Patient Engagement and the Promise of Better Outcomes

Patient engagement. It means different things to different people.

Some talk about it in terms of Health Information Technology (HIT), like Electronic Health Record (EHR) systems and expected efficiencies and cost savings. Others talk about patient engagement in terms of how patients and providers interact and how communication can be improved. Still, others talk about patient engagement in terms of patient empowerment and better health outcomes for patients.

Will the promises of patient engagement be realized? Or will those promises be broken?

Patient Engagement: The One Thing Everyone Agrees On

Everyone interested in fostering patient engagement is certain that it will yield benefits—for the clinician, the provider, the patient, and the greater society.







Everyone agrees on the benefits of patient engagement – Source


Studies have shown that patients who are actively engaged in their health and care experience better health outcomes. Their habits and behaviors support good health and effective treatments.

Engaged patients are more likely to take preventative measures like having regular health checkups, screenings, and immunizations. They are also more likely to eat healthfully, exercise regularly, and avoid risky behaviors like smoking. Fewer illnesses, and illnesses that are identified earlier and therefore easier to treat, are the result.

Highly engaged patients living with chronic illness also experience better health outcomes than less activated patients. The highly engaged person living with a chronic illness is more likely to take their medications as prescribed and consistently engage in self-care and self-monitoring behaviors. Fewer complications and fewer emergency admissions to the hospital are the result.

As for costs, highly engaged patients experience fewer hospitalizations and emergency room visits overall. This keeps the healthcare costs of engaged patients below the costs of disengaged patients.

Technology provides new tools for patient engagement. – Source


Clinicians and providers are turning to technology for systems aimed at improving patient engagement.


Patient Engagement: The Thing No One Agrees on

The definition and focus of patient engagement vary depending on the role, perspective, and goals held by each party to the conversation.

Clinicians focus on the patient’s responsibilities.

Some clinicians define patient engagement in terms of the patient’s level of involvement and its effect on patient adherence. After all, if the medication or therapy prescribed isn’t taken once the patient leaves the examination room, it cannot do its work.

Clinicians reported that very few of their patients are highly engaged. – Source


In the NEJM Catalyst Insights Council’s first survey on patient engagement, respondents defined patient engagement as:

      • Patients are interested in participating in choices about their health care;
      • Patients are responsibly taking ownership of those choices and adhering to their care plans (ideally co-created with providers); and
      • Patients are taking an active role in improving their health.

When asked about the level of engagement among their own patients, respondents admitted that very few of their patients exhibited a high level of engagement. Forty-two percent of respondents said that “less than a quarter of their patients were highly engaged.”

Providers focus on the potential payoff.

Looking ahead, providers are committed to investing in patient engagement systems, including systems that; collect patient-generated data, manage referrals and patient retention, connect with community partners, and offer convenient patient access to health services.

This investment is being made all in the hope that these HIT systems and platforms will control costs, improve efficiencies, and result in better health outcomes. However, when it comes to patient engagement, the payoff isn’t panning out the way providers expected.

The American Hospital Association’s Trendwatch reports that the vast majority of hospitals provide patients access to some form of patient portal. However, the tasks built into these portals vary, which has resulted in functionality lags for key tasks, like scheduling an appointment and refilling a prescription.

Ninety-two percent of hospitals provide patients with a way to view their medical records online, but only 45% offer appointment scheduling and only 44% have an online prescription refill process.

While the vast majority of US hospitals give patients a way to access their medical records online, other portal capabilities lag. – Source


In its “Vision for a Principled Redesign of Health Information Technology,” the American Academy of Family Physicians argues that “technology has great potential to help foster connections and relationships among health care professionals, individuals, and communities.” However, instead of being a catalyst for patient engagement, they found that poor usability and utility in HIT often results in barriers.

Patients and caregivers focus on getting better care.

The story of the Stroud family is a case in point.

Max Stroud tells their story of patient engagement in “The Real Return on Investment: A story about the personal value of an electronic health record.” Her father contracted cancer and experienced debilitating pain. Patient engagement, and EHR, enabled him to get better care and experience a higher quality of life.

Max Stroud and her family have experienced firsthand the benefits of EHR. – Source

The clinicians at the cancer center where Max Stroud’s father received treatment used an EHR system. They captured the details of her father’s state of health and easily coordinated his treatments among various specialists. His pain was well-managed and he was “able to enjoy life’s simple pleasures, like a walk through the woods or a trip to the market without pain.”

Unfortunately, all too often patients and caregivers experience difficulties in communication, medical record sharing, and coordination of care.

This equilibrium for the Stroud family was lost during a trip to the emergency room at the community hospital, which used a paper-based system. The paper system was extremely cumbersome and plagued with delays. Mr. Stroud’s pain management schedule was sent into chaos and it took days to be reestablished and additional time for his pain to subside.

The Stroud family had to rely on their knowledge of their father’s health condition and treatment regime. They called upon their ability to effectively advocate for him with the staff of the community hospital. Ultimately, they were able to get their father the care he needed, but they weren’t able to overcome the delays inherent in the community hospital’s workflow.

