Senior Director, Patient Affairs Strategy and Operations

Sarepta Therapeutics•Cambridge, MA

6d•Hybrid

About The Position

The Senior Director, Patient Affairs Strategy and Operations Excellence lead for Sarepta Therapeutics is a pivotal role dedicated to designing and implementing concrete frameworks to ensure we are able to foster strong relationships with patient communities and advance Sarepta’s patient-centric approach across multiple disease areas, including Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (DM1), Ataxias, and other rare genetic diseases in muscle, Central Nervous System (CNS) and Pulmonary. Reporting directly to the Senior Vice President of Patient Affairs, this person will lead the co-creation of governance models, frameworks, and internal process and policy to ensure a strong foundation for patient engagement globally. This role will be responsible for establishing quality measures and metrics and communications strategy for key stakeholders. The Patient Affairs Strategy and Operations Excellence Lead leadership role focused on developing and executing strategies to enhance patient experiences and engagement across the entire organization and across the medicine’s life cycle. This includes understanding patient needs, collaborating with various teams, and overseeing operations related to ongoing external engagement and outreach. Be a progressive change agent and trusted partner with proven success in creatively solving for business challenges and transforming the way that patients learn about and participate in clinical trials, share their perspectives and how we internalize them. Develop and implement a comprehensive global Patient Affairs engagement process and frameworks to ensure patient centricity is driving action. Design frameworks to enhance patient-facing activities in support of Clinical Development related to clinical protocol design, execution and enrollment, such as Patient Friction Co-Efficient and other novel frameworks. Lead strategy, development, and implementation of patient and caregiver scientific literacy education plan and initiatives Oversee the Patient Affairs team budgeting process and reporting, team operating model and governance. Identify trends and areas for improvement and report on performance to senior management. Partner cross-functionally to identify opportunities to streamline Patient Engagement Operations through standardized processes, innovative technology and/or centralized vendors. Participate in cross-functional internal meetings with clinical, medical affairs, and commercial teams to ensure all plans and activities are informed by the patient voice. Create systematic mechanisms such as patient insights forums to obtain patient input, including but not limited to clinical trial design and related to other critical Sarepta activities. Strategically manage Patient Affairs team budget including Patient Advocacy Organization sponsorships and charitable donations. Stay current with industry and regulatory practices related to patient advocacy and patient input. Working with cross-functional colleagues ensure patient experience data are incorporated in our development, regulatory, and commercial activities. Provide regular updates to disease communities. Ensure all Sarepta employees have regular opportunities to learn about the patient perspective and Sarepta’s commitment in Rare Disease.

Requirements

Bachelor’s degree in communication, psychology, counseling, social work, or a related field; advanced degree preferred.
12+ years of patient advocacy experience in a healthcare/biopharma setting, at least 5 years of experience in clinical trial operations
Demonstrated patient centric mindset and commitment.
Science and data driven while at the same time, creative and flexible in strategic thinking and problem solving.
Ability to work both independently and collaboratively with cross-functional internal and external teams.
Ability to effectively navigate complex patient issues and manage sensitive information.
Excellent interpersonal, oral, and written communication skills, including strong presentation skills; confident in presenting to senior leadership.
Ability to build rapport quickly with a diverse group of individuals.
Proactive, objective, and diplomatic influence within all levels of the organization.
Demonstrated ability to work under pressure and manage multiple responsibilities with strategic and tactical approaches.
Ability to create a positive work environment to retain and develop staff.
Strong sense of accountability and sound judgment.
Experience working with stakeholders/partners at all levels globally.
Demonstrated strategic capabilities and ability to work effectively in complex and rapidly changing environments.
Strong knowledge of current healthcare compliance including compliance with applicable laws, regulations, and pharmaceutical industry codes
Demonstrated experience managing complex operations in a highly regulated and regularly audited environment.
Demonstrated experience in creating, training, deploying, and managing policies.
Proven success in choosing, onboarding, and managing external strategic vendors / partners.
Strong project and process management skills, along with the ability to work on multiple tasks, and to prioritize effectively.

Responsibilities

Develop and implement a comprehensive global Patient Affairs engagement process and frameworks to ensure patient centricity is driving action.
Design frameworks to enhance patient-facing activities in support of Clinical Development related to clinical protocol design, execution and enrollment, such as Patient Friction Co-Efficient and other novel frameworks.
Lead strategy, development, and implementation of patient and caregiver scientific literacy education plan and initiatives
Oversee the Patient Affairs team budgeting process and reporting, team operating model and governance.
Identify trends and areas for improvement and report on performance to senior management.
Partner cross-functionally to identify opportunities to streamline Patient Engagement Operations through standardized processes, innovative technology and/or centralized vendors.
Participate in cross-functional internal meetings with clinical, medical affairs, and commercial teams to ensure all plans and activities are informed by the patient voice.
Create systematic mechanisms such as patient insights forums to obtain patient input, including but not limited to clinical trial design and related to other critical Sarepta activities.
Strategically manage Patient Affairs team budget including Patient Advocacy Organization sponsorships and charitable donations.
Stay current with industry and regulatory practices related to patient advocacy and patient input.
Working with cross-functional colleagues ensure patient experience data are incorporated in our development, regulatory, and commercial activities.
Provide regular updates to disease communities.
Ensure all Sarepta employees have regular opportunities to learn about the patient perspective and Sarepta’s commitment in Rare Disease.