Excellence in Patient Care: Promoting the Patient Voice in Pursuit of Evidence-Based Care

Bonnie FreshlyBonnie Freshly, MEd, CMP, is the Excellence in Patient Care Senior Project Specialist with ASN. Susan Stark is ASN Vice President for Excellence in Patient Care.

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Susan StarkBonnie Freshly, MEd, CMP, is the Excellence in Patient Care Senior Project Specialist with ASN. Susan Stark is ASN Vice President for Excellence in Patient Care.

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Excellence in Patient Care (EPC), organized in 2021, focuses on ASN's clinical priorities to provide high-quality care for people with kidney diseases. EPC relies on the insight of six exceptional patient advocates who inform its 11 projects, which aim to advance the use of best practices and evidence-based care for people with kidney diseases across the spectrum of care options. EPC includes the following wide-ranging projects: Nephrologists Transforming Dialysis Safety (NTDS), Diabetic Kidney Disease Collaborative (DKD-C); COVID-19 response; acute kidney injury (AKINow); Adult Immunization Project (AIP); Transforming Dialysis Access Together (TDAT); Home Dialysis Project (HDP); and Emergency Partnership Initiative (EPI).

The shared foundation of these initiatives is science, a focus that has served EPC well, particularly through the beginning and height of the COVID-19 pandemic when the COVID-19 Response Team was created and promoted the call to “follow the science.” This foundation of sound clinical decision-making has resulted in numerous publications, webinars, focus group sessions, online learning modules, and resources that have enriched the kidney community.

As EPC has continued to evolve, it has become evident that science is not enough—each clinical project comes to its best conclusion when the project considers the deep and multi-factored impact of kidney diseases on patients. Acknowledging the central role of the patient voice led to significant roles for patient advocates on EPC project teams and the creation of educational products aimed at both patients and providers.

COVID may turn out to be a real benefit to our community, because it has given doctors a way to say that science is messy. COVID has shown that things change rapidly; we learn new things, so we do new things.

—Glenda Roberts

In a recent panel discussion, four patient advocates were asked about their involvement with EPC and the impact of integrating patient input with EPC project goals. Participants included Glenda Roberts; Quin Taylor, BCPA; Patrick O. Gee, Sr., PhD, JLC; and Marla Levy. All four patient advocates vigorously support the efforts of EPC to engage patients, applaud committee volunteers for their willingness to listen, and broadly recommend a heightened level of involvement for, and outreach to, patient advocates as EPC plans its next steps.

EPC COVID-19 resources calmed the kidney community in the midst of a pandemic…and showed that there was a community that actually cared. When you start seeing friends and peers and colleagues succumb because of an invisible virus…then when you see the urgency of folks scrambling, trying to understand…trying to provide as much information…it allowed patients to see the humane side of physicians that you wouldn't normally see in normal circumstances. It allowed patients to hear from physicians who said, ‘I don't know, but we can find this out together.’ I think it was very transparent. I think it was very safe, but it also promoted engagement. It built on the physician-patient dynamic that you need both components to get this done. [By] opening that [dynamic], look at the [number] of patients that now have found their voice because of these projects … It's been a blessing to see that patients are gravitating to these tools … I applaud the efforts of EPC and think it really saved an entire community and brought some peace and stability to what could have been an erratic and out-of-control situation.

—Patrick O. Gee, PhD, JLC

These patient advocates describe EPC's successes and passionately support EPC incorporating the following components in its roadmap for future work:

1. Fostering honest dialogue between patients and members of their care teams—even, and perhaps especially, when the answer is, “I don't know.”

Ms. Roberts highlighted “Let's Reset” as a valuable tool for both patients and providers to “communicate more effectively with the team to make sure that we avoid infections.” Let's Reset is a technique developed by NTDS that empowers patients to express criticism or concern to their caregivers without fear of reprisal.

Dr. Gee noted that before the creation of the DKD-C Task Force, the patient perspective was not heard. Working with the task force empowered his advocacy to go into the community and explain to other patients the impact of unmanaged diabetes and to highlight new therapies, such as glucagon-like peptide-1 receptor (GLP1) agonists. He now encourages other patients to talk to their primary care physicians, nephrologists, or transplant teams about new therapies.

Ms. Taylor applauded the efforts of EPC in its groundbreaking work to provide information to patients during the COVID-19 pandemic and to assist with securing priority vaccination for patients. Added Ms. Roberts, “ASN reached out and included me as a patient on that committee. That was really important because it helped ensure that the patient voice was always present.” She highlighted the value of ASN's many COVID-19-related webinars available to the public and noted that they became a trusted resource for patients as well.

