The Link Between Patient Experience and Affordability: The Potential Power of Patients

By Barbra G. Rabson

(May 2019)

I’ve spent the last two decades of my career dedicated to measuring and improving patient experience and patient engagement and have always believed that listening to patients about their experiences can be our best path to improving our healthcare system. Recently, I’ve had the opportunity to see patient experience and patient engagement through a new lens: as vital tools in trying to fix what may be the most broken piece of the system – out-of-control costs.

Our unaffordable healthcare is a subject of much concern and debate in all corners of our country. Reasonable people disagree on what to do about it. But no one can disagree with one undeniable fact: at 18% of GNP and rising over the past decade, the current cost of healthcare in the US is unsustainable.

In December of last year, MHQP convened a distinguished group of experts from key stakeholder groups in Massachusetts healthcare in a “Roundtable” discussion on how we as a community might improve affordability by enhancing patient engagement and promoting a better understanding of consumers’ perspectives on the issue. The meeting was supported by Robert Wood Johnson Foundation and the Network for Regional Healthcare Improvement (NHRI), which supported similar affordability meetings throughout the country that were hosted by other regional health improvement collaboratives. MHQP’s meeting was unique, however, in that it was the only one solely focused on the role patients can play in improving affordability.

That meeting changed how I view patient experience and patient engagement. Our discussion helped me understand that instead of encouraging patients to engage with the healthcare system to make informed decisions that lead to the right care, at the right time and in the right place – decisions that have an impact on quality and affordability – the system has inherent barriers that routinely prevent patients from engaging in a way that enables them to obtain high value, affordable care. The Roundtable participants confirmed that the most significant of these barriers to engagement are:

• Trust – Healthcare is built on relationships and relationships are built on trust. A trusting relationship between patients and providers improves outcomes and healthy behaviors. The current system makes it challenging for stakeholders to build strong productive relationships with providers.
• Health Literacy – The vast complexities built into our system have made it very difficult for consumers to know how to best navigate the system, comprehend their health benefits eligibility and coverage, find the best value providers in their area, and understand their medical conditions.
• Capacity – System complexity and care fragmentation place an enormous burden on consumer capacity. Many patients are unable to balance competing priorities to make sound and sensible healthcare decisions. Others are limited by lack of energy, time and/or resources to effectively engage with providers or the healthcare system.
• Access – Too often, patients struggle to gain appropriate and reliable access to providers, choice of treatments, generic drugs and information. Many factors can restrict effective entry or use of the system, all of which directly hinder patient engagement.
• Transparency – The information patients need to make effective healthcare decisions is frequently not available in a reliable or easily understood format. This information should include data about cost, quality, efficiency and consumer experience, so as to influence the behavior of patients, providers, payers, and others to achieve better outcomes.

These are the challenges of everyday interactions between patients and providers. They are points of friction that stand between us and more affordable healthcare.  Yet, these issues are often ignored because they are not priorities, and they feel too big to solve. But we must take steps to begin to address these areas if we are serious about  improving affordability – and I believe that starts with acknowledging them as barriers to affordability and then beginning to seek solutions. The good news is these are the same friction points we need to address to improve patient experience overall.

Here’s a rough roadmap for how we might start to better engage patients as instruments of change in making our healthcare system more affordable:

First, we need to find ways to help patients manage and navigate healthcare costs through a deeper understanding and simplification of healthcare benefits, health financial information, and health systems. Patients need better information about costs to inform their choices, and patients turn to their clinicians to make decisions about care. However, clinicians often don’t have the necessary information about costs, and typically don’t have the proper training or time to have these conversations. We all know the healthcare system is extremely complex, but we often blame patients for not being able to navigate the system. To solve this impasse, we must ensure patients and doctors bring the right information into the room at the point of care.

Second, we need to remove barriers to patient/provider engagement and work to promote “co-production” of health. A strong working alliance between a patient and their provider based on communication and trust is foundational for supporting decision-making that leads to optimal care. However, this working alliance is undermined by lack of time, relevant information, and payment incentives. While not all patients value this working alliance, it is a core principle of the primary care model which leads to better patient experiences, and we need to determine if we are willing to adjust incentives in order to preserve and strengthen it.

Third, we need to increase patient access to care by integrating digital and community care into existing healthcare systems without sacrificing the patient/provider relationship. Our model of visit-based care is restrictive and creates access barriers, particularly for underserved populations. The world has changed in the last 10 years and now many people are used to getting most things done in their living room, in their pajamas, and using their cell phones. Yet, our healthcare system has been fairly deaf to patients’ changing priorities about accessing care with regard to convenience and “self-serve” modes (e.g. access to virtual visits). Most of the innovation (and disruption) in healthcare is happening outside of the system – for example, convenient care locations in the community that are transparent about low cost pricing and virtual care for all kinds of conditions. These could threaten primary care and the strong working alliance many of us seek with our PCPs.  We need to have a discussion about what we want our care delivery system (especially primary care) to look like and propose a course of action that would encourage innovation both within and outside of the current delivery system.

Solving the affordability crisis is a lot like solving the global climate crisis – where to begin? I would suggest we start by unleashing the power of the most underutilized resource in the healthcare system: patients.