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Pediatric Endocrinology Nursing Society 20th Anniversary
PEDIATRIC
PENS NEWS Column Editor: Kelly Mullholand Behm, BS, RN
ENDOCRINOLOGY NURSING SOCIETY
Pediatric Endocrinology Nursing Society 20th Anniversary Kathy Clark, MSN, RN, PNP
U
P UNTIL 1986, there was no nursing organization specific to pediatric endocrinology. In that year, a rare opportunity presented itself with the advent of clinical trials for growth hormone. Pharmacy trials had begun for this newly synthesized hormone, always in short supply when available only as a cadaverharvested hormone. When the clinical trials began, nurses were in place as study coordinators—a new frontier, with all the elements that pediatric nurses enjoy—intellectual challenge, family-based care, longterm relationships with children, and role expansion. Virtually no nursing literature existed at that time for the diagnoses that were seen in pediatric endocrine clinics. Most conditions did not require hospitalization, with the exception of the rare newborn with congenital adrenal hyperplasia. While pediatric diabetes professionals enjoyed a variety of local and national programs and professional groups (e.g., American Diabetic Association, American Association of Diabetes Educators, and Juvenile Diabetes Association) and pediatric endocrinologists had their own organizations (e.g., Lawson Wilkins Society, Endocrine Society, and American Association of Clinical Endocrinologists), endocrine nurses had no means of connection to one another. At a 1986 clinical trials startup meeting for the physicians and study coordinators, I discovered a group of nurses who had interests similar to mine. I had colleagues at last! We all agreed that we had to find a way to share experiences and knowledge about the nursing care that our patients needed. Data entry and clinical trials were not our passion, but we acknowledged that these job responsibilities brought us together for the first time. Eli Lilly Company, the meeting sponsor, recognized the potential of this group and agreed to
Journal of Pediatric Nursing, Vol 22, No 5 (October), 2007
provide resources and assistance to reach out to all the nurse/study coordinators. Similar trials were underway through Genentech, and they were equally eager to help the group develop, providing support from the beginning. We sent a letter asking for help in organizing a nursing organization, mailed to 85 nurses identified as clinical trial coordinators. Within months, a planning group of 16 nurses, complete strangers to one another, met in Chapel Hill to begin the groundwork of forming a professional association. The group included a PA and a nurse from Canada. These members came from all over North America, some from very prestigious pediatric endocrine programs and others from solo or private practices. All levels of education and experience were represented, which proved to be invaluable as we forged ahead. We considered affiliating with several physician groups or perhaps another nursing organization but chose instead to be independent. Bylaws from many organizations were collected and analyzed; the Oncology Nursing Society had the structure we sought, and our initial bylaws reflected this. We were incorporated by an attorney, had our letterhead printed, and held our first election within a year. Most of the first mailings were hand stamped, with envelopes stuffed by my young daughter. There were no computers at that time, so mailing lists were typed by one of us and photocopied onto labels. Members were warned to use the shortest address possible. In 1986, few nurses had been exposed to the affluence of the pharmacy world; meetings with lavish
0882-5963/$ - see front matter doi:10.1016/j.pedn.2007.08.008
425
426
buffets, luxury hotels, and gifts were heady stuff indeed. With two drug companies vying for our attention and worries that monetary support could taint our behavior, hours were spent carefully weighing the cost of accepting help. The exceptionally high price of growth hormone presented a dilemma; how much financial support could we accept, knowing the burden that this drug placed on the cost of health care in our countries? Would acceptance of this support in any way create a bias toward prescribing or treating more patients? How could we avoid any appearance of favoring one company over another, and how could we afford to turn down generous offers? Each decision was hotly debated, and our novice board did the best we could to be mindful of patients first and our professional needs second. Serono Symposia handled our conferences for many years. Our first conference was held just 13 months after our first mailing. There were 10 lectures offered, and four speakers were also on board (essential to keeping the costs low). The topics at that first meeting could still be offered today, and I recall that the quality was top notch— we worried how we could reproduce that level of professionalism year after year. The response was immediate, and attendance overwhelmed our expectations. There was no question of our future; the need was clear, and volunteers were abundant. The first edition of the PENS (Pediatric Endocrinology Nursing Society) Reporter was printed in the winter of 1988 and mailed to 124 nurses. The organization began with an elected board, a policy manual, bylaws, and pharmacy/industry guidelines. We had committees for research, education, conference planning, and the newsletter. All of the day-to-day work were handled by board members, without support staff or even the assistance of our own office staff. When I am asked how this group developed so quickly and with such strength, it is clear that the early group was something special. Diverse interests, backgrounds, and education levels were there, but with a clear vision about the mission of creating a highly professional organization. The board members were all experienced nurses with independence in their roles and had already laid groundwork for sharing their skills. I believe this was the secret to our success—a balanced board, a passion for the cause, and unity without homogenization. We were on fire. The PENS has never been an “American” organization as the committees and attendees have always included a very active Canadian contingent. Most of
