Richard R. Rubin, PhD: An Ambassador for Behavioral Science in Diabetes

Richard Roy Rubin, PhD, (“Dick” to many of his friends) was born in Lima, Peru, to Goldie (Possoff) and Morton Rubin. Goldie attended Temple University, while Morton attended Penn State and Massachusetts Institute of Technology (MIT), where he specialized in southern hemisphere weather. Morton’s job of forecasting weather for Pan American-Grace Airways (Panagra) afforded the young couple the opportunity to relocate several times in their early years. They were living in Lima when Richard was born in 1943 and in Santiago, Chile, when Richard's brother John was born in 1946. It was back to the U.S. (Waltham, MA) in 1948, where sister Mary Sue was born the following year. The now-complete family moved to Pretoria, South Africa, in 1954. Mary Sue relates that one of Richard's favorite memories was when Morton took the boys to Kruger National Park, about 250 miles from Pretoria, where they slept in thatched huts and listened to lions, hyenas, and other wildlife throughout the night. Though Morton and Goldie were of Lithuanian and Ukrainian descent and spoke English and Yiddish, all the family members became quite fluent in Spanish during their years in South America. The family came back to the U.S. in 1955 and eventually settled in Bethesda, MD, in 1959.

That same year, after 16 months of research in Antarctica, Morton Rubin arrived home to find his 9-year-old daughter in the hospital with a diagnosis of type 1 diabetes. Richard remembered it as a devastating blow to the family (Mary Sue was the first in her extended family to be diagnosed with the disease [1]). Mary Sue’s diagnosis, and later Richard's own son’s diagnosis, would be reason enough to turn his career path to the field of diabetes. In 1961, Richard moved to Baltimore to attend Johns Hopkins University (JHU).

Initially, his career path did not involve diabetes. He received his BA in history with honors, was inducted into Phi Beta Kappa, and received his doctorate in social relations (now sociology) at JHU. He spent his entire academic career (with the exception of a semester at the University of California, Berkeley with his mentor) at JHU, starting as an assistant professor of social relations and of psychiatry and ending as a full professor of medicine and of pediatrics. Of all his many accomplishments, he was proudest of the latter.

Richard R. Rubin was to become an iconic figure in the field of diabetes.

Mary Sue’s diagnosis and then the 1979 childhood diagnosis of his 7-year-old son, Stefan (with whom he later coauthored a book on diabetes [2]), was part of the transformative process through which Richard committed his career to helping people with diabetes, leaving his academic position for private practice. When we first met, his primary professional role was as a licensed clinical professional counselor specializing in counseling adults with diabetes and their family members. Because his doctorate was not from an accredited psychology program, many insurance companies would not reimburse clients for his services, and clients had to pay out of pocket. Nevertheless, he maintained a viable client population through word of mouth of clients and diabetes care providers about his ability to help people who were unable to get elsewhere what they needed to be able to live well with diabetes.

Partly because of the vagaries of health care coverage in the U.S. and partly because of Richard’s desire to reach larger populations of people in need, he essentially created a new career niche for public psychosocial outreach regarding diabetes, touring as a motivational speaker in conjunction with his groundbreaking book Psyching Out Diabetes: A Positive Approach to Your Negative Emotions (3) (later republished in multiple editions). He was widely sought after as a speaker, again mostly through word of mouth, giving talks at hundreds of meetings of patients, family members, and diabetes care providers in 48 states and many countries. People would wait in lengthy queues to share a few moments with him and receive a signed copy of his book. Not only was he an inspiration to them but also it was inspiring to hear the personal tributes they would give him. Richard often noted that he felt he learned something from others at every talk he gave.

Although Richard was clearly an expert in the psychosocial aspects of diabetes, what made him so successful as a speaker was his personal understanding of what it was like to live with diabetes and his use of personal experience in living with diabetes as core features of his talks. Many who heard his talks could recount the stories he told to illustrate his points, e.g., the childhood diabetes of his sister before the development of modern diabetes care and the childhood diabetes of his son in the modern era. Many know these key figures in Richard’s life through the stories that he shared during his talks. People with diabetes and their loved ones could find themselves in the stories he told about issues faced and lessons learned.

Thousands came to know Richard through his talks, whereas others came to know him through his numerous lay-oriented periodical publications in newsletters and websites, such as Diabetes Self-Management and dLife. Mixing insights based on psychosocial research and clinical experience with those derived from his personal experience, Richard touched many. When diagnosed with cancer, he brought that to his columns and shared his experience of living with the fears and burdens of the disease that would eventually end his life. As a public scholar, nothing was too personal to share with those who might benefit from hearing how someone else dealt with their struggles.

I first met Richard in 1985 when I moved to Baltimore and reached out to the major medical schools in the area to identify potential colleagues in behavioral/psychosocial diabetes research. There was no such person on faculty at either institution, but Richard was identified as a psychologist working on the staff of the patient education program at the Johns Hopkins Comprehensive Diabetes Center. We had a lunch meeting and then spent 2 h afterward sitting in his convertible (he loved convertibles) talking about his first diabetes research project (funded by the Diabetes Action Research and Education Foundation) that had just started and my own diabetes research. At several points in our conversation, we discovered amazing commonalities and exciting synergies. By the end of that conversation, we had established a relationship as friends and colleagues that would last the remaining 25+ years of his life.

