Training the Next Generation of Pediatric Nephrology Advocates: The John E. Lewy Foundation Advocacy Scholars Program H. William Schnaper, MD1, Kathryn Schubert, MPP2, Sharon A. Perlman, MD3, Stephanie L. Clark, MD4, David S. Hains, MD5, Jesse L. Roach, MD6, Amy L. Skversky, MD7, John David Spencer, MD8, Tamar Springel, MD9, Sarah J. Swartz, MD10, Victoria F. Norwood, MD11, and Lisa M. Satlin, MD12
T
he John E. Lewy Foundation for Children’s Health (JELF) and American Society of Pediatric Nephrology (ASPN) have collaborated in an Advocacy Scholars Program to provide training in advocacy techniques and issue content relevant to pediatric nephrology, mentored experience in advocacy, and opportunities to develop ongoing relationships with government officials. JELF was created in 2009 by the Lewy family in remembrance of Dr Lewy’s dedication to pediatric nephrology, advocacy, science, and education. Dr Lewy served as president of ASPN in 1981 and received the ASPN Founder’s Award in 2000. From its inception, JELF set as its highest priority the promotion of advocacy related to pediatric kidney disease. Founded in 1969, ASPN also prioritizes advocacy in its mission and serves pediatric nephrologists and affiliated healthcare professionals, promotes optimal care, disseminates advances in research, and is the primary representative of the pediatric nephrology community in North America. Given the value of experience and personal contacts in accomplishing policy initiatives, a small number of ASPN members were repeatedly called upon for their service. ASPN and JELF sought to expand this group by engaging newer members of the Society in advocacy.
Scholar Selection A competitive, annual application process was developed for interested ASPN members. All applications (Table I; available at www.jpeds.com) are considered, with priority accorded to candidates within 10 years of completing fellowship training to maximize the benefit of the training to both the applicant and ASPN. Consideration is given to diversity of background and goals, demonstrated interest in public policy and advocacy, area of anticipated advocacy focus, and potential impact of the training on the applicant’s career. Each year, 2-3 Scholars are selected from among the applicants. Applicants must agree to participate in all elements of the 2-year Scholars Program and, subsequently, in ASPN advocacy efforts. The 25 applications received in the first 4 years of the program
AAP ASPN JELF NIH
American Academy of Pediatrics American Society of Pediatric Nephrology John E. Lewy Foundation for Children’s Health National Institutes of Health
represented 23 individuals (7 men, 16 women), 29-50 years of age (median 35); from 13 states, the District of Columbia and 1 foreign country; with experience ranging from first-year fellows to full professors.
Training Program The 2-year program includes didactic instruction in legislative skills and closely mentored practical experience with senior leaders of ASPN and its Washington representative. Scholars attend a 3-day American Academy of Pediatrics (AAP) Legislative Conference, where they receive training in governmental affairs, health policy advocacy skills, and crafting an effective message. They visit members of Congress in an “AAP Hill Day” to promote child health issues. The AAP experience is supplemented by an additional, 1-day didactic session provided by ASPN’s Washington representative and ASPN advocacy leaders. This program focuses on issues specific to pediatric nephrology. After returning to their home institutions, the Scholars participate in monthly Public Policy Committee conference calls, followed by a discussion of the issues with ASPN’s Washington representative. In the practical experience, the Scholars and ASPN public policy leaders meet with members of Congress or their staff, leadership of the Center for Medicare and Medicaid Services and officials from several institutes from the National Institutes of Health (NIH) with missions relevant to pediatric nephrology. Scholars also have the opportunity to interact with other advocacy groups that represent the larger nephrology community.
From the 1Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL; 2CRD Associates, Washington, DC; 3Department of Pediatrics, University of South Florida Morsani College of Medicine, St Petersburgh, FL; 4Division of Nephrology, The Children’s Hospital of Philadelphia, Philadelphia, PA; 5Division of Nephrology, Le Bonheur Children’s Hospital, Memphis, TN; 6Division of Nephrology, University of Wisconsin American Family Children’s Hospital, Madison, WI; 7Division of Nephrology, Children’s Hospital at Montefiore, Bronx, NY; 8 Division of Nephrology, Nationwide Children’s Hospital, Columbus, OH; 9Division of Nephrology, Rainbow Babies and Children’s Hospital, Cleveland, OH; 10Renal Section, Department of Pediatrics, Baylor College of Medicine, Houston, TX; 11 Department of Pediatrics, University of Virginia, Charlottesville, VA; and 12 Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY The authors declare no conflicts of interest. 0022-3476//$ - see front matter. Copyright ª 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jpeds.2014.10.032
218
Vol. 166, No. 2 February 2015 This curriculum was developed initially by ASPN advocacy leaders and has remained fairly constant. Expenses for registration for the legislative conference and for travel are financed by JELF.
