My Moral Compass: Kenneth Youngstein on Advancing Communication in Health Care

The fate of anything relies heavily on its messaging.

Perhaps nowhere is this more evident than in health care. The decisions behind seeking treatment depend on a complex combination of knowledge and personal beliefs. A medication's success depends on an understanding of how to take it. A surgery's benefits weigh on the patient's knowledge of how to best prepare and heal. It is there, in communication, that the impact lies.

Illuminating the importance of communication is central to the work of Kenneth Youngstein. For nearly fifty years, Ken has traversed the globe working to enhance the conversation between healthcare professionals and patients. He's worked throughout Africa, the Middle East, Europe, North and South America, and Asia arguing for clearer health care messaging and creating impactful educational tools, each designed to be appropriate to local cultures and healthcare systems.

Ken, who is jovial and enthusiastic, describes how he was drawn to work in the field of health education. "Looking at this interplay between society and medicine was so intriguing," he tells us over a video interview from his home in Zurich. Behind him is a colorful array of books, photos, and art pieces. Two shiny guitars sit in the corner. It's an eclectic mix evident of a deeply storied person. We're catching Ken on a rare pause from global travel as he (and the world) stays put in the face of COVID-19. He converses with such an intention and warmth, it translates through the computer screen, making you feel like you're sitting next to him in his study. This principle saturates everything he does. "I'm the ultimate non-multitasker," he says. "I'd rather do one thing correctly than do forty things half-assed."

Born in New York City in 1948, while still in grade school, Ken moved with his family to Florence, Italy. At age sixteen, he began university in England, studying experimental psychology. It was then that he first became interested in communication and how it "serves as the glue that binds, or separates, individuals and groups," he says. His focus, however, was not humans, but our closest relatives, primates.  In 1967, at the age of nineteen, beginning his doctoral studies, he headed to the Budongo Forest in Uganda to study communication in chimpanzees. But beyond the calm of the forest, war was raging in Vietnam. The US military did not consider "chimp researcher" to be a draft-deferrable job, so it ordered Ken to return to the States. Fortunately, he was not drafted and was allowed to continue his studies at the Yerkes Primate Center in Atlanta.

In time, Ken realized he wanted something different from his studies. "Psychology asked mostly the question, what," he says. "And I was much more interested in the why." This inclination to study behavior led him to switch to the emerging field of neuroscience. But just when he thought he was out of the forest, he was pulled back in. This time, it was to help the New York Blood Center build a virus research lab in response to the emergence of Hepatitis B and C. The only animal model for this research was chimps, who if exposed to Hepatitis develop an antibody reaction similar to humans, but do not get sick. The chimps would be humanely captured, used for a short time, and then released into protected areas.  At twenty-five, accompanied by his wife and his Irish wolfhound, Ken headed to Liberia.  

As part of his deal with the Liberian government, the lab would include a small clinic to serve the local population. Ken spent considerable time watching how the care providers, an aging American missionary doctor and his team of local nurses and technicians, interacted with their patients. He witnessed the challenges of communication, and how various intricacies—multiple languages, cultural beliefs, and life circumstances—had to be considered. How can you discuss the importance of taking antibiotics with someone who believes her illness is due to a curse?  How do you convince a person to return to the clinic for a follow-up visit when they must travel hours by boat and bicycle to get there? 

After two years in Africa, Ken returned to New York to learn that the Blood Center had established a program to coordinate the recovery and distribution of organs. In 1974, the US government began its first attempt at catastrophic health coverage by extending Medicare to cover the costs of dialysis and kidney transplantation. This resulted in a boom in the opening of dialysis and transplant programs. A concept that is key to organ donation is brain death, the total and irreversible loss of brain function.  This novel approach to declare death required someone to educate the medical community. With his background in neuroscience and his growing interest in healthcare delivery, Ken took on the assignment. 

