Patient Empowerment vs. Patient Engagement: Why Healthcare is Missing the Mark

Let’s talk about two of the most overused buzzwords in healthcare: “patient empowerment” and “patient engagement.” These terms are tossed around boardrooms and strategy decks as if they're the holy grail of healthcare innovation. And yet, most organizations fail to grasp what they actually mean, or worse, how to deliver on them.

Sure, on paper, patient engagement sounds like the ultimate goal. But in reality? It's often just a euphemism for "let's build a portal patients will hate logging into." Empowerment, meanwhile, is what healthcare companies claim to provide while designing sterile, transactional systems that treat patients like widgets in a factory. Nothing about these experiences is transformational, or frankly, engaging.

And at the heart of it all? A system that prioritizes insurance companies over the very people it’s supposed to serve. What if we flipped that script? What if employers, those with the most to gain from a healthy workforce, took on the role of payors, while insurance companies played a supporting role?

Before moving forward, I want to give a big shoutout to a colleague of mine, Brent Renkema, for inspiring this article and contributing some sharp insights to help shape the conversation. Our back-and-forth on engagement, empowerment and systems dynamics has been invaluable and it’s time to bring those ideas to life.

TL;DR

The Data:

  • Healthcare spending: In 2024 employers are poised to spend over $15,000 per employee annually on healthcare, yet patient outcomes often fall short due to systemic misalignments.

  • Bias in care: For decades, healthcare research excluded women and underrepresented populations, leading to misdiagnoses and gaps in care (e.g., heart attack symptoms in women).

  • Economic burden: Preventable conditions contribute to trillions in healthcare disparities annually in the U.S.

Key Examples:

  • The 2x2 Matrix: Patients fall into four quadrants based on engagement and empowerment, with most stuck in disempowered or disengaged states due to systemic barriers like opaque costs and lack of autonomy.

  • Employer-led health ecosystems: By taking on the payor role, employers could align incentives, promote preventive care and deliver personalized, engaging healthcare experiences.

  • AI’s potential: Thoughtful AI design and diverse training data can eliminate bias, making healthcare more equitable and empowering.

Melissa Insights:

“Empowerment without engagement is a dead end. Patients deserve systems that give them autonomy while inspiring trust and participation. It’s time to move healthcare from transactional to transformational.”

The Takeaway/Action:

To close the gap between patient engagement and empowerment, we must:

  • Redesign healthcare to prioritize preventive care, health literacy and lifestyle changes.

  • Shift the payor role to employers to align health outcomes with real incentives.

  • Leverage AI responsibly to eliminate bias and build equitable systems.

Let’s stop throwing buzzwords around and start building systems that empower patients and drive true transformation.

Engagement vs. Empowerment: Why Healthcare Keeps Missing the Mark

Let’s get real: engagement and empowerment aren’t the same thing, even though they often get lumped together like two sides of the same coin. At first glance, they might look related, but dig deeper, and you’ll see they address entirely different needs.

  • Engagement is about actions. It’s the patient logging into their portal, completing a post-visit survey, or (if you’re lucky) signing up for a wellness program. Necessary? Sure. Transformative? Not even close.

  • Empowerment, on the other hand, runs deeper. It’s about autonomy and personal agency, giving patients the tools, knowledge and confidence to make informed decisions about their health. True empowerment shifts the balance of power from the provider to the patient, something most healthcare systems aren’t equipped (or willing) to do.

Brent, who has a specialization in studying workplace performance, shared comparative insights during our discussion about healthcare systems. From our back-and-forth, a clear parallel emerged:

  • Engaged employees are “all in,” willing to go the extra mile and give discretionary effort to help the organization succeed.

  • Empowered employees are those provided with the authority and tools they need to make decisions and take meaningful action.

This distinction is key to understanding how engagement and empowerment work together, both in the workplace and in healthcare.