In this case, the Stroud family valued the benefits of EHR and patient engagement for the purpose of getting better healthcare for Mr. Stroud.


Barriers to Patient Engagement

Whether it’s finding new ways to work or implementing new technology or adopting new self-care behaviors, change is often met with resistance and unanticipated complications.

For clinicians, patient engagement can mean resisting new ways of working.

The new demands of HIT systems are having a direct effect on how clinicians interact with patients.

One recent (and admittedly extreme) example is the story of a New Hampshire doctor who lost her medical license partly because she refused to move from handwritten medical records to using electronic medical records. She argued that “electronic medicine is for the system, not for the patients.”

EHR systems, in particular, are contributing to physician burnout. One study cited that 55% of physicians have thought of leaving medicine. And of those, 68% said they were thinking of leaving medicine because they spent too much time on data entry to EHRs.

EHR, in particular, is contributing to physician burnout. – Source

For providers, patient engagement has proven to be complicated.

The healthcare workflow has many moving parts and no one system has been able to address every step. Many companies are working on the individual pieces like mobile apps, data sharing, and billing. This piecemeal approach that addresses parts of the healthcare workflow separately is also creating interoperability and integration issues.

Providers are finding that once deployed, there’s no guarantee that patients will use the systems. One example of low patient adoption of patient portals is reported by the U.S. Government Accountability Office (GAO).

The GAO reports that nearly 90% of patients in the HHS’s Medicare Electronic Health Record Incentive Program were offered access to their health information online, but less than a third actually took the time to access their information online.

GAO found less than a third of patients accessed their health information online. – Source

The GAO was not able to offer any explanation of why so few patients accessed their health information online or the effect of the HHS attempts to “enhance patients’ ability to access their electronic health information.” No information was available.

For patients and caregivers, patient engagement promises easier access to their health information…but, we’re not all the way there yet.

Patient portals are often mentioned as a way to improve patient engagement and patients have demonstrated a desire for easy access to the information that portals can provide.

In the report Right Place, Right Time: Improving access to health care information for vulnerable patients, researchers found that 86% of patients and caregivers say that access to lab and imaging results was an important feature for a patient portal to have.

Other important features that patients said they want access to through the patient portal are:

      • Doctor visit summaries with instructions (78%),
      • Doctor visit notes (76%),
      • Prescription refills (75%),
      • Billing details (72%), and
      • Online appointment booking (72%).

Researchers also found that “portal usage is more common among middle-income patients (56%) than lower-income patients (40%).” They point to a number of possible reasons for the lower usage rates among more vulnerable patients, including:

      • Not being aware of these new tools,
      • Their insurance not being integrated into the patient portal,
      • Having limited internet access, or
      • Being less internet savvy.

This gap in patient portal use among different economic groups points to only one barrier to expanded patient engagement. Other barriers also exist.

There are language barriers for patients who don’t speak or have limited ability with English. For people with visual or physical impairments, a poorly designed system will bar them from accessing information online.

Janice McCallum, principal at Health Content Advisors, speaks to the central role patients play in expanding 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.”

Janice McCallum argues in favor of patient-centric and patient-driven engagement systems. – Source


Patient Engagement: Where to Next?

Do we really need all this technology and infrastructure to improve patient engagement?

A simple written checklist has been shown to improve health outcomes. Still some argue that “smartlists” that combine a personalized checklist with technology yield better health outcome results.

And yet, 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. These top two initiatives are:

      • Having medical practitioners spend more time with patients, and
      • Shared decision-making between practitioners and patients.
The most effective patient engagement initiatives don’t require specialized technology. – Source


In the clinician’s resistance to using EHRs and the patient’s resistance to adopting patient portals, we have uncovered a potential Achilles heel for patient engagement HIT systems.

As in the case of the Stroud family, even after seeing the benefits of EHR, Max Stroud still values the face-to-face conversation between patients and clinicians. “Patients need more than a portal,” she said. “Real meaningful conversations with patients can bring to light problems you didn’t know you have.”

Providers can build patient engagement systems, but without system designs that meet the needs of all the people in the healthcare workflow, clinicians and patients won’t necessarily use them.

Amy Schwartz, who spoke on human-centered design for patient engagement systems at the Pop Health Forum, argues for an empathetic approach. She calls for involving users in the patient engagement system design process. By users, she means “patients, family members, care teams, caregivers, and other support people.”

Amy Schwartz argues for an empathetic approach to HIT system design. – Source

Holding the belief that involving Patient Experts at every stage of the product life cycle improves patient engagement, WEGO Health launched their Experts platform in February of 2017. The purpose of the Patient Experts platform is to enable healthcare companies of all types to hire directly and on-demand from a vetted network of Patient Experts.

Where do you think the future focus of patient engagement lies – in technology, in the people processes, or in both?

How do we bring both together so that the promise of patient engagement is fulfilled?

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