State neurologic societies and the AAN

Summary

This report considers the recommendations of the State Society Task Force (SSTF), which evaluated how the relationship between the American Academy of Neurology (AAN) and neurologic societies of individual states can foster the care of patients with neurologic diseases. The task force also evaluated the role of state neurosociety and state medical society interactions in supporting the profession of neurology. The SSTF recommended that the AAN expand current support services to state neurosocieties and foster additional neurosociety development. Specific services to be considered by the AAN include online combined AAN/state neurosociety dues payment and enhanced Web support. The role of the AAN as a liaison between state neurosocieties and state medical societies is important to facilitate state level advocacy for neurology.

The relationships between individual state neurologic societies (neurosocieties) and the American Academy of Neurology (AAN) are important to strengthen their respective roles and collective influence on policymakers, nationally and at state and grassroots levels. National medical specialty societies, such as the AAN, focus on the needs of patients cared for by members of their specialty. The AAN supports members’ needs by (1) monitoring and advocating on relevant federal legislative issues in the US Congress and regulatory issues in federal agencies such as the Centers for Medicaid and Medicare Services; (2) providing educational resources, and as a national forum for scientific presentations and publications; (3) assisting members in meeting requirements for initial board certification and maintenance of certification; (4) supporting the practice of neurology by developing clinical practice guidelines and quality measures; and (5) participating in national forums that influence the scope and reimbursement of practice.

Many policies and decisions that affect the practice of neurology and the care of patients with neurologic disease are determined at the individual state level. Neurologists benefit when they collaborate with their neurosociety and state medical society on issues that affect their patients and practice. Participation enables their voices and concerns to be represented in the legislative, regulatory, and payer arenas. While the role of a national specialty society in influencing policies and decisions at the state level is less defined, the AAN has over the years progressively increased its activities at the state level. In 2000, the AAN's Center for Health Policy (CHP) was established in response to the increasing role of policymakers and third-party payers in influencing how neurologists provide patient care. Presently, CHP oversees and coordinates AAN federal and state advocacy activities.

To advocate effectively, it is important for the AAN to connect with members regularly in order to identify the issues they face in delivering care to their patients. Historically, the AAN determined that it would not establish a formal chapter model for neurosocieties, which would necessitate that all neurosocieties have certain uniform requirements or mandated functions determined by the AAN. Instead, the AAN communicates with members individually and through neurosocieties, which are independent state-based organizations that provide neurologists with local opportunities and flexibility for networking, continuing medical education (CME), and advocacy. There are currently 34 active or developing neurosocieties in the United States (table 1). Communication with neurosocieties enables the AAN to identify legislative, regulatory, third-party payer, and other issues at the grassroots level. In this article, we review the evolution of AAN–neurosociety relationships to the present, and analyze and discuss the future roles of the AAN based upon the surveyed needs of neurosocieties and the AAN's vision of being indispensable to members.

Table 1.

Current state neurologic societies

Background: AAN and state neurosociety relationships

The AAN's relationships with neurosocieties date from the mid-1990s, when the Neurosociety Congress was formed to “provide a forum for representatives from local, state and regional neurosocieties; to stimulate discussion and debate on issues of concern to neurologists and to facilitate communication of those issues to the Academy Board of Directors and the appropriate Academy committee(s).” The State Affairs Committee (SAC), created in 2002, led the growth of AAN–neurosociety relations. Recognizing the overlap between state and federal advocacy, the SAC was combined with the Legislative Affairs Committee in 2009 to form the present Government Relations Committee (GRC) to effectively address legislative and regulatory policy issues at both the state and federal levels. The State and Member Outreach workgroup of the GRC develops advocacy strategies and priorities on the state level and maintains active communication with neurosocieties.