  • Engaged Patients: These are the folks showing up, following care plans, and asking the right questions. They’re advocating for themselves, their partners, their families and making long-term health “investments.” But here’s the rub: patients can only engage as far as the system lets them. And let’s be honest, the system often creates barriers that actively discourage engagement:

    • Confusing, convoluted systems.

    • A “God complex” where providers assume patients can’t make their own decisions.

    • Zero transparency around costs and quality.

    • Disconnected care and conflicting recommendations.

  • Empowered Patients: This is where the system needs to level up. Empowerment means giving patients the autonomy to make decisions, along with the tools and education to do it effectively. But unlike in the workplace, where managers empower employees to act as agents, the healthcare system doesn’t really empower patients, it holds control over their data, decisions, and access while pretending to hand them the keys.

Think about it: how do EMRs/EHRs and digital health tools treat your data? Is it truly your data, or theirs? Can they share it without your permission? And when you need your data shared, is the process seamless? Anyone who’s set foot in a doctor’s office in the last 20 years knows that it’s not. This dynamic makes it clear that patient empowerment is far from reality, despite how often it’s hyped up in advertising buzzwords.

Here’s another layer: you can have empowerment without engagement, but it’s a dead end. Empowering someone who’s disengaged accomplishes nothing. A patient might have access to tools and autonomy but feel disconnected because they don’t trust the system or see the value in participating. It’s the same with employees…empowered workers won’t go the extra mile if they’re disengaged from the company’s mission.

If we want to make real progress in healthcare, we need systems that deliver both empowerment and engagement. Give patients autonomy and the tools to take control of their health, but also create experiences that inspire trust, investment and participation. Otherwise, we’re left with meaningless buzzwords that look great on PowerPoint slides but fail to drive any actual change.

It’s time to move from all show, no go to systems that actually work for the people they’re meant to serve. Engagement and empowerment aren’t just trendy terms, they’re the foundation for real transformation. Let’s stop missing the mark.

The Systemic Problem: A Health System Stuck in the Past

You know what is engaged in healthcare? Physician administration. EPIC and other EHRs/EMRs are optimized for doctors, hospitals and billing departments, not patients. The patient side? It’s an afterthought. Clunky portals, confusing workflows and endless checkboxes scream, "We care about compliance, not you." Nothing about them feels empowering, transformational, or even remotely human.  (Go ahead, try to change my mind. You won’t, because you can’t.)

But the real systemic problem runs deeper than outdated technology. It’s a fundamental misalignment of power dynamics and incentives.

  • The healthcare system revolves around insurance companies, whose profit-driven models treat patients as risks to be managed, not individuals to be empowered.

  • Providers operate within the confines of these systems, which limits their ability to act as true patient advocates.

And then there’s the patient-provider relationship itself. Patients empower providers by sharing their personal and familial health data and often delegating decision-making authority. This creates a unique power balance:

  • Patients TRUST providers to make the best decisions for them.

  • Providers ASSUME patients can and will comply with their recommendations.

Here’s where the gap widens: what happens when a patient’s financial or personal realities, their values, hopes, dreams, and vision for life, don’t align with the provider’s assumptions? This disconnect often leads to a breakdown in both engagement and empowerment. Providers act without full context, and patients disengage because they don’t feel seen or understood.

If healthcare systems don’t address these misaligned dynamics, they will continue to fail at creating the engaged and empowered partnerships that drive better outcomes. The tools and resources are there, but without a redesign of incentives, relationships, and patient-centered systems, the healthcare system will remain stuck in the past.

A New Payor Model: Empowering Employers

Here’s where things get interesting: what if we shifted the payor role from insurance companies to employers? Employers already spend over $12,000 per employee annually on healthcare (in 2024 that number is looking more like $15,000). Instead of funneling that money into the black hole of insurance companies, employers could invest directly in their employees’ health.

Here’s how this reimagination of the payor model could work:

  • Direct Funding for Basic Care: Employers pool resources into a fund to cover preventive and primary care for employees. Catastrophic, highly specialized, or continuous care could be handled through reinsurance or public-private partnerships. This includes mental health and wellness.