At first, his role was to help establish firm medical guidelines to promote among the medical community. But soon it became clear that brain death and all of organ donation "wasn't just a medical problem, it was also a legal problem," he says. They crossed legal, cultural, religious, and ethical boundaries. Ken began working with legislatures to develop laws recognizing brain death and smoothing barriers to recovery and distribution of organs.  During the course of this, he researched all existing laws and wrote the first book, detailing the remarkable range of laws across the fifty states and internationally. He worked with religious leaders, from the Vatican to the Board of Rabbis, explaining the medical aspects of brain death and the donation process.

Even with a legal definition of brain death and the newly introduced organ donor cards, clinicians had great difficulty convincing families to donate the organs of deceased loved ones. Ken began to sit in on these discussions. The messages that the doctors delivered were unclear and confusing. They often reflected the professional's own ambiguity about this complex process and rarely honored each family's unique blend of education, religious beliefs, dynamics, and circumstances.  In response, Ken developed programs to train hospital staff how to better communicate with patients. These programs were endorsed by the leading neurosurgical organizations and incorporated into the residence programs throughout the US.

During the course of his work, Ken often interacted with transplant patients. He found that they were provided with little information beyond the "take these pills each day, at these times, and come to the clinic for tests," he says. There was no discussion about emotional issues, sex, or any of the challenges of managing a lifelong effort to avoid possible infection and rejection. In his role as Chairman of the Education Committee of the Association of Organ and Tissue Banks, Ken asked all the organ transplant programs around the US how they were educating their patients. A review of their educational materials showed that they provided information about hotels, restaurants, and transportation services around the hospital, but little to nothing on pre, peri, and post-operative care or long-term issues. "It was endemic of the whole framework of things," Youngstein says. "Doctors were fixers, they weren't communicators." With the support of the Blood Center and other emerging organ banks and hospitals, Ken began developing educational programs for patients. This started as print-based pamphlets, then evolved into automated slide presentations, and eventually films.

As the technologies expanded, so did the costs of production. The US government was covering the cost of care, but there was no line in the budget for patient education. In 1978, Ken headed to Washington to make his case, expecting strong resistance. To his surprise, Congress agreed within a few minutes. This resulted in allowing each transplant program to include a charge for patient education. The heads of the transplant hospitals in the US realized that they knew little about patient education—and they were already using many of Ken's programs. They asked Ken to leave the Blood Center, set up his own company. and provide them with the educational programs they would need.  With that, Biocom Ltd., his biomedical communications company, was born.

In 1981, a new chapter emerged. The large pharma company Sandoz (now a part of Novartis) was introducing a breakthrough medication to prevent rejection of transplanted organs. Being new to the field of transplantation, the company sought the counsel of Ken, who recommended an aggressive program of professional and patient education. His suggestions were initially met with skepticism, but eventually, with encouragement from the transplant community, the pharma company agreed. Soon, Sandoz was providing educational materials to every transplant hospital in the US and even Europe.

A year later, after giving a presentation about health education, Ken was approached by a Chinese woman who told him that now that the cultural revolution had ended, her country was facing enormous challenges to rebuild its medical education system. She asked Ken to come to Beijing and serve as an advisor in the Ministry of Health. For the next three years, Ken would split his time between New York and the Chinese capital.

International projects, many on a pro bono basis, soon became a significant part of Ken's life. The Minister of Health of Sikkim in India asked him to develop a way to teach local villagers about eye health. The challenge was to find a way to affordably deliver these messages without skilled educators, in ways that were appropriate to local languages and cultures. Many local men were working in the Middle East and returned with large audio cassette players (aka boomboxes) that included built-in microphones and recording capabilities. Ken used the boomboxes to develop a mixed media presentation. He created a large flip chart book for which he had the local school kids color the images and other locals to record the accompanying narration. It was scrappy, fun, and highly effective.

