ASN Executive Vice President's Update: How ASN Engages People Living with Kidney Diseases

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During the past decade, ASN has engaged people living with kidney diseases in the United States. By involving patients directly—as well as by partnering with patient organizations like the American Association of Kidney Patients (AAKP), the American Kidney Fund (AKF), and the National Kidney Foundation (NKF)—ASN has amplified the patient's voice in helping to realize the society's vision, mission, and goals (1).

ASN is a medical specialty society incorporated as a not-for-profit (or more precisely, tax-exempt) organization to advance kidney health through high-quality patient care, research, education, and administration. Whereas most of ASN's 21,655 members are nephrologists and PhD scientists in the United States, an increasing number of members live abroad (in 140 countries) or represent other members of the kidney care team, such as nurses, pharmacists, and advanced practice practitioners (APPs).

At their inception in the 18th century, medical societies did not include patients as members. This exclusion reflects the evolution of medicine, particularly in the United States. As Paul Starr explains in The Social Transformation of American Medicine, “Eventually, the boundaries would be drawn so that education and licensure coincided: Only graduates could be licensed and only the licensed could practice” (2). This approach meant that “all licensed physicians, therefore, would have strong inducements to join their local medical society.”

From the 1700s through ASN's establishment in 1966 (and later for a few more specialties like emergency and hospital medicine in 1968 and 1997, respectively), the focus of US medical societies evolved from distinguishing between those who “are duly educated, and properly qualified for the duties of their profession, and those who may ignorantly and wickedly administer medicine” to defining specific specialties in medicine (2). After the American Gastroenterological Association was founded in 1897, societies were established in other internal medicine specialties, such as pulmonary diseases (1905), endocrinology (1916), rheumatology (1934), cardiology (1949), and hematology (1958).

To define their fields, specialty societies like ASN:

• hold annual meetings to showcase cutting-edge science and clinical excellence;

• publish peer-reviewed journals to define the field and codify advances;

• help regulators (like the Accreditation Council for Graduate Medical Education and the American Board of Medical Specialties) define graduate medical education, certification, and recertification;

• offer accredited continuing medical education;

• determine standards for high-quality care—often through clinical practice guidelines—which ASN will start producing later this year as kidney health guidance (3);

• advocate on behalf of their members in the legislative and regulatory arenas; and

• create networks of like-minded professionals.

Around the same time as physicians were joining US medical specialty societies to define their respective fields, voluntary health organizations were forming. During the 20th century, patients, their families and caregivers, and other advocates were establishing patient-centered organizations, such as the American Lung Association (1904), the American Cancer Society (1913), the American Heart Association (AHA; 1924), the American Diabetes Association (ADA; 1939), the Arthritis Foundation (1948), and the NKF (1964). Today, voluntary health organizations are called patient organizations, are also not for profit or are tax exempt, and “engage in an array of direct-service programs, which can include membership, support, advocacy, education, and research” (4).

Complementary to medical specialty societies, patient organizations:

• educate patients, their families and caregivers, and other advocates about the disease;

• connect patients with physicians, scientists, nurses, physician assistants, pharmacists, and APPs, as well as social workers, dieticians, and other allied health professionals;

• raise awareness about the disease among the public, the media, politicians, policymakers, patients, health professionals, researchers, and others;

• advocate for more government and private funding for disease-specific research, as well as communicate with government regulators, such as the US Food and Drug Administration;

• fund scientists, researchers, and other investigators to conduct disease-specific research, as well as invest in companies trying to bring new therapies to market;

• help patients access clinical care or participate in research studies; and

• create networks of patients, families, and caregivers to provide emotional, informational, and financial support.

The differing histories and contrasting (if complementary) purposes are also reflected in how medical specialty societies and patient organizations generate revenue. Traditionally, specialty societies rely on member dues, registration fees for meetings and educational activities, and publishing income, as well as corporate support through promotion at annual meetings and advertising in journals. Patient organizations depend on contributions from the public (including patients, their families and caregivers, and physicians and health professionals); funds raised at local events, such as community walks, which also raise awareness; financial support to establish coalitions mostly directed at politicians and policymakers; and sponsorship from commercial entities, foundations, and government.