Over the years, the AAN has steadily increased communication and partnerships with neurosocieties. This has been done informally, mainly in response to CHP staff and GRC perceptions of need at the state and grassroots level. Since 2004, the AAN has hosted individual neurosociety meetings at AAN annual meetings and hosts neurosociety Web sites at no charge, a service currently utilized by 19 neurosocieties. In 2005, CHP staff and Academy leadership began attending neurosociety meetings. This is an important venue for AAN staff to exchange information with neurologists who may not be AAN members. In 2012, nearly 1,300 neurologists (>8% of US membership) had the opportunity for personal contact with AAN staff at neurosociety meetings. Since 2005, the Academy has hosted meetings for individual neurosocieties, and convened a roundtable for neurosociety leadership at the annual meeting. An annual free-standing State Society Leadership Roundtable has also been hosted by the AAN since 2006. The roundtable brings together leadership from neurosocieties, the CHP staff, and GRC leadership to foster multilevel discussions including state-level advocacy initiatives, strategies for maintaining a neurosociety, and other areas in which the AAN might provide support. Since 2006, a full-time CHP staff position has been dedicated to neurosociety relationships. More recently, the AAN has assisted members to establish or revitalize their neurosocieties (Arkansas, Nebraska, New York, and West Virginia). From the experience gained by assisting in these startups, the CHP staff has compiled an online compendium of neurosociety resources, the State Neurosociety e-manual.¹ The e-manual offers resources to assist neurosocieties in all stages of development and activity. In 2010, the State Advocacy Workgroup of the GRC began a program of identifying “key contacts” in each state called the State Neurology Insider Program (SNIP) to respond to local or federal issues affecting neurology and to inform the AAN. This program has since evolved into the Grassroots Alliance, discussed below. Table 2 summarizes the present AAN–neurosociety relationships.

Table 2.

Resources available to state neurologic societies through the AAN

As part of a strategic planning effort, in 2010, Robert C. Griggs, the AAN president, established the State Society Task Force (SSTF), drawing members from key AAN committees (GRC, Practice, Medical Economics and Management, Education, and Science). The SSTF was charged with analyzing the current relationship between the Academy and neurosocieties and making recommendations to the AAN Board of Directors (BOD) about the future role of the AAN in neurosociety creation, expansion, development, and maintenance; areas in which AAN committees could support or benefit from neurosocieties; and other areas of potential involvement.

The SSTF

The SSTF first evaluated the present AAN support to neurosocieties to estimate the needs of neurosocieties and possible returns on investment (ROI) to the AAN, both direct and indirect. The evaluation included (1) a survey of neurosociety leadership (appendix e-1 at Neurology.org/cp, survey I, to obtain information regarding the level of awareness and use of AAN resources, which of the existing offerings were highest priority, and what other resources were needed); (2) a review of information from previous needs assessment surveys (surveys conducted by the AAN on behalf of neurosocieties to assess current needs of the society by surveying society members and to help formulate society relations strategies. Survey data help the society make improvements and identify volunteers willing to assist the society); and (3) review of the input obtained from neurosocieties at State Society Leadership Roundtables. The SSTF also reviewed available Academy resources, including education and information technology, that could be utilized effectively to assist neurosocieties. The charge of the SSTF was expanded in 2011 to include an evaluation of the relationships between neurosocieties and state medical societies. The state medical societies are the 51 (including the District of Columbia) medical societies established in each state, e.g., the Massachusetts Medical Society, the Minnesota Medical Association. A second survey of neurosociety leadership was conducted in 2011 to obtain information on best practices followed by neurosocieties in their relationships with state medical societies (survey II).

Survey results

Survey I (appendix e-1) provided information on the needs of neurosocieties, garnering response from 24 of 34 state leaders (70%). Notably, almost 75% of respondents were willing to pay for CME accreditation services, CME-accredited speakers, or educational modules if provided by the AAN. Almost two-thirds of responding leaders considered meeting planning support a priority, and about half prioritized the need for enhanced Web site hosting.

Survey II (appendix e-2) evaluated the working relationship between the neurosociety and the state medical society. Thirty-one of the 34 neurosocieties surveyed responded (91%). Over half (53%) of responding neurosocieties reported a close working relationship with their state medical society; half regularly communicated issues of importance to their state medical society. About one-third (30%) of the respondent societies received administrative support from their state medical society or received other support (legislative monitoring [57%], CME administration [40%], direct lobbying support [38%], meeting planning services [23%], and membership recruitment and retention assistance [20%]). Individual neurosocieties were noted to support their state medical society through member participation on key state medical society committees (50%), by submitting resolutions to the state medical society House of Delegates (28%), and assisting the state medical society with legislative testimony or other advocacy support (45%). Many neurosocieties responded that they reach out to state policymakers (54%), but they were less active in federal advocacy efforts (36%), in which their outreach was primarily through participation in AAN activities such as Neurology on the Hill rather than direct neurosociety contact with state Congressional delegations. The neurosociety respondents expressed a desire to strengthen their relationships with their state medical society and identified AAN roles for assisting with that effort. The need expressed was that the AAN facilitate communication with state medical societies, educate the state medical societies about issues pertinent to neurology, identify advocacy issues that are amenable to joint action between neurosocieties and state medical societies, and encourage action on those issues.