Outcomes The JELF Advocacy Scholars Program has matriculated 9 trainees since 2011. Age, sex, and experience are described in Table II (available at www.jpeds.com). Five Scholars are actively engaged in basic or clinical research, with 3 of them committing the majority of their effort to investigation. All of the Scholars have met with Representatives and Senators, or their Health Legislative Aides, from their home districts. Most have participated in meetings with leaders of: the National Institute of Diabetes and Digestive and Kidney Diseases; National Heart, Lung, and Blood Institute; and Eunice Kennedy Shriver National Institute of Child Health and Human Development. Several have participated in ASPN meetings with the leadership of Center for Medicare and Medicaid Services. Each year, the senior Scholars have presented a report of their activities to the annual ASPN Business Meeting. All have become active members of ASPN Public Policy, Research, and/or Workforce Committees. During their training, the Scholars have advocated on Capitol Hill for extended immunosuppressive drug coverage for kidney transplant recipients, support for biomedical research and research training, increased Medicaid reimbursement for pediatric subspecialists, pediatric graduate medical education, and other issues. In several cases, they were able to secure support for ASPN’s issues from legislators who previously were uncommitted. At the NIH they participated in discussions of mutual priorities with relevant Institutes. All of the Scholars have participated in preparing the informational “leave-behinds” that are distributed during advocacy activities, and in updating ASPN’s Public Policy Handbook. They have organized letter-writing campaigns and informational webinars for pediatric dialysis units. Two presented at an advocacy workshop at the 2013 annual Pediatric Academic Societies/ASPN meeting. Three program graduates have served as co-chairs of our Public Policy or Research Committees. An important component of the program is the ability of the Scholars to include their advocacy activities in their overall career plans. The Scholars’ home institutions have supported these activities, recognizing that the skills developed will be as valuable to them as they are to our Society.
enhance advocacy training for medical students and residents.3-5 Importantly, the most effective means to accomplish such training are uncertain.6 Exposure to advocacy activities is a significant motivational component.7 A long-term analysis suggested that community involvement increases the level of commitment by some pediatric residents, but that the percentage of trainees interested in community involvement decreases over the course of residency.8 Through the support of the JELF, ASPN pursued several goals. First, in-depth training and education in issues is being accomplished for all 9 Scholars. For those interested in end-stage kidney disease policy, the concerns involved in federal funding for pediatric kidney disease care require mastery of complex legislative and regulatory issues to facilitate our interaction with government representatives and agencies. Didactic training was complemented by practical experiences on Capitol Hill and at the NIH to familiarize the Scholars with these institutions and initiate the development of relationships between the Scholars and public leaders who are important to our Society’s mission. Second, the program sought to promote a strong mentoring environment. Scholars and senior mentors with extensive experience in advocacy jointly participated in both the instruction and the meetings with government representatives. The progressively central role of the Scholars in the training process facilitated their confidence in and commitment to advocacy activities. The third goal was to revitalize our advocacy leadership. By promoting relationships with government officials and accelerating the leadership of program graduates in ASPN committees, the program aggressively addresses this issue. Several elements have been critical to the program’s success. A competitive selection process established a pool of Scholars who are both well suited and highly motivated. The 2-year training period promotes the development of a mentoring role for the more experienced Scholars, creating a continuum for Scholars and mentors that has cemented their involvement in future advocacy efforts. Finally, by bringing new participants into our advocacy process, we have both increased their skill sets and expanded the spectrum of geography and interests within our Public Policy Committee. As a result, ASPN has broadened its relationships with officials on Capitol Hill and at the NIH. n We gratefully acknowledge the support of the Lewy family in establishing the John E. Lewy Foundation.