  • Incentivizing Healthy Lifestyles: Employers, who benefit directly from a healthier workforce, would have every reason to promote wellness programs, nutrition counseling, gym memberships, and mental health support. Add in tangible incentives like tax breaks for both companies and employees who hit health milestones: now you’re building a system where everyone wins.

  • Better Alignment of Incentives: Unlike insurance companies, employers don’t profit from inflated healthcare costs. Their focus would naturally shift toward improving outcomes and reducing long-term expenses because healthy employees = lower costs and higher productivity.

  • A Seamless Employee Experience: Imagine skipping the administrative headaches of dealing with insurance middlemen. In an employer-driven, vertically integrated system, employees could access care more easily, with fewer barriers and faster solutions. Think of it as a streamlined Kaiser Permanente, but driven by employers.

The Challenges and Opportunities

This model isn’t without its hurdles. Catastrophic conditions, rare diseases and long-term specialized care would still require a broader safety net. But here’s the thing: with thoughtful planning and collaboration, between employers, government entities, and reinsurance providers, we could redefine how healthcare is delivered and funded in ways that truly empower both employees and patients.

By shifting the role of the payor to employers, we can create a system where incentives align with better health, not bigger bills. Employers would become the driving force behind a healthcare ecosystem that prioritizes prevention, transparency, and patient empowerment. It’s bold, it’s ambitious, and it’s exactly the kind of rethink the system needs.

The 2x2 Matrix: Empowerment vs. Engagement

We’ve mapped what empowerment vs engagement could look like (props to Brent for the inspiration and pushing me to examine this in more detail):

  • Engaged + Empowered: The sweet spot. Patients feel like the ultimate owners of their health, and providers act as engaged consultants. But this quadrant remains rare due to systemic barriers like opaque costs, poor patient education, and lack of autonomy.

  • Engaged + Not Empowered: Patients dutifully follow doctor’s orders without questioning or understanding them. Engagement without empowerment fosters dependency and burnout.

  • Not Engaged + Empowered: Patients with access to tools, data, and autonomy, but who are disengaged due to mistrust or frustration. Empowerment without engagement is wasted potential—tragic and all too common.

  • Not Engaged + Not Empowered: The quadrant of hopelessness. Patients feel powerless and disinterested, and health outcomes reflect it. This is where far too many people in the U.S. healthcare system find themselves today.

Building the Bridge: What Needs to Change

The gap between empowerment and engagement isn’t insurmountable, it’s just that most healthcare systems are stuck in the past. But what if we could apply different types of system and platform thinking to achieve results?

Healthcare Gamification That’s Actually Engaging

The digital health market loves to talk about "habit-forming" and "lifestyle change," but from my experience and deep rabbit hole examination: most products are neither engaging nor sticky. (Sorry, not sorry if I’ve joined your platforms and dipped within the free trial because you haven’t yet found product market fit.) They feel like work: tedious, boring, cumbersome and easy to ignore. What if patient portals worked more like Fitbit or Noom? Gamification doesn’t have to mean cheesy badges. It could be about celebrating small wins, making health tracking genuinely rewarding, or even giving patients bragging rights for hitting goals they can share on social (influencers do it all the time, and we all notice).

That said, gamification has its limits. As Brent and I discussed, this method works best for preventive care, where the goal is to avoid comorbidities caused by unhealthy behaviors. Trying to gamify complex or specialized treatments, like radiation therapy or rare disease management, can feel not only ineffective, but also insensitive. The empathy lens is critical here.

The goal should be to design gamified systems that focus on empowering patients, celebrating progress and fostering long-term health improvements, without trivializing the serious nature of care for those managing complex or genetic conditions. When done thoughtfully, gamification can be more than a buzzword, it can be a meaningful tool for driving better outcomes.