The governance of medical specialty societies and patient organizations further highlights their differing purposes. For example, the ASN Council, the society's governing body, includes nine members who are nephrology clinicians or scientists elected by their colleagues, whereas the governing bodies for patient organizations are usually appointed. With 28 members, the NKF Board of Directors “consists of nephrologists, transplant surgeons and other kidney healthcare team members, civic leaders with diverse business expertise, volunteers, and people affected by kidney disease” (5).

Despite these differences in history, purpose, financing, and governance, medical specialty societies and patient organizations have started to become more alike during the past 2 decades. Much of this similarity results from efforts—particularly by specialty societies—to become more patient centered or directed. Additionally, external entities, such as regulators, have engaged patients as never before. For example, the American Board of Internal Medicine includes at least one person living with kidney diseases on its nephrology specialty board (currently, AAKP Chair of Policy and Global Affairs Paul T. Conway) and invites the NKF to join ASN and the Renal Physicians Association to participate in nephrology board meetings, comment on proposals related to certification and recertification for nephrologists, and define the “boundaries” of nephrology as a specialty.

Every tax-exempt organization is also trying to survive unprecedented pressures in 2024. Navigating technological innovations, the COVID-19 pandemic, tumultuous economic times, the acceleration of private equity into health care (which began in earnest following passage of the Affordable Care Act), a proliferation of not-for-profit and for-profit competitors, direct-to-consumer advertising, changing demographics and preferences, workforce shortages, and other challenges make medical specialty societies and patient organizations increasingly more difficult to differentiate. By working more closely together, however, specialty societies and patient organizations could strengthen the medical profession and clarify the roles that each can uniquely play.

Recognizing the need for greater patient engagement and an increased focus on patient directedness, the ASN Council has developed a decision-making mantra that starts with the question: “What is in the best interests of people living with kidney diseases and their families?” (Table 1). This first question is especially important in guiding the society's efforts to influence legislative and regulatory policy. If patient organizations like the AAKP, the AKF, and the NKF succeed in raising awareness and increasing federal funding for medical research, then medical specialty societies like ASN are well positioned to advocate for innovative research, a strong educational continuum, and—most important—high-quality care.

Table 1

ASN's decision-making mantra

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Greater alignment between medical specialty societies and patient organizations strengthens this “efficacious cycle” from awareness to research funding to innovation to education to care (Figure 1). For example, the cancer community has benefited from Mary Lasker's efforts to raise awareness in the 1950s and 1960s, former US President Richard Nixon's “war on cancer” in the 1970s (which was supposed to cure cancer in 5 years in time for the US Bicentennial), myriad innovations in the field, the popularity of oncology as a career choice, the advancements of current care options, and the Biden Administration's Cancer Moonshot to prevent “more than 4 million cancer deaths by 2047” (6, 7). This pattern repeats itself in cardiovascular diseases, diabetes, HIV/AIDS, and other diseases/specialties.

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The efficacious cycle of medical specialty societies and patient organizations

Citation: Kidney News 16, 4

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In addition to aligning more closely with patient organizations and helping the kidney community benefit from the efficacious cycle, ASN benefits in at least seven ways from engaging people living with kidney diseases and becoming more patient directed.

1. Enriches ASN's public-private partnerships. Currently chaired by Patrick O. Gee, Sr., PhD, the Kidney Health Initiative (KHI) Patient and Family Partnership Council guarantees that KHI workgroups include patients or care partners, the KHI Board of Directors has patient representatives, and the KHI Annual Meeting spotlights real-life experiences of people living with kidney diseases. Included on the Kidney Innovation Accelerator (KidneyX) Steering Committee, patients review all submissions for KidneyX prize competitions. To date, KidneyX has awarded 25 prizes to people with kidney diseases who developed “ideas and fixes” through “their own everyday experiences and ingenuity” (8).

2. Ensures ASN excellence in patient care. Through 13 projects (10 current and 3 starting this year), ASN aims to improve clinical nephrology by ensuring “all people with kidney diseases receive the best evidence-based care possible” (9). To accomplish this goal—and “champion patient experiences, preferences, and values by actively engaging people with kidney diseases”—ASN includes patients in its activities to promote excellence in patient care. Patients serve on an advisory board that oversees all projects, are members of the steering committees for the initiatives, have prominent roles as speakers during webinars and other educational events, and help identify opportunities for improving clinical nephrology.