Discussion
Reprint requests: H. William Schnaper, MD, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Morton 4-685G, 320 E Superior, Chicago, IL 60611. E-mail: [email protected]
Patient advocacy has been a cornerstone of pediatric practice at least since the work of Abraham Jacobi.1 Although there remains some dissent,2 numerous calls have been made to
References available at www.jpeds.com
219
THE JOURNAL OF PEDIATRICS
www.jpeds.com
References
Vol. 166, No. 2
Table I. Elements of the JELF scholar application
1. Burke EC. Abraham Jacobi, MD: the man and his legacy. Pediatrics 1998; 101:309-12. 2. Huddle TS. Perspective: medical professionalism and medical education should not involve commitments to political advocacy. Acad Med 2011; 86:378-83. 3. Croft D, Jay SJ, Meslin EM, Gaffney MM, Odell JD. Perspective: is it time for advocacy training in medical education? Acad Med 2012;87:1165-70. 4. Dharamsi S, Ho A, Spadafora SM, Woollard R. The physician as health advocate: translating the quest for social responsibility into medical education and practice. Acad Med 2011;86:1108-13. 5. Dobson S, Voyer S, Regehr G. Perspective: agency and activism: rethinking health advocacy in the medical profession. Acad Med 2012; 87:1161-4. 6. Mu L, Shroff F, Dharamsi S. Inspiring health advocacy in family medicine: a qualitative study. Educ Health (Abingdon) 2011;24:534. 7. Huntoon KM, McCluney CJ, Wiley EA, Scannell CA, Bruno R, Stull MJ. Self-reported evaluation of competencies and attitudes by physicians-intraining before and after a single day legislative advocacy experience. BMC Med Educ 2012;12:47. 8. Goldshore MA, Solomon BS, Downs SM, Pan R, Minkovitz CS. Residency exposures and anticipated future involvement in community settings. Acad Pediatr 2014;14:341-7.
Curriculum vitae Letter of support from the Division Chief or Fellowship Program Director that addresses the interests and leadership potential of the applicant Assurance from the applicant’s home program that, if accepted, the applicant will have adequate protected time to participate in both the training and post-program ASPN activities Two-page personal statement describing: origin of their interest in advocacy/governmental affairs past experiences with advocacy skills and knowledge they hope to obtain as a result of this opportunity anticipated impact of the experience on their professional development.
Table II. Demographics of John E. Lewy Foundation advocacy scholars Scholar class
2011-2013
2012-2014
2013-2015
2014-2016
Number Sex States represented Career paths of scholars
2 1 male, 1 female Tennessee, New Jersey Clinical Faculty, Physician-Scientist
2 1 male, 1 female Ohio, Texas Dialysis Director, Physician-Scientist
3 1 male, 2 female Wisconsin, Pennsylvania, New York Dialysis Director, Med-Peds Clinical Faculty, Fellow in Master of Science in Health Policy Program
2 1 male, 1 female Illinois, Ohio Clinical Research, Physician-Scientist
219.e1
Schnaper et al
T
he John E. Lewy Foundation for Children’s Health (JELF) and American Society of Pediatric Nephrology (ASPN) have collaborated in an Advocacy Scholars Program to provide training in advocacy techniques and issue content relevant to pediatric nephrology, mentored experience in advocacy, and opportunities to develop ongoing relationships with government officials. JELF was created in 2009 by the Lewy family in remembrance of Dr Lewy’s dedication to pediatric nephrology, advocacy, science, and education. Dr Lewy served as president of ASPN in 1981 and received the ASPN Founder’s Award in 2000. From its inception, JELF set as its highest priority the promotion of advocacy related to pediatric kidney disease. Founded in 1969, ASPN also prioritizes advocacy in its mission and serves pediatric nephrologists and affiliated healthcare professionals, promotes optimal care, disseminates advances in research, and is the primary representative of the pediatric nephrology community in North America. Given the value of experience and personal contacts in accomplishing policy initiatives, a small number of ASPN members were repeatedly called upon for their service. ASPN and JELF sought to expand this group by engaging newer members of the Society in advocacy.
Scholar Selection A competitive, annual application process was developed for interested ASPN members. All applications (Table I; available at www.jpeds.com) are considered, with priority accorded to candidates within 10 years of completing fellowship training to maximize the benefit of the training to both the applicant and ASPN. Consideration is given to diversity of background and goals, demonstrated interest in public policy and advocacy, area of anticipated advocacy focus, and potential impact of the training on the applicant’s career. Each year, 2-3 Scholars are selected from among the applicants. Applicants must agree to participate in all elements of the 2-year Scholars Program and, subsequently, in ASPN advocacy efforts. The 25 applications received in the first 4 years of the program
AAP ASPN JELF NIH
American Academy of Pediatrics American Society of Pediatric Nephrology John E. Lewy Foundation for Children’s Health National Institutes of Health
represented 23 individuals (7 men, 16 women), 29-50 years of age (median 35); from 13 states, the District of Columbia and 1 foreign country; with experience ranging from first-year fellows to full professors.