Connecting the Dots: Engagement, Empathy, and Equity
Gamification can drive better engagement when thoughtfully applied, but true transformation requires going deeper. Engagement without empathy, or without addressing systemic barriers like bias, can only go so far. To truly empower patients, we need systems that go beyond surface-level incentives and start addressing the structural challenges holding healthcare back.

This is where personalization at scale enters the picture. By leveraging AI and inclusive data practices, we can build systems that not only engage, but also understand patients as unique individuals. Combining the motivational power of gamification with the precision of personalized care is how we move from transactional experiences to truly transformational outcomes. So what would that look like?

Personalization at Scale: Breaking Down Bias for Better Outcomes

AI can (and should) do more than just triage. Imagine systems that don’t just know a patient’s symptoms but also understand their motivations, pain points, barriers, and unique biology. This level of personalization has the potential to revolutionize healthcare, but there’s one glaring roadblock standing in the way: bias.

Bias in healthcare data has already caused serious gaps in care. Take heart attack symptoms, for example. For years, medical descriptions were based solely on research conducted on men, leading clinicians to assume that women would experience heart attacks in the same way. Hello?! It’s blatantly obvious they don’t. Women frequently present with entirely different symptoms, and for decades, these differences went unrecognized, causing countless women to misdiagnose their own symptoms or delay critical care.

The problem runs deeper than heart attacks. Healthcare data hasn’t always been inclusive, and this lack of diversity impacts everything from diagnosis to treatment outcomes, particularly for women and other underserved populations. While progress is being made, it’s slow, and as Cathy O’Neil warns in Weapons of Math Destruction, biased algorithms don’t just fail people; they actively harm them. In healthcare, this is simply unacceptable.

Biased AI can over-represent certain socioeconomic groups while underestimating the challenges faced by underserved communities. When systems misinterpret or ignore patient diversity, they fail to empower anyone, let alone those most in need of support.

This is also where genetic insights could play a transformative role. Imagine doctors prescribing medications tailored to a patient’s genetic makeup, removing biases based on sex, ethnicity, or other generalized assumptions. The potential to eliminate bias and improve outcomes is immense. But here’s the challenge: current testing methodologies are limited, often constrained by the “scientific method paradigm.” Research frequently “controls” for secondary factors, leading to narrow conclusions, such as testing on European men and assuming the results apply universally.

The solution is clear: we need more inclusive data collection, thoughtful AI design, and a commitment to equity. By incorporating diverse datasets and prioritizing inclusivity, we can build systems that empower patients from all backgrounds. It’s not just about better healthcare; it’s about equitable healthcare that reflects the reality of our diverse population.

Building AI for Equity: Principles for Responsible Innovation

To build AI that empowers rather than excludes, we need to ensure it’s trained with intention and integrity. Here’s how:

  • Diverse and Inclusive Training Data: AI models are only as good as the data they’re fed. Training datasets must reflect the full spectrum of humanity: socioeconomic, demographic, and psychographic diversity included. This means going beyond generic health data and actively sourcing information from underrepresented populations to identify unique health patterns and barriers.

  • Regular Bias Audits: Models should undergo routine audits to detect and address bias. This includes analyzing how algorithms perform across different groups and ensuring no one is systematically disadvantaged by the system.

  • Human Oversight with Equity in Mind: AI should augment, not replace, human judgment. A multidisciplinary team, including healthcare providers, ethicists, and community representatives must oversee AI recommendations to ensure they are equitable and actionable.

  • Personalized, Not Stereotyped, Insights: Tailoring care doesn’t mean pigeonholing patients based on superficial traits like income or age. AI should dig deeper, using psychographic insights to understand what drives individual behavior. For example, instead of assuming someone in a lower income bracket can’t afford preventive care, the system could identify affordable solutions and communicate them effectively.

  • Transparency and Explainability: Patients have the right to know how and why decisions about their health are made. Building explainable AI systems that allow patients and providers to understand the logic behind recommendations fosters trust and accountability.

  • Collaborating with Communities: Engage directly with the populations you’re building for. Co-developing algorithms with input from diverse patient groups ensures the AI is rooted in real-world experiences, not assumptions.