SSTF recommendations

Based on its evaluation, the SSTF recognized that neurosocieties are a strong voice for neurology, and concluded that partnerships and interaction with neurosocieties are essential for the AAN to effectively advocate for patients at the state and grassroots level. The task force conclusions and recommendations are summarized as follows:

1. The existing partnerships with neurosocieties are working to effectively advocate for members and their patients at the grassroots level and should be expanded in ways that complement AAN support services currently in place. The task force recommended that the AAN continue and expand current support services to neurosocieties, and foster additional neurosociety development and organization.

2. The AAN should consider ways to provide specific services to neurosocieties:

   • a. Offer AAN members the option of combined online payment of AAN and neurosociety dues.

   • b. Evaluate the role of the AAN in providing affordable administrative support services for neurosocieties.

   • c. Enhance AAN Web site support for neurosocieties.

3. Forming relationships with neurologists playing key roles in their state medical societies would create a stronger neurologic presence in the advocacy activities of state medical societies. The AAN should identify neurologists and other physicians holding leadership positions in state medical societies for participation in the State Society Leadership Roundtable. The SSTF also recommended that the AAN implement strategies to enhance neurology influence within state medical societies and also recommended developing a grassroots advocacy program to facilitate a more active role by key state contacts in building relationships to influence both state and federal policy.

DISCUSSION

The AAN BOD formally accepted all the SSTF recommendations. As a result, a pilot program of combined AAN/neurosociety dues payment began in 2012, and is in progress during the 2014 AAN dues cycle. A pilot program provided CME approval assistance for the Commonwealth Neurological Society (Kentucky) in November 2011 and in September 2012, for the Arizona Neurological Society. Although this is an important “ask” from the neurosocieties, more work on grants, funding guidelines, and ACCME accreditation is necessary before CME-approved programs can be provided on a regular basis.

The primary impetus for expansion of relationships with state medical societies stems from recognition that both state and federal advocacy can be strengthened through these relationships. These relationships can enhance the ability of neurosocieties to form political connections with and influence state Congressional Delegations and their staff as well as state policymakers. State medical societies play a key role in influencing state and federal legislation through direct, personal advocacy with policymakers in their respective states. In addition, the relationships forged by neurosocieties with state medical societies can go beyond advocacy to develop working relationships such as administrative support provided by the state medical society.

To be more effective at advocacy, the AAN should take advocacy to where it can be most effective: the backyard of every member of Congress—local neurologists and their patients in each state—and to state legislators. Policymakers pay attention to their constituents who have established relationships with them in Washington, DC, and in their home states, and to constituents who have stories to tell. The key is for the AAN to implement ideas for bringing policy-savvy local neurologists and their patients into strong relationships with members of Congress and members of state legislatures to produce more effective advocacy. It is with this group of neurologists in each state that the AAN can develop a truly effective core of “key contacts” in its advocacy. Consistent with this approach, as a successor to SNIP, the AAN Grassroots Alliance was established in 2012 as a program in select states (Arizona, Colorado, Georgia, Illinois, Michigan, Minnesota, North Carolina, Ohio, Pennsylvania, and Wisconsin) to coordinate AAN members from each state in advocating directly and individually to represent neurology to federal and state legislators and staff at the state level. Alliance participants are asked to engage in various advocacy efforts (submitting letters to the editor, addressing policy issues relevant to neurology with state and federal policymakers and in committee testimony, hosting site visits for policymakers at their practice, and attending local fundraisers on behalf of the AAN's political action committee, Brain PAC).

Setting priorities is vital in the AAN's efforts to implement additional recommendations. Given the financial implications of expanding the current level of support, both tangible (“direct”) and intangible (“indirect”) ROI are important considerations. Although the most obvious ROI is direct, or financial, of equal or greater value is the indirect ROI that neurosociety support brings. The greatest indirect ROI to the AAN is the ability to actively recruit members at state and local levels to advocate for neurology and our patients. The influence of these partnerships on the success of AAN federal advocacy is also an important benefit. Additionally, indirect ROI benefits to AAN membership and the patients we advocate for cannot be overlooked.

As AAN support services for neurosocieties increase, efforts must be made to measure outcomes in order to define future strategies. In 2011, the AAN BOD adopted a charter that incorporates the strategic direction identified by the SSTF. The Board's strategy is to “promote the development of mutually beneficial collaborations with neurosocieties and state medical societies to assure that neurologists and their patients' voices and concerns are represented in the legislative, regulatory and payer arenas and to serve as additional avenue of communication for AAN tools, products and services.” The metrics in measuring the AAN's initial performance in implementing this strategy include proactive collaboration with neurosocieties on AAN priority issues and encouraging participation by neurosocieties in the State Society Leadership Roundtable. The AAN will continue to explore opportunities to expand its association with neurosocieties and state medical societies and fulfill its vision of being indispensable to its members.

