Partnering With Patients to Improve Healthcare Outcomes

TOP - July 2023 Vol 16, No 4 – Online Only - ASCO 2023 Highlights

Chicago, IL—The presidential theme for the 2023 American Society of Clinical Oncology (ASCO) Annual Meeting was “Partnering With Patients: The Cornerstone of Clinical Care and Research.” In his address during the opening session of the meeting, Eric P. Winer, MD, FASCO, Director, Yale Cancer Center, and Physician-in-Chief, Smilow Cancer Hospital at Yale New Haven, CT, and ASCO’s 2022-2023 President, discussed the importance of physician–patient partnerships for improving healthcare outcomes.

“Partnering with patients is the cornerstone of clinical care and research. The preeminence of the relationship should be neither hierarchical nor directional,” he said. “Even though doctors worry about time, we need to form partnerships with patients to provide the best care and encourage participation in clinical trials.”

A “Veteran Patient” at an Early Age

Dr Winer told attendees that he became a “veteran patient” at a young age, when he was diagnosed with hemophilia, which resulted in frequent medical appointments, trips to the emergency department, and hospitalizations, due to joint bleeding and other complications. These first-hand experiences impressed upon him the importance of the relationship between the physician and the patient.

His parents intuitively sought out physicians who would partner with them in caring for their son. “My parents moved on quickly if they didn’t like the doctor,” he said.

Dr Winer went on to say that when he was 13 years of age, factor VIII (antihemophilic factor A) became available for the treatment of hemophilia, which he called a “game-changer,” because it allowed him to participate in typical boyhood activities and become a reasonably “normal” junior high and high school student.

While attending medical school, however, he became 1 of approximately 10,000 Americans between 1979 and 1983 who were infected with human immunodeficiency virus (HIV) from contaminated blood products. Fortunately, he was able to receive highly active antiretroviral therapy, the introduction of which immediately changed the course of HIV infection. As was the case with many other patients with hemophilia, he also became infected with hepatitis C virus.

Dr Winer discussed the stigma associated with HIV, recalling a particular incident when he tried to get dental care that required a root canal. “I was asked to leave the dentist’s office and abruptly denied the care that I needed. I was relieved to find a dentist who finally agreed to treat me,” he said.

In 1984, Dr Winder married his fiancée, Nancy, and over the next 5 years, they had 3 children. In 1987, they moved to North Carolina, where he did his medical fellowship at Duke University. He recounted their serious concerns regarding further stigmatization and the potential loss of his livelihood.

“We lived in uncertainty and in a bubble of secrecy. I was leading a double life, and guilt became my daily companion,” he said. “There are thousands of entries into my health record. I have survived years of uncontrolled bleeding, 45 years of HIV, and I was cured of hepatitis C. I ultimately found a transplant surgeon who installed a shunt that stopped the bleeding.”

Lessons Learned

“How does my experience contribute to my understanding of physician–patient partnerships?” Dr Winer asked, before sharing 5 important lessons he has learned on his journey.

  • Lesson 1. “For the patient with serious illness, the relationship with the healthcare team is paramount. In the setting of serious illness, those relationships are essential. My doctors have helped me lead a normal life. I have also had some mediocre doctors who failed to convey any sense that they cared. Our patients deserve our full attention.”
  • Lesson 2. “Science really matters. We owe it to our patients to step firmly on the cancer accelerator. We will ultimately eliminate death and suffering, assuming patients get the best care. We need to reach out to our patients about what we can provide to make their lives better and make them partners in research.”
  • Lesson 3. “All people face challenges in their lives. We all face adversity and can learn and grow from it. Our own narratives can help us form better partnerships.”
  • Lesson 4. “People have very different reactions to a similar challenge. I tell patients they should try to extract something positive from a cancer diagnosis. We need to be aware that they may be able to or not. For example, a musician will worry about peripheral neuropathy. A young mother may be willing to take any drug or treatment to extend her life. It is important to recognize that the newly diagnosed person may evolve with and beyond cancer.”
  • Lesson 5. “Stigma is devastating, and we must help our patients overcome it. Cancer has been a source of stigmatization for decades. While the situation has improved, there are still instances of stigmatization due to a cancer diagnosis. For example, consider this question: ‘Should a smoker be treated differently than a nonsmoker with lung cancer?’”

Partnering With Patients Is Crucial

Dr Winer stressed that patients must be an integral part of the healthcare team, since they are experts on how they are feeling on a moment-to-moment basis. When patients and families are involved in the decision-making process, adverse events are fewer, and outcomes are better. He added that building stronger partnerships with patients can also address inequities in access to care.

“In a physician–patient partnership, it is imperative that we address people faced with disparities—minorities, the LGBTQ populations, and those with mental health problems. It may be more difficult to form relationships with these groups, but this is indispensable to forming partnerships and overcoming disparities,” Dr Winer stated.

“Partnerships are crucial for the well-being of oncologists. The physician–patient partnership strengthens us and helps address burnout. We need to reduce the unnecessary tasks that abound in our work lives, including regulations, paperwork, and other requirements,” he added.

“Being an oncologist has been an essential part of my life—it is hard for me to imagine any more rewarding career. I hope I have conveyed why I feel so deeply about the relationships we have with our patients, and what those relationships can mean to patients and to each of us,” Dr Winer concluded.

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Last modified: July 26, 2023