Richard’s most direct influence on those affected by diabetes was through his counseling with, talks to, and publications for those affected, but he may have had a broader influence on those people through his communications with diabetes care providers. He was an early proponent of personalized, person-centered care, and his stories describing how he was able to help people who were unresponsive to traditional care strategies often helped health care providers see how they could be more effective by dealing with the person behind the disease. For over a decade until near the end of his life, he was a core faculty member for the Endocrine Fellows Foundation and the Endocrine Fellowship Program. In combination with grand rounds and continuing education workshops, these activities allowed him to share not only his therapeutic philosophy but also concrete interactional and clinical strategies for its implementation. When he won the American Diabetes Association (ADA) Outstanding Educator in Diabetes Award in 1997, it was a tribute to his skill at educating providers, as well as people with diabetes.

Although more people probably knew Richard through his public scholarship, most readers of this journal probably know him through his academic writings. Although it is difficult to come up with a definitive list of his publications, I know that we coauthored about 150 publications and he had numerous publications with other colleagues. He authored or edited seven books about diabetes, four in multiple editions, and four published by ADA or American Association of Diabetes Educators (AADE) (2–8). As one might expect from his nontraditional career, Richard was a Renaissance man whose writings reflected an interest in all psychosocial aspects of diabetes. His research interests included, inter alia, patient-reported outcomes of medications and medication delivery systems (9–13), correlates of adherence (14–17), diabetes self-management education (DSME) (18–21), behavioral interventions (22–27), diabetes–depression comorbidity (28–31), and diabetic neuropathy and foot ulcers (32,33). In addition to literature reviews and original research, he was a developer of several instruments to assess the patient experience of living with and managing diabetes (11,33,34).

Richard made significant contributions to research through his involvement in major National Institutes of Health–funded projects, including the Diabetes Prevention Program (DPP), DPP Outcomes Study (DPPOS), and the Look AHEAD (Action for Health in Diabetes) trial. As coinvestigator at JHU of the DPP/DPPOS, he was chair of the recruitment committee and the retention committee and a member of the steering committee and the protocol oversight committee, as well as a collaborator on publications (e.g., 35). As coprincipal investigator at JHU of the Look AHEAD trial, he was chair of the committee overseeing the protocol and a member of the recruitment and retention committee and the steering committee, as well as a collaborator on publications (e.g., 31). As coinvestigator on the Practice-based Opportunities for Weight Reduction (POWER) trial, he collaborated in developing and implementing the intervention and authoring publications (e.g., 27). He also served as coprincipal investigator on foundation-funded grants, including a large project funded by the AADE Education and Research Foundation to study access to DSME (e.g., 21) and a project jointly funded by ADA and Diabetes UK (e.g., 32,33).

In addition to his critical and leadership roles on these major research projects, Richard was a consultant and trusted advisor to numerous diabetes industry partners. He was influential in stimulating psychosocial research by these companies, devising plans for studies, and helping to create opportunities for others in the behavioral diabetes research community, including the Diabetes Attitudes, Wishes and Needs (DAWN) study, where he was a key figure on the advisory board that planned the study and later collaborated on most of the publications from that study (e.g., 15,25). He was also a participant in the Sensor-Augmented Pump Therapy for A1C Reduction (STAR 2 and STAR 3) trials and collaborated on several articles (e.g., 13). He was involved in planning and research to bring to market an inhaled insulin (AFREZZA), and collaborated on several related articles (e.g., 11,12). He received numerous other grants from companies to conduct research projects on what patients, caretakers, and health care providers wanted and how they were affected by products that companies did or might want to provide. He insisted that these projects be published in the research literature rather than being put on a shelf as proprietary reports and, in doing so, helped create an environment in which behavioral science was a necessary component of research on new diabetes treatments, even beyond that required by regulatory agencies.

Although a few eminent behavioral scientists have publication bibliographies that equal or surpass Richard’s, publications are not the defining characteristic of his professional life. With relatively few spectacular exceptions, diabetes research contributes incrementally to a larger body of knowledge that eventually impacts care for people affected by diabetes. Richard’s unique contribution was his leadership in developing the infrastructure that supports and catalyzes the efforts of others (individuals, companies, and organizations) to improve the lives of those affected by diabetes. I have alluded to several of these above, but they are only a fraction of what he accomplished in his role as ambassador for behavioral science in diabetes.

When I first knew Richard, he became chairman of the board of the Maryland affiliate of ADA (the top position available at that time to nonphysicians). He helped lead the affiliate in a process of strategic planning that increased funding for research and enhanced its diabetes summer youth camp facility/programs. When policy changed to permit nonphysicians to become president of the affiliate, Richard was the first nonphysician to serve in that position. He led the affiliate through a process of reorganization in which the affiliate sold its camp facility to generate funds for research and services and became regionalized at the national level. After rising to positions of prominence in the national ADA, he returned to a position at the local level, serving as the president of the Leadership Board in Maryland.