COINVESTIGATORS

State Society Task Force members: Pushpa Narayanaswami, MD, FAAN (Chair); Neil Busis, MD, FAAN; Cynthia Comella, MD, FAAN; Jonathan Hosey, MD, FAAN; Elaine Jones, MD, FAAN; Stefan Pulst, MD, FAAN; Melissa Showers (AAN), Dave Showers (AAN).

STUDY FUNDING

No targeted funding reported.

DISCLOSURES

P. Narayanaswami serves on a scientific advisory board for Merz Pharmaceuticals and has received Myobloc vial grants for teaching from Solstice Pharmaceuticals and honoraria from the American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM) and the AAN. She serves on the Pharmacy and Therapeutics Committee of Blue Cross Blue Shield, MA. She has provided litigation consulting for General Electric Company and General Electric Healthcare. She has received research support from Merz pharmaceuticals, NIH/National Institute of Neurological Disorders and Stroke, Agency for Healthcare Research and Quality, and the National Amyotrophic Lateral Sclerosis Association. She has provided expert medical opinions for Advance Medical and for Boston Clinical Research Institute. D. Showers is a full-time employee of the American Academy of Neurology. B.T. Levi is General Counsel for the American Academy of Neurology and American Academy of Neurology Institute and Deputy Executive Director of the American Academy of Neurology and former executive director and general counsel of the North Dakota Medical Association. M. Showers is a full-time employee of the American Academy of Neurology. E. Jones reports no disclosures. N. Busis has received speaker honoraria from the AAN for serving as a faculty member for courses and was Practice & Technology Editor of AAN.com until April 2012. C. Comella serves on scientific advisory boards for Allergan, Ipsen, Merz, Teva, and World Med; serves on the editorial boards of Clinical Neuropharmacology and Sleep Medicine; has received publishing royalties from UpToDate, Wolters Kluwer, and Cambridge University Press; has served as a consultant for Allergan, Merz, and Ipsen; and has received support for research to her university from Allergan, Merz, Ipsen, Office of Rare Disease Research as a part of the Dystonia Coalition, the NIH, and the Dystonia Medical Research Foundation. S. Pulst serves as Editor-in-Chief of Current Genomics and on the editorial boards of Journal of Cerebellum, NeuroMolecular Medicine, Continuum, Experimental Neurology, Neurogenetics, and Nature Clinical Practice Neurology; is author on patents re: Nucleic acids encoding ataxin-2 binding proteins; Nucleic acid encoding Schwannomin-binding-proteins and products related thereto; Transgenic mouse expressing a polynucleotide encoding a human ataxin-2 polypeptide; Methods of detecting spinocerebellar ataxia-2 nucleic acids; Nucleic acid encoding spinocerebellar ataxia-2 and products related thereto; Schwannomin-binding-proteins; and Compositions and methods for spinocerebellar ataxia; receives publishing royalties for The Ataxias (Churchill Livingston, 2007), Genetics in Neurology (ANN Press, 2005), Genetics of Movement Disorders (Academic Press, 2003), Neurogenetics (Oxford University Press, 2000), and Molecular Genetic Testing in Neurology, 2nd–5th ed. (AAN Press, 1996); serves on the Speakers' Bureau for Athena Diagnostics, Inc.; receives research support from the NIH and the National Ataxia Foundation; receives license fee payments from Cedars-Sinai Medical Center; and has provided expert testimony in a medico-legal case. J. Hosey reports no disclosures. R.C. Griggs is a Past President of the American Academy of Neurology; serves as Chair of the Executive Committee of the Muscle Study Group, which receives support from pharmaceutical companies; chairs scientific advisory boards for The National Hospital Queen Square, The Nemo Center, Milan, Italy, and PTC Therapeutics, Inc.; serves on the editorial boards of NeuroTherapeutics and Current Treatment Opinions in Neurology and as Correspondence Editor for Neurology®; serves as a consultant for Novartis, Marathon, and Taro Pharmaceuticals; receives royalties from the publication of Andreoli and Carpenter's Cecil Essentials of Medicine, Eighth Edition (Elsevier) and Cecil Textbook of Medicine, 24th Edition (Elsevier); and has received research support from TaroPharma and the NIH/National Institute of Neurological Disorders and Stroke, the Food and Drug Administration, and the Muscular Dystrophy Association. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.