Presentation on theme: "Advocacy Working Group Recommendations Members: Pam Bower, Larry Kellerman, Judy Biedenharn, Philip Fortier, Carol Langer, Cyndi Roemer, Lily Shih, Sharon."— Presentation transcript:
Advocacy Working Group Recommendations Members: Pam Bower, Larry Kellerman, Judy Biedenharn, Philip Fortier, Carol Langer, Cyndi Roemer, Lily Shih, Sharon Sutton
Recommendation One Recommendation: Increase knowledge about MSA among medical professionals by developing a continuing education program that emphasizes patient- centered care. Develop accredited MSA centers of excellence to serve as models. Need: The needs of MSA patients are not adequately recognized by health professionals and thus patients are underserved. Pathway: Work with all stakeholders to develop the "gold standard of care" for MSA patients (http://datamsa.com/).http://datamsa.com Collaborate with MSA organizations to develop criteria for accreditation of MSA centers of excellence. Develop and fund a comprehensive MSA medical education program drawing on a variety of modalities including CME workshops, conferences, rounds, fellowships, media, etc.
Recommendation Two Recommendation: Initiate a funded liaison who works with stakeholders to access funds, cultivate the development of innovative technologies, and nurture collaborative research programs. Need: Presently, stakeholders are working independently thus limiting access to sufficient funds that support the development of vital research and assistive technologies. Coordination of efforts will facilitate progress. Pathway: Identify stakeholders. Create a jointly funded liaison position to coordinate stakeholders in accordance with professional standards and subject to ethical guidelines. Develop dedicated MSA fundraising activities supported by and benefitting collaborating MSA partners. Develop dynamic review process to ensure timely and accurate reports.
Recommendation Three Recommendation: Institute a public information structure to develop and disseminate information tailored for advocacy and awareness. Need: The disparity in quality resources presently available requires a structure to ensure professional materials are consistently available to medical professionals as well as the public. Pathway: Institute a network of professional contributors. Develop a clearinghouse of materials dispensed through multiple modalities. Facilitate a pathway for greater involvement for those expressing interest. Implement a survey program to assess efficacy of materials.
Recommendation Four Recommendation: Develop a dynamic and collaborative network of partnerships among relevant organizations that will strengthen advocacy, raise awareness, support patient responsive research and government action. Need: Currently, advocacy activities among rare neurodegenerative disease organizations are disconnected. A unified strategy will strengthen the efforts of all. Pathway: Implement a data mining program to spur patient responsive research activities and facilitate communication and accessibility. Establish collaborative efforts with other organizations to raise awareness, strengthen advocacy and patient responsive research. Ensure a dynamic network through implementation of an annual review program. Encourage and support unified awareness activities (such as the MSA Shoe).