KATHY CLARK
the first PENS conferences were attended by nurses from around the world. There were nurses in Europe and Australia who also craved the interaction and unique perspectives of other nurses. Similar groups developed in the European Union and Australia; an adult endocrine nurses group also formed. One early decision, revisited many times over the years, was on the limitations we placed on nurses who work in the pharmacy industry. There were such intense rivalries between our funding companies that we felt this was needed to avoid any appearance of favoritism. We feared that allowing a nurse who worked for Genentech, for example, to be our president, would create deep divisions and acrimony from the competing companies. This decision was most painful as we saw many of our finest nurses expand their careers into industry and become ineligible to run for office. However, industry support never flagged. Our physician colleagues also helped recruit new nurses to the fold. It is considered essential to some that their nurses belong to the PENS. Some of the doctors that I work with have even been amused to be identified not by their own accomplishments but as “Kathy Clark's doctor”. We now identify centers of excellent care not just by the physician but also by the nurse expert. When we began the PENS, it was for one unifying purpose: to provide the finest nursing care possible to children with endocrine disorders. The PENS has come to mean much more to many people—a source of friends, a way to obtain contact hours, and opportunities to travel and have fun. The burden of improving one's own nursing ability, however, lies with each member, not with the organization. By soaking up the culture of experts, any nurse can begin to define what it is that we offer and meet the needs of our patients and families. It has been my privilege to be there from the beginning. My patients have benefited; it has enriched my life to have these amazing colleagues and to be able to mentor others. Our mission statement reflects the advancement of the “art and science” of nursing, and this indeed has been made manifest in the PENS in 2007.
Steering committee 1986 Dottie Doolittle, RN, PNP Marcia Scott, RN Belinda Pinyerd, MS, RN Darlene Biggs, MS, RN, PNP Mary Carbone, RN Susan Wesoly, PA Rosemarie Klipper, RN Patti Reiser, RN, FNP Jan Penn, RN Joy Graham, RN Rachel Jorgensen, MS, RN Angela Notorfrancesco, RN Nita Marie Bedocs, BSN, RN Francine Kearns, RN Bev Giordano, MN, RN Kathy Clark, BSN, RN
PENS NEWS Column Editor: Kelly Mullholand Behm, BS, RN
ENDOCRINOLOGY NURSING SOCIETY
Pediatric Endocrinology Nursing Society 20th Anniversary Kathy Clark, MSN, RN, PNP
U
P UNTIL 1986, there was no nursing organization specific to pediatric endocrinology. In that year, a rare opportunity presented itself with the advent of clinical trials for growth hormone. Pharmacy trials had begun for this newly synthesized hormone, always in short supply when available only as a cadaverharvested hormone. When the clinical trials began, nurses were in place as study coordinators—a new frontier, with all the elements that pediatric nurses enjoy—intellectual challenge, family-based care, longterm relationships with children, and role expansion. Virtually no nursing literature existed at that time for the diagnoses that were seen in pediatric endocrine clinics. Most conditions did not require hospitalization, with the exception of the rare newborn with congenital adrenal hyperplasia. While pediatric diabetes professionals enjoyed a variety of local and national programs and professional groups (e.g., American Diabetic Association, American Association of Diabetes Educators, and Juvenile Diabetes Association) and pediatric endocrinologists had their own organizations (e.g., Lawson Wilkins Society, Endocrine Society, and American Association of Clinical Endocrinologists), endocrine nurses had no means of connection to one another. At a 1986 clinical trials startup meeting for the physicians and study coordinators, I discovered a group of nurses who had interests similar to mine. I had colleagues at last! We all agreed that we had to find a way to share experiences and knowledge about the nursing care that our patients needed. Data entry and clinical trials were not our passion, but we acknowledged that these job responsibilities brought us together for the first time. Eli Lilly Company, the meeting sponsor, recognized the potential of this group and agreed to
Journal of Pediatric Nursing, Vol 22, No 5 (October), 2007
provide resources and assistance to reach out to all the nurse/study coordinators. Similar trials were underway through Genentech, and they were equally eager to help the group develop, providing support from the beginning. We sent a letter asking for help in organizing a nursing organization, mailed to 85 nurses identified as clinical trial coordinators. Within months, a planning group of 16 nurses, complete strangers to one another, met in Chapel Hill to begin the groundwork of forming a professional association. The group included a PA and a nurse from Canada. These members came from all over North America, some from very prestigious pediatric endocrine programs and others from solo or private practices. All levels of education and experience were represented, which proved to be invaluable as we forged ahead. We considered affiliating with several physician groups or perhaps another nursing organization but chose instead to be independent. Bylaws from many organizations were collected and analyzed; the Oncology Nursing Society had the structure we sought, and our initial bylaws reflected this. We were incorporated by an attorney, had our letterhead printed, and held our first election within a year. Most of the first mailings were hand stamped, with envelopes stuffed by my young daughter. There were no computers at that time, so mailing lists were typed by one of us and photocopied onto labels. Members were warned to use the shortest address possible. In 1986, few nurses had been exposed to the affluence of the pharmacy world; meetings with lavish
