcare. It's frustrating to me that many patients and caregivers still seem to accept the notion that patients should simply follow doctor's orders (despite the fact they pay so much for it as a consumer). Here is a question that led me to write this piece: Is the concept (or word) of PE actually helping patients to get empowered?
The Context of Patient Empowerment
Abundant evidence suggests PE (and similar concepts, which I will get to below) enables the patient to be an active member of the healthcare team, improves safety, and reduces overall healthcare costs1-2. However, at the patient level, the concept doesn't seem to live up to its potential. First, there are so many other words (e.g., participation, involvement, engagement, compliance, enablement, activation) besides empowerment in use to mean some level of patient involvement in their care. Worse, the ways different people and groups use these words and their definitions vary greatly. This situation makes both patients and providers confused and ambivalent about the concept.
It's been said that “patients are the most underused resource in healthcare3.” Many would agree that the situation has not improved since the 1970s, the time of this quote. However, what makes it urgent now is that our healthcare has become exponentially costly compared to the 70s. "On a per capita basis, health spending has increased in the last five decades, from $353 per person in 1970 to $12,914 in 2021.4" We can no longer afford to underutilize our largest resource in healthcare, can we?
How Have We Defined Patient Empowerment?
If you Google the word PE today, you will get over a million hits, and the World Health Organization (WHO)'s entry appears on top. In 2009, WHO defined PE as " a process through which people gain greater control over decisions and actions affecting their own health,"5 which has been cited by countless organizations.
However, in my opinion, the definition became murkier and even too restrictive when WHO goes on to apply 'four components' of PE into the definition (1. understanding of his/her role, 2. sufficient knowledge, 3. skills, 4. facilitating environment): “a process in which patients understand their role, are given the knowledge and skills by their health-care provider to perform a task in an environment that recognizes community and cultural differences and encourages patient participation.5
Here are a couple of thoughts that led me to the above conclusion: 1) they didn't explain who would decide the "patient's role" and how that process might unfold, and 2) the assumption that the knowledge and skills are always given to the patient by the provider is not empowering.
In addition, WHO ushered in the current problem of multiple terminologies by suggesting that instead of "empowerment," a less "emotionally charged" term, such as "participation," may be substituted depending on the organizations and cultures.
Since then, a plethora of terminologies have been used to express similar concepts among providers, researchers, industries, and patients. (If you'd like to see actual examples by various types of authors, click here.)
The Current State of PE and the Challenges
The confusion about PE is real.
Providers seem to be sticking to the WHO's basic definition but add some updated spin (e.g., the cardiologist in the example).6 The research community acknowledges the problem of multiple terminologies and attempts to find the relationships among those terminologies or build a concept map.7-8 While it's serious hard work, I'm afraid this doesn’t provide much real-life value to patients and providers. 'Real-life empowered patients' offer interesting insights and can inspire other patients.9 However, the patient population is diverse, with different opinions. My only concern is that an opinion such as the 'Patient Raising' patient/advocate's (e.g., become an expert on your diagnosis) may make many patients feel PE is out of reach for them.
However, the healthcare industry's communication is what I found the most troubling. These companies make a profit by selling 'solutions' to providers or healthcare institutions. In other words, we can argue they'd want more problems in healthcare so they can sell more products! If you see my two examples (they happen to be at the top of my current Google search, but many others would have similar content), neither provides a definition of PE. They instead describe PE and other positive attributes of patients in a convoluted fashion and how their product would help the patients with multiple pages of explanation (pitches).10-11
On top of that, because AI and other advanced technology are spreading these days, patients and providers could be fooled into believing they must use certain technology to be 'empowered!'
Why is PE critical for patients and the healthcare system NOW?
Let’s think about the big picture.
In our modern, complex, fragmented healthcare landscape, no doctor can make the best decision for a patient without active involvement by the patient.
Coordination among specialists and other healthcare professionals is severely lacking. The providers also have less time with patients and are more burned out than ever, putting patients at potentially serious risks.
Since the pandemic, nurses and other healthcare professionals have been leaving the field in drones, making most facilities severely short-staffed. Even before this happened, medical errors had already been reported as the third cause of death in the US. Patients simply cannot afford to leave everything to healthcare providers!