Throughout the 1980s the healthcare field began to see the value in professional, patient, and public education. With that, Biocom's work grew to include film production for channels in the US and UK. But work in the developing world was never abandoned. In 1990, Kuwait had a new transplant hospital—a gift from a Sheik who was grateful for his new kidney—but no organ donors, despite a very high rate of accidents. The nation asked for Ken to come over to identify and help with the issues. He soon discovered that all the kidney specialists in Kuwait were from India, and were actively suppressing local donors, thereby ensuring that all transplant patients be sent to their country to be transplanted. (The kidney specialists received a generous referral fee.) Once the problem was identified, the Ministry instituted a referral fee for all patients that remained in Kuwait to be treated at the new hospital.  Suddenly, there were plenty of local donors and Ken helped to develop a proper donor program that included efficient training. This required him to remain in Kuwait for longer than he had anticipated. One morning in 1990, Iraq invaded and Ken fled for Zurich. He moved Biocom to the Swiss city shortly after—and he has called it home ever since.

In the ensuing years, Ken continued working with healthcare companies throughout the world, specializing in international core programs that could be adapted for local markets. The tools Biocom offered grew to include computer and web-based technologies. 

The year of 2012 unveiled an important phase of Ken's work. He began working with Orbis, the international NGO that works to fight avoidable blindness in developing countries around the world. Working with the Orbis office in South Africa, Ken developed training tools for local people to go out into the villages to help them promote eye screening. 

At the same time, Ken and his partner, Ingrid, were also supporting Room to Read, a charity that builds libraries in developing countries and publishes illustrated children's books in local languages—something that was non-existent in these places. Ken saw a way to merge his work with Orbis and Room to Read and proposed a book about a child with a vision problem. Writing the text and working with a South African illustrator, Ken produced The Singing Tree. It tells the story of a young girl who suffers from reduced vision. Rejected by her friends, she sits alone under a large tree, unable to see the birds above. She believes that the tree sings songs to her. When her mother brings her to the clinic to get glasses, the little girl’s world expands. The story is inspired by Ken's experience when he received his first pair of eyeglasses at age five. His mother told him that as they left the optician, he looked up and shouted, " Mommy. Mommy, look… birds."

The project began in South Africa, with versions of the The Singing Tree being produced in six local languages. Then came Zambia, Cameroon, Ghana, and Ethiopia. In each case, changes were made to the text and illustrations to reflect local customs and languages. As word spread throughout the Orbis network, the project expanded to India, Nepal, Myanmar, Peru and Bolivia. In each country, Orbis (with the help of local partners) distributes the books to schools and eye clinics. Teachers are encouraged to read the book with their students. When the Orbis team visits the schools to test the children's eyes, any child identified as needing glasses is given a copy of the book to take home to read with their parents. "One book educates so many levels of stakeholders in eye care," says Ken. To support this effort, Ken and Ingrid created The Foundation for Health & Mind Development, which funds the production and distribution of the educational materials.

Ken's other projects with Orbis includes The Eye Book, a continuation of his career-long conversation about impactful communication. This illustrated book helps eye care professionals discuss the full range of eye diseases with patients and their caregivers. Using simple talking points, original illustrations, and real-world analogies, the book helps patients understand the nature of their illness, the treatment options, and care process.  There is an elemental need "to put this whole complex world about communication into a practical way that makes sense" to people, Ken says. As much as it uncovers the why, The Eye Book also uncovers how to treat patients and the trust and integrity the small acts, such as making eye contact, unveils.  "If you want patients to trust you, you have to show them respect," he says.

At seventy-two, Ken says he is "more or less" retired from Biocom and his main communications work, but one could argue otherwise.  When this interview took place, he was supposed to be traveling to Ghana and India to run training workshops in tandem with The Eye Book but the current coronavirus crisis has put a hold on those plans. This moment in history catches Ken during a seemingly rare moment of downtime. And it presents the perfect opportunity to ask him about his motivation over the past several decades. Was he consistently driven by the need for better communication? Or was it something beyond that?

Ken answers with palpable gratitude. " It becomes so reinforcing," he says. "When you go to Myanmar, to Ethiopia, and to [all] these places and you work with the local people and see the response from these young nurses and doctors, and the patients, it's addictive."