During the pandemic, patient advocates perceived a new vulnerability in physicians being willing to say, “I don't know.” Ms. Roberts believes this has gone a long way toward rebuilding trust that had been lost. “COVID may turn out to be a real benefit to our community, because it has given doctors a way to say that science is messy. COVID has shown that things change rapidly; we learn new things, so we do new things,” she said. “I think that will build a culture in the kidney community so patients and physicians can speak together more effectively.”

There are so many lonely people who don't have advocates, and they don't even know where to start to ask for help.

—Marla Levy

2. Development of education that meets patients “where they are.”

All four patient advocates feel strongly that there is a wide area of opportunity open to EPC to reach those patients who have not yet learned, or had the opportunity, to advocate for themselves.

As Ms. Taylor explained, “My concern is: What about the patients in the facility who don't have this opportunity? We need to make sure their voices are heard and amplified. To empower patients, you have to educate them at their level. I would love to see EPC continue education. We know that kidney disease is rising at an incredible rate in Black, Indigenous, and people of color; a lot of that can be potentially curbed by preventative care, making sure that you educate people about getting kidney screenings …We need to talk about eating right and exercise before, so they never get hypertension or diabetes, or if they do, they know what to do to take care of themselves. That will decrease the number of people on dialysis, which is what we all want. So, let's be more proactive about prevention. Make sure people have the education and the resources to take care of themselves.” This philosophy supports outreach to patients with chronic kidney disease (CKD).

Dr. Gee emphasized that along with the patient's voice, social determinants, with all the connections and context that are so critical, must be considered. He recommended, “If you’ve never been impacted by food apartheid, by transportation issues, by environmental disparities, the only way that science can understand what human suffering really is, is to meet folks in their homes [and] in their communities. To break down barriers, we need to go into these communities unified…focusing on human beings. If we are consistent in that effort, then all of the projects of EPC can consistently improve future outcomes.”

When folks get diagnosed with a chronic illness, you get shamed…Nobody asks you how you’re doing, nobody asks if you want to seek counseling [or if] you want me to talk to your family…and that's traumatic…You have to learn to understand [that] this machine is my only means of living. Nobody said, ‘There's hope.’

—Patrick O. Gee, PhD, JLC

Part of meeting patients where they are includes inviting patients to be a part of the larger process. Clinical trials offer this opportunity. Ms. Roberts stated, “I would like to see physicians ask patients if they’re interested in clinical trials… After being diagnosed with kidney disease in 1972, yesterday was the first time a doctor ever asked me if I wanted to participate in a clinical trial. I think that's egregious.”

3. Acknowledgment of the medical trauma that often comes with the diagnosis of a chronic illness.

The pain of learning about, and how to deal with, a frightening diagnosis is often overlooked in the rush to provide life-saving treatment. Yet impressing upon care team members the importance of understanding—and acknowledging—this stress on patients may be one of the most critical areas of education that EPC can provide to clinicians.

People don't understand…when you get diagnosed with CKD or ESKD [end stage kidney disease], the life that you wanted doesn't quite happen anymore. And you have to figure out how to mourn and deal with those losses….I’m stuck in this chair, and I feel like I can't get up and move and be a world-changer. I am sad. I am heartbroken. I am disappointed. And there's nothing I can do about it. Because if I don't [do dialysis], I’m gonna die.

—Quin Taylor, BCPA

4. Engagement on a human level.

Above all other points, the patient advocates call on EPC to stress to physicians that the most important component of patient care is acknowledging the patient as a human being.

Advocates note that the patient-physician relationship can take a huge step forward with a few spoken words. As Ms. Levy notes, “When you feel more comfortable with your doctor, this can open the door to sharing very important information you normally wouldn't share. It can be as simple as asking, ‘Are you okay?’”

Overlooking engagement can have a profound impact on patients. Ms. Levy, whose experience with AKI involved life support and repeated attempts at outpatient dialysis, explained, “I have a wealth of knowledge…and no one's ever asked me to speak; I’ve begged to speak at grand rounds, to patients; no one's interested.”

Dr. Gee offered his vision for a culture of humility, where patients and providers are each respected for what they offer to the care experience. He challenged providers to consider, “How do you manage all this power that you have and yet, do it in a way that you’re humble, and you get to know your patient[s] before their disease state… this breaks down barriers of trust, by asking simple questions…Be a human being.”

Moving forward, EPC will build on its projects’ successes, embracing the unfiltered patient voice, guided by the four key approaches outlined here. As Ms. Roberts summarized, “No matter what the future is, [patients] are central to that experience.”

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