Last, but not least, our healthcare costs can go substantially higher when patients are left out, and various entities get to decide what services they can provide to them. A tremendous amount of waste and suffering can happen when patients receive little value from their care.
In short, the stakes for patients, providers, and society are enormous unless patients finally become a valuable resource and a partner in their healthcare. Empowered patients could always help their doctors, but now is the time our struggling system desperately needs them!
Can We Focus on 'Characteristics' for an Empowered Patient?
Instead of continuing to use various words to mean similar things, I hope we can use "empowerment" as default because that word signifies the power that patients potentially have in their healthcare, compared to the other words. Perhaps more importantly, I believe that a clear vision (characteristics) that patients can aim for, should they desire, will guide the patient as well as the provider toward the vision.
I believe most providers would appreciate their patients wishing to take an active role and be a partner in the care team. A clear shared vision will help them work together as the patient gains the skills and knowledge to become an empowered patient.
Proposed Characteristics of An Empowered Patient
Based on the tenet of the WHO's basic definition, "control over decisions and actions affecting their own health," blended with my observations as a nurse and professional patient advocate, I arrived at the following simple characteristics of an empowered patient:
1. Mindset (a must-have)
You realize you are the ultimate decision-maker in your care, and no doctor can take responsibility. This can change the locus of control (patient activation), which can lead to self-efficacy (developing coping skills).
2. Health Literacy OR Resources (At least one of three)
1) You have enough healthcare knowledge (about your condition, treatment options, etc.), or
2) You (don’t have enough knowledge but) know HOW to obtain the information you need and understand it, or
3) You know WHO to turn to for the information you need, and explain that to you.
3. Communication Skills to Work with Providers (Either one)
1) You respect the provider's expertise and point of view, and you're able to ask questions and express your wishes as the ultimate decision-maker (after learning the facts), or
2) You bring someone who can help you do this with you.
An optional but highly desirable characteristic
You are willing to take action to improve your health and prepare for the next step/future events.
If you'd like to see more explanations about these characteristics, click here (Go to the lower half of the page. )
Given all the burdens that our healthcare system imposes on the patients, I strongly advocate that they do not need to possess all the characteristics to be considered 'empowered.' Patients should have options to outsource #2 and #3, depending on their wishes and circumstances. Their resource can be a wonderful doctor, devoted family/friend, or professional advocate. I hope this list provides realistic and helpful expectations for the patients and the providers.
Empowered patients are key to improving healthcare quality, patient safety, and cost reduction. A PE concept must give patients a clear target so that patients can become valuable partners and resources in the healthcare system to their desired full extent. This blog proposed three required and one optional characteristics of an empowered patient. Independent advocates can play a significant role in helping patients become empowered and enjoy better healthcare.
If you'd like to get involved with this exciting process or learn more about it, reach out to us.
1. Green, et al. 2015. When patient activation levels change, health outcomes and costs change, too. https://pubmed.ncbi.nlm.nih.gov/25732493/
2. Krist et al. 2020. Engaging patients in decision-making and behavior change to promote prevention. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6996004/
3. DeBronkart & Sands, 2020. Warner Slack: “Patients are the most underused resource”
4. Telesford et al., 2023. How has U.S. spending on healthcare changed over time? https://www.healthsystemtracker.org/chart-collection/u-s-spending-healthcare-changed-time/#Total%20national%20health%20expenditures,%20US%20$%20per%20capita,%201970-2021
5. WHO, 2009. Patient empowerment and health care. In WHO Guidelines on Hand Hygiene in Health Care: First Global Patient Safety Challenge Clean Care Is Safer Care. https://www.ncbi.nlm.nih.gov/books/NBK144022/
6. American College of Cardiology, 2019. The patient’s voice | patient empowerment: Through the eyes of doctor and patient
7. Cerezo et al. 2016. Concepts and measures of patient empowerment: a comprehensive review. https://www.scielo.br/j/reeusp/a/6Wq35FprvvvLWTCGDy3QBKD/?lang=en
8. Hickman et al. 2022. All together now – patient engagement, patient empowerment, and associated terms in personal healthcare
9. PatientRising. https://www.patientsrising.org/empowered-patient/
11. Artera. https://artera.io/blog/patient-empowerment/
12. Anderson & Abrahamson, 2016. Your Health Care May Kill You: Medical Errors. https://doi.org/10.3233/978-1-61499-742-9-13