3. Improves the quality of ASN Kidney Week and publications. People living with kidney diseases serve as editors and authors for ASN's peer-reviewed journals: JASN, CJASN, and Kidney360 (as well as contributors to Kidney News). They also participate in the planning process and as faculty for Kidney Week. Cele's Champions: Cele Fogarty Travel Support Program for Patients helps people with kidney diseases attend Kidney Week as active participants. For more than 30 years, Cele was responsible for the logistical aspects of ASN Kidney Week as it evolved from the ASN Annual Meeting into the premier nephrology meeting in the world. During this time, she lived with kidney diseases and kidney failure.

4. Supports more effective ASN committees, task forces, and panels. Beyond the public-private partnerships like the KHI, activities to promote excellence in patient care, kidney health guidance, publications, and Kidney Week, ASN is inviting people living with kidney diseases to serve on its panels. For example, Nichole M. Jefferson is helping the ASN Health Care Justice Committee identify “opportunities to promote justice in health care and society and influencing social determinants of health, particularly in populations at risk for and overburdened with kidney diseases” (10). Her personal experience with vascular access, peritoneal dialysis, and transplantation helps shape the committee's efforts for all kidney health professionals “to seek just and equitable social conditions for their patients, their colleagues, and their community.”

5. Prioritizes ASN's legislative and regulatory goals. Whenever considering legislation, evaluating proposed rules and regulations, or determining how best to advocate for kidney health, ASN relies on its mantra (Table 1). Starting with the question, “What is in the best interests of people living with kidney diseases and their families?” helps guide ASN to make the right decisions for the right reasons in the legislative and regulatory arena. In turn, the society's positions are easy to communicate, understand, and defend—helping these perspectives endure in an environment that rewards “the long game.” To support shared goals, ASN also prioritizes collaboration with patient organizations in advocacy efforts, such as during regular meetings with members of Congress and their staff.

6. Reinforces ASN's messaging related to kidney health. Inspired by the KHI's approach to patient engagement, ASN has moved from acronym-filled, confusing lexicons to language that raises awareness and promotes an understanding of kidney diseases by the public, the media, politicians, and policymakers. Kidney patients are referred to as people living with kidney diseases. Chronic kidney disease is discussed as kidney diseases. End stage renal disease and end stage kidney disease are called what they are: kidney failure (11). ASN is devoted to screening for, protecting, and championing kidney health, instead of waiting to start treatment when an individual experiences kidney failure.

7. Strengthens relationships between ASN and patient organizations. In addition to working closely with the three patient organizations that represent the entire spectrum of people living with kidney diseases (AAKP, AKF, and NKF), ASN values its relationships with the many patient organizations that represent specific aspects of this experience. These organizations include (but are not limited to) NephCure (rare kidney diseases), the PKD Foundation (polycystic kidney disease), the Oxalosis & Hyperoxaluria Foundation (hyperoxaluria), Dialysis Patient Citizens (dialysis), and TRIO (Transplant Recipients International Organization).

The recent AHA “Presidential Advisory” on “cardiovascular-kidney-metabolic health” provides an exciting opportunity for collaboration among medical specialty societies and patient organizations, such as ASN, the AHA, and the ADA, in these three fields (12). Since their inception in 1924 and 1939, respectively, the AHA and the ADA have awarded more than $6 billion in combined research grants to investigators (13, 14). How might the lives of people living with kidney diseases improve when more of this funding supports researchers focused on enhancing cardiovascular-kidney-metabolic health?

By building on the benefits already realized from meaningfully engaging people living with kidney diseases, ASN is ready to work with the AHA and the ADA—as well as their respective medical specialty societies, such as the American College of Cardiology and the Endocrine Society—and the rest of the kidney community. If aligned, medical specialty societies and patient organizations committed to cardiovascular-kidney-metabolic health can come together to raise awareness, increase research funding, accelerate innovation, strengthen education, and improve the quality of care.