During the period between his early and late career positions of local ADA leadership, Richard occupied numerous national ADA leadership positions, including membership on the Diabetes Care and Diabetes Forecast Editorial Boards, the Scientific Sessions Committee, the Board of Directors, and the Health Care and Education Advisory Group. He served as chair of the Council on Behavioral Medicine and Psychology, the Committee on Professional Councils, and the Task Force on the Delivery of Diabetes Education and Medical Nutrition Therapy. He also served as President of Health Care and Education. In addition to organizational leadership during times of transition, he helped get federal funding for DSME and medical nutrition therapy (36), initiated a joint program of ADA and the American Psychological Association to train psychologists to work in diabetes, and facilitated the effort to establish guidelines for psychosocial care of diabetes (37). He and his longtime friend and colleague Barbara Anderson edited an ADA publication, Practical Psychology for Diabetes Clinicians: How to Deal With the Key Behavioral Issues Faced by Patients and Health-Care Teams (Practical Approaches in Diabetes Care) (5), and donated the proceeds of that publication to ADA for the purpose of creating what became the Behavioral Medicine and Psychology Distinguished Contributions Award.

Although ADA was Richard’s primary vehicle for volunteer leadership in diabetes, it was not the only one. He served as chair of the Centers for Disease Control and Prevention Translation Advisory Committee, as president of Behavioral Research in Diabetes Group Exchange, and as a session organizer/chair for the ADA, the International Diabetes Federation, and the European Association for the Study of Diabetes. He was a longtime faculty and advisory board member of Children with Diabetes, one of his true passions that derived from his experience in living with his sister’s and son’s childhood diabetes.

Richard also was a leader in the field of diabetes education. Within the AADE, he served as secretary, treasurer, and finance committee chair and on the national board of directors. He also served on the board of trustees and as secretary of the AADE Education and Research Foundation, as well as chair of the National Certification Board for Diabetes Educators (NCBDE). He contributed to the development of the NCBDE certification criteria and the core curriculum (7) and was one of the first people to become a Certified Diabetes Educator (CDE).

Richard’s contributions to diabetes in general and behavioral diabetes in particular have been well recognized. In terms of volunteer service, he received the Rachmiel Levine Medal for Service and the Josiah Kirby Lilly, Sr. Distinguished Service Award from ADA and the Friends for Life Distinguished Service Award from Children with Diabetes. In terms of practice, he was named by ADA as Outstanding Educator of the Year and was an awardee for the ADA Behavioral Medicine and Psychology Distinguished Contributions Award. I was proud to have nominated him for the latter award, and in closing can share a personal story about the award.

I was on the committee that established the award using the funds that he and Barbara Anderson had donated for that purpose. As he and I were initially discussing the award, I said that it would be appropriate to name it for a major figure in behavioral diabetes, much like several other ADA scientific awards, but that it would be best if named after someone who had passed on as a memorial and to avoid choosing among potential living namesakes. Given the relatively new status of behavioral science in diabetes, there was no obvious candidate who met those criteria. I suggested it might be named for the first truly eminent scholar in our field who died; he agreed that this was sensible. Ironically, after his cancer diagnosis and subsequent death, the award he had helped create and later received was named in his honor. Now the highest award that a behavioral scientist of diabetes can receive is the ADA's Richard R. Rubin Award, a fitting tribute to the man who did so much to make that award possible. I know this would have made him proud.

In addition to his professional exploits, Richard was a lifelong runner and often participated in ADA-sponsored races (and finished rather well).

Beginning in his early childhood, and continuing throughout his life, he loved spending time communing with nature. He had a house in the country where he would spend hours tending to the pond, stream, marsh, and trees; clearing paths; and planting. He would often walk with his two dogs and take exquisite pictures of plants and insects. Although he loved being alone, he was deeply sensitive to his incredible network of friends and would send out birthday greetings to a large number of close friends. One of Richard’s goals was to live long enough to see his sister receive the 50-year diabetes survivor award (38); she told him she was going to wait for the 100-year award!

On 25 March 2013, Richard lost his long battle with cancer. He is survived by his wife Karan Cole and children (Stefan, Kyra, Tyler, and Kelli), as well as his grandchildren (Brooks, Maizie, Branch, Ella, Hollis, Kai, Tatum, and Cicely) and siblings (John and Mary Sue). His memorial at the 2013 ADA Scientific Sessions was attended by many, including some of the most prominent figures in diabetes—presidents and executives of professional diabetes organizations and eminent researchers—as well as his many friends and colleagues from all fields and disciplines. Richard Rubin was a prolific researcher, a leader of diabetes organizations, a sought-after motivational speaker, an outstanding clinician and mentor to diabetes care professionals, a valued colleague/collaborator, a trusted advisor, and a beloved friend/brother/husband/father. When his family held a memorial service in his hometown of Baltimore, people who knew him professionally flew in from all over the country and drove from the local area to attend and have an opportunity to share their memories, not of his numerous accomplishments, but of what Richard meant to them.