Patient Engagement: A Key Healthcare Priority

HA staff recently attended the National Health Council’s (NHC) Science of Patient Engagement Symposium. The event, hosted in Washington, D.C., brought together an array of patients and patient organizations to speak on the importance of patient-centered programs and policies within the American healthcare system.

The event sessions included: 

Pediatrics and Caregivers

Engaging with the Adolescent Community

Transition of Care from Pediatrics to Young Adult

Realities of Adult-Based Care for Women’s Research

Partnerships in Research

Ageism Within the Healthcare System

The various panels brought forth a single theme: patients are often overlooked and unheard within the American healthcare system. 

This is a commonality that unfortunately resonates with many patients in the hydrocephalus community. Being overlooked by providers can come in many forms. For example, a frontline medical professional may downplay patient symptoms during a possible shunt failure. This neglect can be life-threatening. Medical disregard can also be seen in the number of providers unwilling to take pediatric hydrocephalus patients when they transition to the adult healthcare system. The complexity of our condition may act as a factor that dissuades them from caring for us. Patients are often left to navigate the healthcare system on their own. 

We are already seeing the damaging effects of a healthcare system that fails to support patients with chronic conditions. Financial incentives in healthcare, like the common fee-for-service model (healthcare providers are reimbursed based on the quantity of services they provide), can alter the focus of health systems. When health systems are centered on financial return instead of quality, patients will disproportionately lack the efficient and quality care they need. The voice and wellbeing of patients must be the sole healthcare priority to address this.

Health providers and systems that fail to take the concerns of patients into account, risk the possibility of misdiagnosis which can lead to greater health challenges down the road. These challenges have led to a decline of trust within the healthcare system. Ipsos found that two in three patients say their trust within the healthcare system has declined. If patients lack confidence that they will be heard and treated with respect, they may avoid care altogether. Decreased levels of trust can also cause feelings of isolation and anxiety, challenges that are all too common in the hydrocephalus community.

These barriers have forced patients and caregivers in the complex care community to be the sole advocates for themselves. Although advocacy is important within the healthcare system, it begs the question; why is this necessary? The constant efforts of patients and caregivers needed to educate medical professionals can be exhausting and time-consuming. Patients have a right to be heard. Respect and concern should not be something patients need to fight for. 

Lack of voice has promoted the patient community to demand better from healthcare stakeholders, which was a focus at the NHC symposium. Providers must strengthen avenues that build trust with their patients. One way to achieve this is for physicians to “meet patients where they are at”, an idea that was highlighted by various panels at the conference. During the “Adolescent Engagement Session”, Theressa Jackson, a mother of a son with hydrocephalus, shared an example where a neurologist conducted a checkup visit with her son under an examination table when he refused to come out. Instead of seeing her son as a “problem”, they were able to meet him where he was comfortable. Examples like this show the importance of patient-centeredness and what the standard of care should be.

“Being invited to share our family’s story of living with hydrocephalus at the NHC Symposium was truly heartwarming,” said Theressa Jackson “Doctors and policy makers need firsthand insight from patients and caregivers living with this rare condition to create positive change in healthcare and policy. I am looking forward to hydrocephalus being discussed in more of these important forums!” 

This approach is also crucial for developing sustainable relationships with patients in the complex care community. These relationships cannot be a “one size fits all” approach. In a system where patient voice has historically been limited to certain demographics who do not represent the full scope of patients, new programs must take into account race, gender, socioeconomic status, and disability. True inclusion can shape new policies that are catered to the medical needs of specific populations in our healthcare system.

One of the groups regularly left out of the discussion is individuals with disabilities. Although there was a diverse array of patients at the NHC symposium, there was an underrepresentation of speakers with physical or neurological disabilities. Patients in this category have a unique story and many struggle to receive appropriate accommodations. Challenges like accessible transportation, bias, discrimination, physical and communication barriers within healthcare centers, and lack of provider training can result in subpar healthcare outcomes for this patient population, which some members of our hydrocephalus community fall under. 

Successful utilization of patient engagement can have strong trickle-down effects. Patients who retain strong levels of trust within the healthcare system have greater healthcare outcomes on average. Adoptions of new methods will not only strengthen patient experience within the healthcare system, but will save healthcare costs as well. This creates a win-win for consumers and providers alike. 

Successful inclusion begins within the patient stakeholder space, something that the NHC Symposium has prioritized. Strong representation can create a healthcare system that functions for all patients, no matter the condition or walk of life. The Hydrocephalus Association is committed to empowering patients to create a more inclusive and trustworthy healthcare system.

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