MDS Health Professional Special Interest Group (HP SIG) Chair: Victor McConvey; Co-Chair: Hanneke Kalf HP SIG Leadership Basecamp Meeting (Online) November 23-24, 2015 MINUTES Present: Victor McConvey, Gila Bronner, Gwyn Vernon, Elaine Book, Pravin Khemani, Vicki Segro, Samyra Keus, John Dean, Susan Heath, Mariella Graziano, Ruth Hagestuen, Clynton Correa, Ashwini Rao, and Hanneke Kalf Staff Liaison: Samantha Surillo Introduction & Background Twenty individuals holding Health Professional roles in the community, with an interest in Movement Disorders and/or Parkinson s disease (from across the globe) were invited to participate in the MDS HP SIG Leadership Basecamp Meeting Online. Participants were given 48 hours to submit feedback, questions, or ideas to three documents put forth as well as, to other colleagues commentary. Documents put forth were created by the HP SIG Chair, Victor McConvey and posted by the International Secretariat. Documents presented to the group included the Leadership Survey (Attachment I) and Fall Strategy Meeting Pitch (Attachment II).
Welcome The Meeting started with the International Secretariat welcoming group members to the discussion board and notifying all the discussion was now open on Basecamp to submit feedback. The following is a synopsis of what was discussed cumulatively across the 48 hour meeting period. Comments and Feedback to Agenda Items (I. X.) I. Education The group discussed the importance and significance of continuing to develop activities that appeal to multiple disciplines and focus on Palliative and Multidisciplinary Care Models. While many topics and formats were suggested for live activities, it was also suggested the group pursue development of Mass Open Online Content (MOOC) pre-courses. These MOOCs would cover basics and fundamentals of Movement Disorders and Parkinson s disease and act as an optional, but essential prerequisite to individuals planning to attend more advanced sessions at MDS Meetings. Topic and format suggestions from the group (live courses): Patients with DBS Patients with Duopa or Duodopa Patients with other hardware, such as Apomorphone pumps (not in USA yet) Other Atypical Parkinsonian disorders and hyper-kinetic disorders such as dystonia Recognizing & Diagnosing Atypical Parkinsonism Young Onset of PD and Very Advanced PD Patients How Health Professionals can empower Patients and Strengthen the partnership of Patient with Parkinson s, Family, and Care Providers Topic and Speaker suggestions (live courses): Early Recognition of fall risks and multidisciplinary collaboration o Suggested Speaker: Colleen Canning PT Specific: European Physiotherapy Guideline for Parkinson s o Suggested Speaker: Samyra Keus or Mariella Graziano
Ideas and Topic Suggestions for MOOCs: Overview of Education in Movement Disorders (pre-congresses) Establishing a baseline knowledge course Courses based on different levels of Base Knowledge o Beginner o Intermediate o Seasoned Professional Neuroscience of Movement Disorders Impairments & Functional Consequences through spectrum of disease Clinical Assessments & Interventions through the disease spectrum Additionally, it was suggested the HP SIG focus on development of Guidelines for other disciplines (similar to the European Guidelines for Parkinson s Disease, but for other roles outside of Physiotherapy). The group agreed this might be a good idea to pursue in the future, but will need to discuss which roles should be focused on in order to move forward. Similarly, the group discussed the possibility of creating a Standardized Neuroscience Curriculum for APPs (Physician Assistants and Practicing Nurses). This came through a suggestion from Dr. Pravin Khemani identifying that there is a significant need for this curriculum as it forms the building blocks for APPs interested in Neurology as well as subspecialty didactic materials developed by APPs and Physicians practicing in the field. Dr. Khemani also mentioned that he has reached out to the American Academy of Neurology (AAN) which has a subcommittee assigned to the development of a curriculum for APPs, but has not heard much from them since conversations started in mid-2015. Dr. Khemani went on to suggest that perhaps MDS could consider a joint effort with AAN s committee in developing this material. Although the group felt strongly about this project, it was identified that a standardized curriculum for RN s and physician assistants would be difficult to develop and almost impossible to achieve as there are significant differences in knowledge requirements and practice throughout the world. Focusing on the topic of Education, the HP SIG members agreed that it would be beneficial to develop a global HP calendar so all are aware of what is available and can share ideas and support one another. Additionally, the group identified a strong need for and desire to organize a Palliative Care Task Force on behalf of MDS in recognition of the growing importance and lack of educational content being provided in the subject matter.
