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Patient Empowerment: The Path to Better-Informed Health Decisions?

Patient empowerment. There’s no single, agreed-upon definition of what it is or how to get to it.

But, patient empowerment is generally seen as leading to collaborative, coordinated care. It supports an approach to care that honors the patient’s preferences, values, cultural traditions, and socioeconomic conditions. All of these characteristics are cornerstones of patient-centered healthcare, which is seen as fostering high-quality care for all.

 

What is patient empowerment?

Patient empowerment requires the active participation of patients, providers, and policymakers – Source

 

How you define patient empowerment depends on who you ask. It’s been described as a process, a set of actions, a skill, and a value.

 

A process

The World Health Organization (WHO) defines patient empowerment as a process. Specifically, “a process through which people gain greater control over decisions and actions affecting their health.”

Both the individual and the community play a part in this process, which the WHO says has four requirements:

  • The patient understands their role
  • The patient acquires enough knowledge to be able to engage with their healthcare provider
  • The patient has the skills needed to manage their health
  • The healthcare environment and community facilitate the patient’s health-related activities and efforts

When these requirements are met, a process can take place “in which patients…are given the knowledge and skills by their healthcare provider to perform a task in an environment that recognizes community and cultural differences and encourages patient participation.”

This definition comes across as paternalistic. It keeps the healthcare provider as the driver of the process, “giving” knowledge and skills to the patient who performs the health-related task.

 

A set of actions

The Center for Advancing Health (CFAH), describes patient empowerment as “the actions we (i.e., patients) take to support our health and to benefit from health care.”

In its Engagement Behavior Framework, CFAH identified 42 actions that patients and/or their caregivers must take to maximize the benefit received from their available healthcare.

Organized around ten themes, these actions include:

  • Finding healthcare providers who satisfy the patient’s personal criteria
  • Finding providers who are accepting new patients and the patient’s health insurance
  • Preparing questions in advance of doctor appointments
  • Gathering additional expert opinions before starting a new course of treatment for a serious illness
  • Changing behavior to maximize health and wellbeing
  • Discussing end-of-life wishes and values with healthcare providers, caregivers, and family members
  • Putting advance directives and a power of attorney in place

Here, the patient is the driving force behind the actions taken. The patient’s whole life, not just instances of illness or health concerns, is considered or managed in this empowerment framework.

 

A skill

Emil Chiauzzi, PhD, the principal scientist at Patients Like Me, characterizes patient empowerment as “a finely-tuned skill providers and patients develop together.”

The skill is made up of:

  • Problem solving
  • Communications
  • Ability to seek out resources
  • Understanding of the disease
  • Understanding of the associated treatments

This definition of patient empowerment suggests an active partnership between patients and providers. It calls on providers to make educational resources available and to allot the time needed to work with patients in order to meet their needs. It also calls on patients to become empowered through their own learning and understanding of their health and disease.

 

A value

The Patient Empowerment Network (PEN) articulates a collaborative approach to patient empowerment that focuses on “the value of having patients assert greater control over their health and healthcare.”

PEN identifies seven essential components for patient empowerment:

  • Information
  • Health literacy
  • Digital literacy
  • Self-efficacy
  • Mutual respect
  • Shared decision-making
  • A facilitating environment

PEN points to the rise of technology and apps as being largely responsible for changing the dynamic between patients and providers. These changes are key to the growth in patient empowerment.

 

Empowerment is not the same as engagement

With engagement, patients are no longer the target of actions taken by others – Source

 

The goal of patient empowerment is to have patients make informed decisions and take actions that support their overall health.

Unlike patient engagement, which is primarily aimed at getting patients to be more adherent and compliant, patient empowerment aims to create the conditions needed to help patients follow through on better health decisions they themselves make.

The notion of empowerment comes from the patient being the primary decision-maker, based on their own understanding of their health, their aspirations, and their healthcare provider’s expertise. What it means to be “better” is relative to the patient’s own values and desires for their overall health and quality of life.

 

Patient empowerment supports patient-centered care

Patients who are empowered tend to seek out more than one source of information about their condition. Patients and providers engage in more shared decision-making. And, patients collaborate with their provider to pursue care that aligns with their values, culture, preferences, and socioeconomic conditions.

