Why is it so hard to increase patient engagement in healthcare?

This is the second post in a three-part series on patient engagement. Check out the first post:

Patient Engagement in 2019: Can it Impact Patient Outcomes?

Though recent research indicates patient engagement can move the needle on improving healthcare, there are no easy answers on exactly how to increase engagement with patients beyond addressing their immediate healthcare needs.
What do we know about how to improve the ability of patients to:

  • Execute care plans?
  • Perform specific actions to achieve their healthcare goals?

Plus, where should healthcare professionals focus their efforts to drive more patient engagement?

Let’s start with what the research says.

The NEJM Catalyst Insights Council identified the two most effective patient engagement initiatives:

  1. Have medical practitioners spend more time with patients
  2. Share decision-making powers between practitioners and patients

On the surface, these initiatives may appear relatively simple. As we dig deeper, however, we see complex obstacles both practitioners and patients face that make these initiatives difficult to achieve.

3 Obstacles that Prevent Patients from Engaging in their Healthcare

At HIMSS17, healthcare consultant Janice McCallum discussed the role patients play in patient engagement and the HIT systems that support it:

“My pet peeve is the disconnect between what providers and vendors call patient engagement programs and what patients actually need to become more engaged with their healthcare providers. For starters, patients need to have a voice in their care and they should have full access to data related to their care, including their complete health record. Without fully including patients in their own healthcare decisions, patient engagement programs are nothing more than paternalistic compliance programs.

Indeed, the medical community frequently uses the terms “compliance” or “adherence” in referring to patients: medication compliance or adherence, compliance with medical treatment, patient adherence to recommended treatment regimens, etc.

In some cases, the patient is being considered much like a student in a strict school: are they following the rules or not? McCallum’s point about paternalistic compliance programs underscores my own personal belief:  not enough action is being taken yet to address the complex financial, literacy, and socioeconomic factors that are at play and influence a patient’s ability to comply or engage in their own healthcare.

1.    Financial

The amount of money U.S. patients spend on healthcare is increasing at staggering rates.  Nearly one in two sick Americans cannot afford health care, even those with health insurance, according to a Kaiser Family Foundation analysis.  And, they don’t understand what they’re getting for their money: 72% of patients said they’re confused by their explanation of benefits and 70% are confused by their medical bills.
The ability for patients to engage in their own care becomes increasingly difficult if they can’t afford the services necessary to meet their own healthcare needs, and perhaps don’t even understand if they can afford them.

2.    Literacy

In a 2018 study, researchers developed a healthcare system literacy index to quantify the relationship between U.S. consumers’ understanding of how health insurance works and if a lack of understanding impacts healthcare costs.

They found that 52% of U.S. consumers have low healthcare system literacy—including 33% with no experience and 19% who are novices. Consumers with low healthcare system literacy contact customer service 13% more often than high literacy consumers—resulting in an estimated $26 higher administrative cost per every consumer who has low healthcare system literacy. That leads to an extra $3.4 billion a year in extra administrative costs.

One solution researchers recommended is to use community members trained to help people navigate the healthcare system, called lay navigators.  However, the current administration greatly cut funding for these navigators from $36 million in 2017 to $10 million each year from 2018-2021. Overall, the navigator funding has fallen 84% since 2016.
With less community support, engaging in a complicated healthcare system becomes more difficult for 52% of the population who have a low healthcare system literacy.

3.    Socioeconomic

Housing, social services, geographical location, and education are some of the most common social determinants of health. Most prominently, poverty affects housing.  Although individuals can lose reliable housing for several reasons—trauma, violence, mental illness, addiction, or another chronic health issue—poverty remains a notable factor driving homelessness.  Poverty can also limit access to healthy food, safe neighborhoods, good schools, and healthcare. The U.S. has among the largest income-based health disparities in the world. Poor adults are five times more likely as those with incomes above 400% of the federal poverty level to report being in poor or fair health.  A landmark study found that since 2001, life expectancy has increased by about 2.5 years for the top 5% of the income distribution, with no gains for those in the bottom 5%.

Limited access to healthcare for those who may need it most can severely hinder the level of healthcare engagement. How do you engage in a system you have trouble accessing?
Unfortunately, there is no simple or easy answer to solving the above three challenges that impact the ability for patients to engage in their own healthcare. These obstacles are deeply ingrained in today’s U.S. healthcare system.

3 Obstacles Physicians Face When Working to Improve Engagement

Both of the recommended initiatives to increase patient engagement discussed above heavily rely on the ability of practitioners to support and guide their patients through a complex healthcare system to make important decisions about their health.

As the NEJM Catalyst Insights Council report states, “The two most effective patient engagement initiatives identified by the NEJM Catalyst Insights Council don’t require special technology but rather time, trust, and communication.”
As with the obstacles patients face, physicians also face limitations in executing the recommended patient engagement initiatives:

1. Physicians are motivated, or even required, to spend less time with patients due to payer reimbursement guidelines.

2. Additionally, much of their time with patients isn’t focused on their care or collaborating on healthcare plans, but on a computer screen fulfilling required EHR tasks.  This has led to a pervasive conflict between what the system currently requires of physicians vs. what they were trained to do.

Read how EHR and business demands contribute to clinician burnout in our 2019 report on clinician burnout in healthcare >>

3. Additionally, shared decision-making between patients and practitioners assume a certain level of health literacy on the part of the patient that is often not there. As mentioned, socioeconomic differences in care for U.S. consumers has proven to be a factor in their ability to participate fully in the U.S. healthcare system for practical reasons, such as lack of transportation or access.  It becomes more difficult to share decision-making powers with patients who have no prior knowledge to draw on.

Though the desire to find a quick fix to “turn on” patient engagement is understandable, the obstacles both patients and clinicians face are complex and ingrained in our healthcare system. To see large scale advances in patient engagement, healthcare professionals should consider steps to lessen these impacts.

In the final post in our patient engagement series, I’ll discuss the role technology can play in lessening these barriers to enable higher levels of patient engagement.