When AI is trained responsibly, its potential goes far beyond static appointment reminders. It becomes dynamic, evolving alongside the patient to deliver tailored health plans that reflect their unique needs, challenges, and aspirations. It doesn’t just engage; it empowers, offering patients the tools and insights they need to take charge of their health in ways that feel personal, achievable, and fair.

Let’s be clear: empowering patients through AI isn’t a nice-to-have, it’s a moral imperative. Bias in AI has already caused harm across industries, from Amazon’s recruitment tool penalizing women to Facebook’s ad-targeting enabling housing discrimination. Healthcare risks similar pitfalls if algorithms trained on non-representative data misdiagnose conditions in underrepresented groups, such as skin diseases in Black patients.

If we don’t confront these challenges head-on, we risk building systems that perpetuate inequities rather than breaking them down. But if we get it right, we can create a healthcare system that evolves from reactive and inequitable to dynamic, personalized, and empowering for everyone.

Preventive Care: The Headliner Healthcare Needs

Let’s make preventive care the star of the show, not just the understudy. (Our current preventive care system also needs to be reimagined, but stay with me here.) Instead of reacting to illness, let’s use engagement as a proactive tool to build healthier habits and reduce long-term healthcare costs. It’s time to focus on the real game-changers:

  • Health Literacy: Equip patients with the knowledge they need to make informed decisions about their health.

  • Lifestyle Changes: Incentivize small, sustainable actions, like better nutrition, mental health or consistent exercise, that lead to long-term health improvements.

  • Early Screenings: Encourage preventive care through tangible financial incentives, like tax breaks for individuals and families who complete annual screenings, engage in wellness programs, or proactively manage chronic conditions.

By putting prevention front and center, we could cut into the trillions of economic burden caused by health disparities, close the gap for underserved populations and create a healthcare system that actually prioritizes keeping people well instead of just treating them when they’re sick. It’s bold, it’s practical, and it’s exactly what the system needs to evolve.

Empowering Employers: A New Role in Healthcare

Employers have a unique opportunity to take the lead in creating health ecosystems that engage employees, not just as workers, but as whole people. By stepping into the payor role, employers could drive personalized, gamified and truly empowering healthcare experiences that prioritize long-term health.

Here’s how:

  • Incentivize Wellness: Offer financial incentives for implementing effective wellness programs and comprehensive preventive care options.

  • Align Health Outcomes with Business Goals: Create systems where healthier employees directly benefit both the workforce and the company’s bottom line.

Again, by aligning incentives with health outcomes, employers can help tackle this economic burden caused by healthcare disparities. The system needs a reset, and empowering employers to lead the charge could be the breakthrough we’ve been waiting for.

From Transactional to Transformational: Redefining Healthcare

Here’s the harsh truth: as long as healthcare remains sterile (emotionally, not just physically, let’s keep the ORs clean) and transactional, we’ll never close the gap between empowerment and engagement. Patients deserve more: more autonomy, more inspiration, and more reasons to take ownership of their health. Clunky portals and tedious tasks aren’t enough. It’s time to stop pretending they are.

By rethinking the role of employers, leveraging technology for personalization, and designing systems that feel human and empowering, we can turn engagement into a true pathway for transformation. The tools are here. The knowledge is here.

What’s missing? The will to act and the mindset to change. It’s time to stop throwing buzzwords around and start building a healthcare system that works for the people it’s supposed to serve. Transformation is possible, we just have to commit.

Sources:

  1. Aon. (2024). Employer health care costs expected to rise 8.5% in 2024. Retrieved from Medical Economics

  2. Journal of Women's Health. (Date unavailable). Mental illness misdiagnoses among women with heart disease symptoms. Retrieved from Daily Telegraph

  3. University of Aberdeen. (Date unavailable). Gender disparities in heart attack treatment. Retrieved from The Times

  4. Wikipedia. (n.d.). Yentl syndrome. Retrieved from Wikipedia