Rare Disease Patient Advcate

DESCRIPTION:

This position will be focused on high rare disease patients that face multiple challenges, from accessing resources to adhering to a physician’s treatment plan. The patient advocate will work as an extension of the research team, and act as an advocate of the rare disease patients. The individual taking this role will manage his/her caseload through in-person, telephonic and electronic means of communications and coordination. The Patient Advocate will be the first and primary representative of Hach.Life to our members. He/she will be the key holder of the patient relationship and trust and will be responsible for building this relationship. The Patient Advocate will also be involved in the hach society to “plug in” the patient with others and help facilitate their overall product development trials.

RESPONSIBILITIES:

• Facilitates closing gaps in care by educating patients & caregivers about the benefits of trials of new products
• Coach and guide the patient for the trials & usage of products
• Establish positive, supportive relationships with rare disease participants in the research, product trials and collect feedback.
• Conduct an initial triage assessment to help align patients for the program in accordance with program guidelines.
• Act as the patient advocate and support the member through their patient journey starting with initial outreach.
• Schedule patient appointments on behalf of the research team & manufacturers
• Utilize motivational interviewing techniques to encourage patients to make lifestyle changes.
• Helps patients access hach.life services, including possibly filling out paperwork or access educational videos
• Documents their activities, need, feedback to improvise or adjust the product for their need
• Conduct telephonic outreach to rare disease patients, researchers & members within designated geographic area to introduce the hach.life and encourage enrollment to build hach portfolio

MEASURES OF SUCCESS

• Product Assessment for researcher/ manufacturer
• Patient happiness/ NPS
• Patient Engagement

QUALIFICATIONS:

• Ability to connect with people and understand the challenges they face.
• Well connected to the community and resources within the community they will serve.
• Empathetic
• Ability to use a range of outreach methods to engage individuals and groups in diverse settings.
• Experience working with rare disease patients or Special Needs populations. Proven experience with engaging patients in making healthy behavior changes.
• Great motivator
• Outgoing / positive personality
• Medical Assistant, Licensed Practical Nurse, Engagement Specialist or Community Health Worker Experience.
• Effective written and verbal communication skills demonstrating respect and cultural awareness during interactions with clients.
• Organized Coach