MOOCs If the HP SIG would like to pursue development of Mass Open Online Content, the necessary MOOC request form will need to be discussed and completed by the group. The International Secretariat will then need to work with the HP SIG and MDS Media Program Manager prior to Submitting the completed MOOC request form to the Officers and MDS Education Committee for consideration. Guidelines The HP SIG will need to identify which disciplines they would like to create Guidelines for and provide to the HP SIG Chair and Secretariat. The HP SIG Chair and International Secretariat will then discuss possibilities of developing a proposal requesting Officer consideration. Global Calendar Group Members should send activities they would like added to the HP global calendar to the Secretariat who will then provide to the MDS Website Manger to add to the HP SIG Webpage on the MDS Website with the caveat that any activities that directly conflict with MDS Meeting dates go to leadership for approval prior to posting online. Palliative Care Task Force The International Secretariat will work with the HP SIG Chair on plans to pursue creation and organization of a Palliative Care Task Force for MDS. II. SIG Leadership: Chair, Pan American Section of the HP-SIG (Currently Vacant) The group will further discuss this vacancy at the Berlin Congress and select an individual to fill the HP-SIG-PAS Chair role shortly following. Chair, Website Editorial Group of the HP-SIG (Currently Vacant) It was suggested that both John Dean and Ashwini Rao work as Co-chairs for the Website Editorial Group of the HP SIG. Chair, Education Committee of the HP-SIG (Currently Vacant) Both Clynton Correa and Mariella Graziano have volunteered to assist in this role. Vacant Leadership Roles The HP SIG Chair and Co-chair will work with the International Secretariat in nominating and inviting individuals to serve in open leadership roles with the HP SIG.
III. Leadership Survey See Attachment I Individual s commentary on the leadership survey is interspersed throughout these minutes as the leadership survey addressed many facets of the Society, including Membership, Education and further integrating Health Professionals within the Society. IV. Fall Strategy meeting pitch In response to the Meeting pitch presented, Gwyn Vernon and Dr. Khemani identified that they both have experience in the topic and are currently running multidisciplinary clinics. Gwyn mentioned her clinic is for parkinsonisms wherein the core components include disciplines of MD, RN, ST, PT, OT, and MSWs and referrals are provided for services needed outside of the aforementioned. Dr. Khemani noted that he started an MSA multidisciplinary clinic a few months ago due to recognizing how fragmented clinical care for PD and most atypical Parkinson s conditions within most US institutions truly is. Dr. Khemani further detailed that his clinic will provide superlative clinical care to the patient; address caregiver needs; educate physicians and non-physicians of the future; and participate in translational research. Thus far, he has had three clinics that have been well received despite the challenges of providing affordable multidisciplinary care within the US-Heath care system. Dr Khemani further informed the group that the clinics are funded by a donor with MSA, which supports the salaries of health professionals involved. Members of the SIG specified an interest in developing at least one interdisciplinary session at each of the MDS Meetings in an effort to highlight the importance of the multidisciplinary approach. It was also suggested the group consider developing short courses for Health Professionals of different roles regionally. The group will further discuss these topics in their next meeting. V. Membership How do we increase membership of the MDS? The group discussed and agreed that promoting engagement among professionals via Facebook might be good a way of increasing membership. The group suggested enhancing the current FB page to attract attention of professionals around the world and encourage folks to spread important educational information. Further, members of the SIG suggested creating a mentorship program for individuals becoming members of MDS whom reside in developing countries as an effort to increase engagement. It was also suggested the group consider pursuing an Interactive meeting on Basecamp for the full 300 + members of the MDS HP SIG in the future, (once the leadership group has had more experience utilizing the meeting platform in a more fluid manner).
Additionally, the group highlighted that giving the HP SIG more exposure at MDS Meetings might be best (through either increasing coverage within the program, a poster at the MDS booth, or a letter to attendees who may work as Health Professionals in non-physician roles). Engagement Suggestions The Secretariat and HP SIG Chair will discuss engagement option suggestions provided by the group and determine where the group should focus it s resources in pursuing ideas presented. Letter to Attendees Similar to last year, the international Secretariat will provide a list of all HP registrants for Congress to the HP SIG Membership Representative, Julie Carter, so she may send a personal welcome note to those planning on attending the Congress in Berlin. VI. Publications The group discussed further ways to engage HPs and suggested MDS consider the following channels for sharing individuals publications: Promote on Facebook or via Twitter, and add a Publications Section on the MDS HP SIG Webpage, along with suggesting group members re-tweet or share the Society s posts. Publications The international Secretariat will work with the MDS Website Manager to ensure all publications shared from HPs may be placed on the MDS HP SIG Webpage where members may utilize other social media outlets to refer folks to this information. VII. Adjourn The HP SIG Co-Chair, Hanneke Kalf thanked all participants for their feedback and thoughts; the International Secretariat then notified all the Meeting Board had closed for commentary and minutes would be provided once finalized with the Chair. Respectfully submitted, Samantha Surillo International Secretariat MDS Health Professional Special Interest Group International Parkinson and Movement Disorder Society (MDS)