ALS Program Coordinator

Medical University of South Carolina•Charleston, SC

20h

About The Position

This position acts as a coordinator and case manager for approximately 100 patients at a time. The nurse coordinator serves as a central figure in the multidisciplinary ALS care team, ensuring seamless coordination of clinical services, patient education, and administrative support. This role is vital in enhancing patient outcomes, optimizing clinic operations and supporting emotional and physical needs of individuals living with ALS and their families.

Requirements

A Bachelor's degree and one year work experience; or high school diploma (or equivalent) and 2 to 4 years work experience.

Responsibilities

Patient care coordination : act as primary point of contact for patients and families, ensuring they receive comprehensive care by coordinating appointments, follow up and referrals to specialists. Be able identify patients who may have transportation limitations or other barriers to in person clinic visits and instead of having patients no show or cancel, be able to transition their clinic visits to virtual visits
Resource: Act as an agnostic facilitator to help patients and families connect with local and national ALS organizations (e.g. ALS association, Team Gleason, IamALS, etc) ensuring access to educational resources, support groups, advocacy opportunities and community-based services.
Research coordination: Monitor the local and regional research landscape and proactively connect interested patients and families with appropriate clinical trials and research opportunities, supporting informed participation and collaboration with research teams at other institutions.
Symptom management: Interface with the clinic physician between visits to address patient concerns related to symptom management and medication coordination, ensuring timely follow-up and continuity of care.
Clinic intake: Administer a detailed intake form prior to the patient’s first clinic visit, capturing personal history such as prior occupation, interests, hobbies and key family contacts. This information supports individualized care and facilitates future outreach for the clinic’s annual memorial service.
Paperwork : handle disability paperwork, life insurance, handicap placards, veteran benefits and other documentation that inundates our providers that don’t necessarily need an MD signature.
Pre-clinic prep : Conduct pre-visit outreach calls to patients and caregivers to administer the ALS Functional Rating Scale-Revised (ALSFRS-R), helping to identify key areas of concern and streamline clinic flow.
Pre -clinic communication : send a pre-clinic email to all participating staff the day before each clinic, summarizing the patients scheduled to be seen, including a brief review of their disease history, recent changes in function, and any specific concerns or goals to be addressed during the visit.
Coordinate : Manage the flow of the multidisciplinary clinic by coordinating provider schedules and ensuring timely transitions between team members.
Triage: Identify and triage patient concerns to the appropriate specialists ensuring that each provider addresses the most relevant and pressing needs during the visit.
Personalize each patient’s clinic experience by reviewing the pre-visit assessment (ALSFRS-R) and tailoring the visit structure to their current priorities and challenges.
Track and document provider interactions and recommendations in real time to support accurate and comprehensive after visit summaries.
Serve as central point of coordination during clinic sessions, troubleshooting logistical issues and maintaining a calm, organized environment for patients, families and staff.
Documentation: Ensure that all necessary documentation, referrals, and orders are completed and communicated before the patient leaves the clinic and is in the AVS with appropriate follow up contact information.
Refreshments: Arrange for a breakfast snack cart to be available during clinic hours, offering refreshments to patients and families to promote comfort and hospitality.
Complementary services: Coordinate with partners within MUSC and the greater Charleston community to invite complementary supportive services to clinic intermittently as surprise enhancements. These may include massage therapists, therapy dogs, musicians, or other wellness-focused providers to enrich the patient and family experience.
Conclude clinic : Meet with patients and families at the conclusion of each clinic visit to review the After Visit Summary (AVS), including details on DME orders, where they were sent, and contact information for follow up questions regarding equipment or outpatient referrals.
Learners : facilitate the learning experience for medical students, residents and other trainees attending clinic by providing background educational materials, orienting them to the clinic structure and guiding their interacts with patients and the multidisciplinary team.
Represent the MUSC ALS clinic at community events such as the ALS walk, health fairs and awareness campaigns, fostering visibility and connection with patients, families and supporters.
Collaborate with local and national ALS organizations to promote advocacy initiatives, share education resources and support fundraising efforts.
Identify and cultivate relationships with community members, business, and organizations who may be interested in hosting fundraisers, donating services, or partnering with the clinic to enhance patient support.
Coordinate clinic participation in community-based events and campaigns, including managing logistics and promoting involvement among staff, patients and families.
Develop and maintain a network of community contacts to bring additional resources and opportunities to the clinic, such as guest speakers (for clinic team members), wellness providers or volunteer services.
Advocate for the needs of ALS patients and caregivers within the MUSC system and across our clinic regional area working to improve access to care, support services and public awareness.
Memorial service: coordinate and oversee the clinic’s annual memorial service to honor and remember patients who have passed away in the prior calendar year, including outreach to families, planning the event, and collaborating with community partners to ensure a meaningful experience.