Want to get patients involved? Just ask them how

More healthcare organizations are intentionally asking for feedback on service delivery, or integrating patients and families into care design.

More healthcare organizations are seeing patients not just as recipients of care, but as important team members crucial to the success of their care.

More than that, patients are ultimately consumers, and provider organizations understand the importance of engaging patients to architect and be involved in their own care.

That’s not the way it’s been historically in healthcare. Care delivery processes have been honed over decades to meet the needs of doctors and provider organizations, said David J. Cole, MD, president of the Medical University of South Carolina, at the HDM KLASroom’s presentation Wednesday, the last session of a four-part series of Traversing the Patient Experience Ecosystem. Recordings of the series can be found here.


“Of all the awesome things that have happened in healthcare, somewhere in there we have lost sight of those we care for,” Cole said. “You come in and told patients about what you’re going to do for them, but then never asked them what their take is on that. From my perspective, we have to put patients at the center of care.”

The formula for doing that, while simple, represents a radical change for the industry. Many have started the process by simply being more intentional about asking consumers how they want to receive care, and in what ways they want to be involved in the process.

Consumer priorities shift in healthcare, noted Rebecca Hammond, vice president of consulting services for KLAS Research. For example, only about 4 percent of consumers surveyed by KLAS before the COVID-19 pandemic said telehealth was an impactful technology for delivering healthcare; that soared during the lockdown, and providers responded.

“Prior to the pandemic, adoption levels (by providers) were low, about 2 to 5 percent, but in the heart of the pandemic, there was 35 to 90 percent usage of telemedicine,” Hammond said. An extensive survey of about 11,000 consumers also indicates wide use of telemedicine during the pandemic. Consumers’ top preferences are self-scheduling, self-registration and telemedicine.

“All three of these are driving at convenience – how do I have more control, navigate the system in a way that’s personalized for me,” Hammond explained.

Some healthcare organizations are looking outside the industry to adopt consumer-focused approaches that other industries have mastered. Doing so will enable them to study “the questions, pain points, frustrations, delays and how organizations can leverage technology to make it easier to better serve communities,” Hammond said.

Healthcare organizations can begin more simply to study their consumer base by asking them for input. However, that represents a sea change in strategy, buy-in and support from key leaders, and a willingness to respond to what patients and families say.

“Providers are in such a position of power; what does it mean that we’re supposed to partner?” said Caroline DeLongchamps, manager of patient- and family centered care for MUSC. “Partnering means including them in information sharing so they feel empowered and invited to be a part of their care.”

“We have to have the humility to ask those who we serve, “How are we doing, how does it intersect with you?” Cole added. “As providers, we are very siloed, very tiered, and we don’t embrace a team beyond all the traditional dimensions of those we consider to be healthcare providers..

“It’s not just about providing the best care, but the best care and the best caring. If we have those two elements, it makes a big difference. We have to be more holistic about what we’re doing,” Cole added.

At MUSC, a significant initiative involve patient and family advisory councils, which offer input into various projects and initiatives. For example, councils were involved in the design of the MUSC Shawn Jenkins Children's Hospital.

That participation is representative of a philosophy of patient and family involvement in care, said David Zaas, MD, CEO of the Charleston division of MUSC.

“A lot of our system was designed around providers, built around providers, not around patients and families,” he said. We need to evolve our delivery system, not just technology and new medications, to find how to engage patients and families differently to improve care. How we lead with compassion is more important than the clinical care we deliver.”

That requires an openness to inclusivity in care provision, Zaas concluded. “We define the care team as not only including doctors and nurses, but also patients and families, so how do we engage them in decision making? We have an outstanding group of patient and family advisors at MUSC, and they’re integrated into our management, governance and day-to-day decision making.”

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