0882-5963/$ - see front matter doi:10.1016/j.pedn.2007.08.008
425
426
buffets, luxury hotels, and gifts were heady stuff indeed. With two drug companies vying for our attention and worries that monetary support could taint our behavior, hours were spent carefully weighing the cost of accepting help. The exceptionally high price of growth hormone presented a dilemma; how much financial support could we accept, knowing the burden that this drug placed on the cost of health care in our countries? Would acceptance of this support in any way create a bias toward prescribing or treating more patients? How could we avoid any appearance of favoring one company over another, and how could we afford to turn down generous offers? Each decision was hotly debated, and our novice board did the best we could to be mindful of patients first and our professional needs second. Serono Symposia handled our conferences for many years. Our first conference was held just 13 months after our first mailing. There were 10 lectures offered, and four speakers were also on board (essential to keeping the costs low). The topics at that first meeting could still be offered today, and I recall that the quality was top notch— we worried how we could reproduce that level of professionalism year after year. The response was immediate, and attendance overwhelmed our expectations. There was no question of our future; the need was clear, and volunteers were abundant. The first edition of the PENS (Pediatric Endocrinology Nursing Society) Reporter was printed in the winter of 1988 and mailed to 124 nurses. The organization began with an elected board, a policy manual, bylaws, and pharmacy/industry guidelines. We had committees for research, education, conference planning, and the newsletter. All of the day-to-day work were handled by board members, without support staff or even the assistance of our own office staff. When I am asked how this group developed so quickly and with such strength, it is clear that the early group was something special. Diverse interests, backgrounds, and education levels were there, but with a clear vision about the mission of creating a highly professional organization. The board members were all experienced nurses with independence in their roles and had already laid groundwork for sharing their skills. I believe this was the secret to our success—a balanced board, a passion for the cause, and unity without homogenization. We were on fire. The PENS has never been an “American” organization as the committees and attendees have always included a very active Canadian contingent. Most of
KATHY CLARK
the first PENS conferences were attended by nurses from around the world. There were nurses in Europe and Australia who also craved the interaction and unique perspectives of other nurses. Similar groups developed in the European Union and Australia; an adult endocrine nurses group also formed. One early decision, revisited many times over the years, was on the limitations we placed on nurses who work in the pharmacy industry. There were such intense rivalries between our funding companies that we felt this was needed to avoid any appearance of favoritism. We feared that allowing a nurse who worked for Genentech, for example, to be our president, would create deep divisions and acrimony from the competing companies. This decision was most painful as we saw many of our finest nurses expand their careers into industry and become ineligible to run for office. However, industry support never flagged. Our physician colleagues also helped recruit new nurses to the fold. It is considered essential to some that their nurses belong to the PENS. Some of the doctors that I work with have even been amused to be identified not by their own accomplishments but as “Kathy Clark's doctor”. We now identify centers of excellent care not just by the physician but also by the nurse expert. When we began the PENS, it was for one unifying purpose: to provide the finest nursing care possible to children with endocrine disorders. The PENS has come to mean much more to many people—a source of friends, a way to obtain contact hours, and opportunities to travel and have fun. The burden of improving one's own nursing ability, however, lies with each member, not with the organization. By soaking up the culture of experts, any nurse can begin to define what it is that we offer and meet the needs of our patients and families. It has been my privilege to be there from the beginning. My patients have benefited; it has enriched my life to have these amazing colleagues and to be able to mentor others. Our mission statement reflects the advancement of the “art and science” of nursing, and this indeed has been made manifest in the PENS in 2007.
Steering committee 1986 Dottie Doolittle, RN, PNP Marcia Scott, RN Belinda Pinyerd, MS, RN Darlene Biggs, MS, RN, PNP Mary Carbone, RN Susan Wesoly, PA Rosemarie Klipper, RN Patti Reiser, RN, FNP Jan Penn, RN Joy Graham, RN Rachel Jorgensen, MS, RN Angela Notorfrancesco, RN Nita Marie Bedocs, BSN, RN Francine Kearns, RN Bev Giordano, MN, RN Kathy Clark, BSN, RN