Training Program The 2-year program includes didactic instruction in legislative skills and closely mentored practical experience with senior leaders of ASPN and its Washington representative. Scholars attend a 3-day American Academy of Pediatrics (AAP) Legislative Conference, where they receive training in governmental affairs, health policy advocacy skills, and crafting an effective message. They visit members of Congress in an “AAP Hill Day” to promote child health issues. The AAP experience is supplemented by an additional, 1-day didactic session provided by ASPN’s Washington representative and ASPN advocacy leaders. This program focuses on issues specific to pediatric nephrology. After returning to their home institutions, the Scholars participate in monthly Public Policy Committee conference calls, followed by a discussion of the issues with ASPN’s Washington representative. In the practical experience, the Scholars and ASPN public policy leaders meet with members of Congress or their staff, leadership of the Center for Medicare and Medicaid Services and officials from several institutes from the National Institutes of Health (NIH) with missions relevant to pediatric nephrology. Scholars also have the opportunity to interact with other advocacy groups that represent the larger nephrology community.
From the 1Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL; 2CRD Associates, Washington, DC; 3Department of Pediatrics, University of South Florida Morsani College of Medicine, St Petersburgh, FL; 4Division of Nephrology, The Children’s Hospital of Philadelphia, Philadelphia, PA; 5Division of Nephrology, Le Bonheur Children’s Hospital, Memphis, TN; 6Division of Nephrology, University of Wisconsin American Family Children’s Hospital, Madison, WI; 7Division of Nephrology, Children’s Hospital at Montefiore, Bronx, NY; 8 Division of Nephrology, Nationwide Children’s Hospital, Columbus, OH; 9Division of Nephrology, Rainbow Babies and Children’s Hospital, Cleveland, OH; 10Renal Section, Department of Pediatrics, Baylor College of Medicine, Houston, TX; 11 Department of Pediatrics, University of Virginia, Charlottesville, VA; and 12 Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY The authors declare no conflicts of interest. 0022-3476//$ - see front matter. Copyright ª 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jpeds.2014.10.032
218
Vol. 166, No. 2 February 2015 This curriculum was developed initially by ASPN advocacy leaders and has remained fairly constant. Expenses for registration for the legislative conference and for travel are financed by JELF.
Outcomes The JELF Advocacy Scholars Program has matriculated 9 trainees since 2011. Age, sex, and experience are described in Table II (available at www.jpeds.com). Five Scholars are actively engaged in basic or clinical research, with 3 of them committing the majority of their effort to investigation. All of the Scholars have met with Representatives and Senators, or their Health Legislative Aides, from their home districts. Most have participated in meetings with leaders of: the National Institute of Diabetes and Digestive and Kidney Diseases; National Heart, Lung, and Blood Institute; and Eunice Kennedy Shriver National Institute of Child Health and Human Development. Several have participated in ASPN meetings with the leadership of Center for Medicare and Medicaid Services. Each year, the senior Scholars have presented a report of their activities to the annual ASPN Business Meeting. All have become active members of ASPN Public Policy, Research, and/or Workforce Committees. During their training, the Scholars have advocated on Capitol Hill for extended immunosuppressive drug coverage for kidney transplant recipients, support for biomedical research and research training, increased Medicaid reimbursement for pediatric subspecialists, pediatric graduate medical education, and other issues. In several cases, they were able to secure support for ASPN’s issues from legislators who previously were uncommitted. At the NIH they participated in discussions of mutual priorities with relevant Institutes. All of the Scholars have participated in preparing the informational “leave-behinds” that are distributed during advocacy activities, and in updating ASPN’s Public Policy Handbook. They have organized letter-writing campaigns and informational webinars for pediatric dialysis units. Two presented at an advocacy workshop at the 2013 annual Pediatric Academic Societies/ASPN meeting. Three program graduates have served as co-chairs of our Public Policy or Research Committees. An important component of the program is the ability of the Scholars to include their advocacy activities in their overall career plans. The Scholars’ home institutions have supported these activities, recognizing that the skills developed will be as valuable to them as they are to our Society.