No longer is the patient the passive recipient of the provider’s expertise and instructions. Nor is the provider the authority making care decisions regardless of the patient’s values and circumstances.

Together, the conditions that make up patient empowerment facilitate the patient-provider collaboration that is at the core of patient-centered care and will lead to higher quality care for all.

 

Who is the empowered patient?

Empowered patients tend to be assertive, making healthcare decisions for themselves – Source

 

Patients Like Me (PLM) surveyed members of their patient research network in an effort to characterize empowered patients.

In terms of behavior, PLM found that empowered patients ask more questions. They seek more detailed explanations about their conditions and related issues. To feel comfortable asking questions of healthcare providers, patients need to feel confident in their level of education and understanding of health and medicine. They also must be confident that their provider will remain available and engaged for as long as it takes to build patient understanding.

PLM also found that not all patient groups across all health conditions demonstrated the same level of empowerment. Patients with conditions that are more easily diagnosed and more visible (like Parkinson’s and Multiple Sclerosis) self-reported a higher level of empowerment than patients with conditions that are more difficult to diagnose or less visible (like chronic fatigue syndrome and fibromyalgia).

One possible explanation for this disparity is that the stigma attached to less visible conditions undermines patients feeling empowered. Patients with stigmatized conditions often find that providers and caregivers doubt or, in some cases, dismiss their reported symptoms and health experiences.

In characterizing the demographics of empowered patients, PLM reported that patients who self-identified as empowered tended to be more educated, with a higher level of insurance, and male. To some degree these results are not surprising since educational achievement, insurance coverage, and male gender are perceived to be social advantages.

 

How can we encourage more patients to become empowered?

Addressing social determinants of health can provide significant leverage to improve health outcomes – Source

 

For the benefits of patient empowerment to be fully realized, empowerment needs to reach beyond the privileged few and those with the most visible illnesses. Engagement tactics alone (like enabling knowledge and encouraging shared decision-making) won’t be effective in spreading empowerment because they don’t reach all patients.

The formula for widespread patient empowerment, and the benefits of patient-centric care that come along with it, lie in addressing social determinants of health. By addressing social determinants, all patients have the opportunity to gain the literacy and skills needed to actively manage their health and make better-informed decisions.

There are nearly thirty widely-accepted social determinants of health. Out of this complex web of factors, three have been identified as creating the most favorable conditions for expanding patient empowerment.

Surprisingly, these three factors go beyond the clinical setting. They are:

  • Making health insurance accessible to all
  • Addressing language barriers in care
  • Addressing basic needs (i.e., food, housing, and financial insecurity)

 

Insurance accessibility

Having health insurance has a direct effect on access to healthcare. Those without insurance are substantially less likely to access healthcare recently or regularly. This often means that those without insurance don’t seek care until they are experiencing a health crisis, making their treatment more complex and expensive.

 

Language and communication barriers

Language barriers undermine communication between patients and providers with serious consequences. Patients with limited English proficiency are twice as likely to experience adverse medical consequences as English-speakers.

English proficiency is not the only barrier that must be addressed. People with hearing impairments or deafness also need interpreters. And disparities between patients’ and providers’ level of health literacy can also get in the way of understanding and communication needed to get to better-informed health decisions.

 

Addressing basic needs

It’s widely-accepted that when people live in poverty or in under-resourced communities, their health suffers, and life expectancy is shortened. Community-wide action is needed to provide people with their basic needs for food, housing, and security.

Additionally, to ensure that basic needs are met across social and economic lines, a “health is in all policies” approach needs to be adopted. Governmental actions and decisions made outside of “purely health” policy will often have an effect on health. Actions and decisions made in one neighborhood can affect others. These effects need to be recognized and consciously managed to build healthy communities for everyone – not just some.

 

Patient empowerment doesn’t happen in a vacuum

Much is made of the concept of patient empowerment. Empowerment is held up as the key to better healthcare decisions and better health. And while the decision-making power rests with the patient, that patient cannot make those decisions in a vacuum. A host of skills, actions, processes, and values are needed to inform patients and their decisions for true empowerment to be realized.

 

In my next article, I’ll discuss how the patient is being transformed into a health consumer as one model for patient empowerment. 

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