enhance advocacy training for medical students and residents.3-5 Importantly, the most effective means to accomplish such training are uncertain.6 Exposure to advocacy activities is a significant motivational component.7 A long-term analysis suggested that community involvement increases the level of commitment by some pediatric residents, but that the percentage of trainees interested in community involvement decreases over the course of residency.8 Through the support of the JELF, ASPN pursued several goals. First, in-depth training and education in issues is being accomplished for all 9 Scholars. For those interested in end-stage kidney disease policy, the concerns involved in federal funding for pediatric kidney disease care require mastery of complex legislative and regulatory issues to facilitate our interaction with government representatives and agencies. Didactic training was complemented by practical experiences on Capitol Hill and at the NIH to familiarize the Scholars with these institutions and initiate the development of relationships between the Scholars and public leaders who are important to our Society’s mission. Second, the program sought to promote a strong mentoring environment. Scholars and senior mentors with extensive experience in advocacy jointly participated in both the instruction and the meetings with government representatives. The progressively central role of the Scholars in the training process facilitated their confidence in and commitment to advocacy activities. The third goal was to revitalize our advocacy leadership. By promoting relationships with government officials and accelerating the leadership of program graduates in ASPN committees, the program aggressively addresses this issue. Several elements have been critical to the program’s success. A competitive selection process established a pool of Scholars who are both well suited and highly motivated. The 2-year training period promotes the development of a mentoring role for the more experienced Scholars, creating a continuum for Scholars and mentors that has cemented their involvement in future advocacy efforts. Finally, by bringing new participants into our advocacy process, we have both increased their skill sets and expanded the spectrum of geography and interests within our Public Policy Committee. As a result, ASPN has broadened its relationships with officials on Capitol Hill and at the NIH. n We gratefully acknowledge the support of the Lewy family in establishing the John E. Lewy Foundation.
Discussion
Reprint requests: H. William Schnaper, MD, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Morton 4-685G, 320 E Superior, Chicago, IL 60611. E-mail: [email protected]
Patient advocacy has been a cornerstone of pediatric practice at least since the work of Abraham Jacobi.1 Although there remains some dissent,2 numerous calls have been made to
References available at www.jpeds.com
219
THE JOURNAL OF PEDIATRICS
www.jpeds.com
References
Vol. 166, No. 2
Table I. Elements of the JELF scholar application
1. Burke EC. Abraham Jacobi, MD: the man and his legacy. Pediatrics 1998; 101:309-12. 2. Huddle TS. Perspective: medical professionalism and medical education should not involve commitments to political advocacy. Acad Med 2011; 86:378-83. 3. Croft D, Jay SJ, Meslin EM, Gaffney MM, Odell JD. Perspective: is it time for advocacy training in medical education? Acad Med 2012;87:1165-70. 4. Dharamsi S, Ho A, Spadafora SM, Woollard R. The physician as health advocate: translating the quest for social responsibility into medical education and practice. Acad Med 2011;86:1108-13. 5. Dobson S, Voyer S, Regehr G. Perspective: agency and activism: rethinking health advocacy in the medical profession. Acad Med 2012; 87:1161-4. 6. Mu L, Shroff F, Dharamsi S. Inspiring health advocacy in family medicine: a qualitative study. Educ Health (Abingdon) 2011;24:534. 7. Huntoon KM, McCluney CJ, Wiley EA, Scannell CA, Bruno R, Stull MJ. Self-reported evaluation of competencies and attitudes by physicians-intraining before and after a single day legislative advocacy experience. BMC Med Educ 2012;12:47. 8. Goldshore MA, Solomon BS, Downs SM, Pan R, Minkovitz CS. Residency exposures and anticipated future involvement in community settings. Acad Pediatr 2014;14:341-7.
Curriculum vitae Letter of support from the Division Chief or Fellowship Program Director that addresses the interests and leadership potential of the applicant Assurance from the applicant’s home program that, if accepted, the applicant will have adequate protected time to participate in both the training and post-program ASPN activities Two-page personal statement describing: origin of their interest in advocacy/governmental affairs past experiences with advocacy skills and knowledge they hope to obtain as a result of this opportunity anticipated impact of the experience on their professional development.
Table II. Demographics of John E. Lewy Foundation advocacy scholars Scholar class
2011-2013
2012-2014
2013-2015
2014-2016
Number Sex States represented Career paths of scholars
2 1 male, 1 female Tennessee, New Jersey Clinical Faculty, Physician-Scientist
2 1 male, 1 female Ohio, Texas Dialysis Director, Physician-Scientist
3 1 male, 2 female Wisconsin, Pennsylvania, New York Dialysis Director, Med-Peds Clinical Faculty, Fellow in Master of Science in Health Policy Program
2 1 male, 1 female Illinois, Ohio Clinical Research, Physician-Scientist
219.e1
Schnaper et al
