Senior Vice President, Care and Research

Company Background/Culture:

Parent Project Muscular Dystrophy (PPMD) is the country’s largest patient organization focused exclusively on Duchenne and Becker muscular dystrophy. Through comprehensive Advocacy, Care, Education, Research programs and the largest global Duchenne patient registry, PPMD accelerates research, impacts local and federal policy, demands optimal care for all families, and strives to ensure access to approved therapies.

Position Summary:

The Senior Vice President (SVP), Care and Research provides strategic direction to a team of highly knowledgeable healthcare, scientific, community outreach, education and other professionals committed to providing information about, and access to, a full range of care, education, research, therapeutic innovation and trials, and supportive resources for Duchenne and Becker patients, as well as females with Dystrophinopathy, and their families

The SVP, Care and Research works closely with PPMD’s Team Leads and staff to develop impactful programs, access to specialized care and a national network of Certified Duchenne Care Centers, and to advance Education and Research initiatives which are aligned with PPMD’s strategic plan and promotes PPMD’s core mission. The SVP, Care and Research works collaboratively with Advocacy and Registry Team Leads to ensure alignment with and integration of organizational goals and priorities

The SVP partners closely with internal staff and external collaborators to foster crucial relationships with stakeholders including researchers, clinicians, regulators, and industry partners to advance innovation, equity, and evidence-based care for all individuals living with Duchenne and Becker muscular dystrophy.

Additionally, the SVP, Care and Research will work in concert with the Chief Executive Officer (“CEO”) to drive organizational change, forging critical working relationships and synergies internally and externally while establishing greater transparency and accountability for those people carrying out the organization’s strategic plan.

The SVP, Care and Research is a member of PPMD’s leadership team with access to critical business and organizational information as well as access to confidential patient/family information in the leadership of Clinical Care and Education, Research and Clinical Innovation and Strategic Initiatives teams. As such, the SVP, Care and Research must always adhere to the highest standards of confidentiality and discretion.

Essential Duties:

The SVP, Care and Research will be able to perform the following duties with or without reasonable accommodation:

PROGRAM OVERSIGHT, DEVELOPMENT, IMPLEMENTATION and ASSESSMENT:

The SVP, Care and Research works closely with department leaders under their jurisdiction, providing strategic direction and support in the development, implementation and assessment of programs, processes, information sources and access to specialized care, which support the diverse needs of the Duchenne and Becker communities, PPMD’s strategic plan and mission.

FOR PROGRAM DEPARTMENTS THAT REPORT TO THE POSITION, THE SVP, Care and Research:

• Leads department-specific strategic planning processes to determine and synthesize future program initiatives, related project plans and program goals; establishes timelines and identifies milestone deliverables; conducts periodic status assessments and adjusts plans as necessary; ensures accountability and responsibilities are clearly outlined for team and cross-pillar members.
• Assists CEO with the alignment and integration of department-specific strategic plans to the organization’s strategic plan and direction.
• Provides financial management and resource allocation
  • Oversees budget process for each department of accountability and their respective prioritized programs.
  • Works closely with the CBO to ensure sufficient funds are available through the end of each fiscal year and monies are spent in accordance with budgetary guidelines.
• Demonstrates team leadership and development
  • Plays key role in critical personnel actions (hiring, onboarding, promotion, change in status, compensation, corrective counselling, conflict resolution, and termination.)
  • Fosters a culture of excellence, collaboration, and connections among the team
  • Establishes clear performance expectations, provides regular feedback and creates development opportunities
  • Recruits, retains and develops high-performing team members
• Staffs cross-pillar projects through effective use of talents to achieve goals.
• Establishes performance metrics and indicators to measure success: people, programs, projects.

CLINICAL CARE, & EDUCATION DEPARTMENT:

Serve as manager of, sounding board to and collaborative partner with VP, Clinical Care and Education (“VP, Clinical Care”):

• Review and contribute to proposed care programs and intake processes to provide Duchenne and Becker patients, as well as females with dystrophinopathy, and their families access to information about healthcare and therapeutic options, avenues of support and payor coverages.
• The SVP, Care and Research is accountable for the overarching strategic direction and performance of the Certified Care Center (CDCC) Program, ensuring continuous improvement based on evolving standards, technologies and patient feedback. With the VP, Clinical Care, and as proposed by the CDCC Manager, the SVP Care and Research reviews and approves (re)certification criteria and processes for CDCCs and recommendations to expand/contract CDCC Network.
• Guide the evolution of care standards, working with clinical experts and advisory committees to identify emerging best practices and update certification requirements accordingly.
• Review agenda, speaker list and special programming for major PPMD sponsored conferences and education seminars; participate in same as requested.
• Oversee the development of care-focused publications, guidelines, and educational materials to support clinicians and families. Provide feedback on Clinical Care forward-facing communications, social media and website postings; suggest topics; draft content when requested or appropriate.
• Review and provide feedback on major presentations which VP, Clinical Care and team members create for research, industry, healthcare providers and other stakeholders.
• Collaborate with Duchenne Registry to effectively integrate clinical outcomes data into care improvement and policy discussions.
• Partner with Advocacy Team on Access & Reimbursement to ensure that evolving care standards are reflected in payer and coverage frameworks.
• Build, foster and maintain crucial relationships across the Duchenne and Becker clinical community.

RESEARCH & CLINICAL INNOVATION:

Serve as manager of, sounding board to and collaborative partner with VP, Research & Clinical Innovation:

• Oversee all aspects of research strategy, grantmaking, partnerships, and venture philanthropy, ensuring scientific rigor, transparency, and measurable impact. Meet regularly with VP, Research and Clinical Innovation to evaluate progress on research projects and clinical trials.
• With VP, identify and evaluate emerging research opportunities including biomarkers, data science, platform technologies, gene and cell therapies, and clinical trial readiness initiatives.
• With VP, co-lead Drug Development Roundtable of key clinical and research stakeholders (set agenda, speakers, programming and serve as speaker/moderator).
• Serve as liaison for regulatory science initiatives, and research consortia, ensuring alignment of clinical development priorities with patient needs (e.g. Critical Path Institute Data Consortium (D-RSC Consortium), Collaborative Trajectory Analysis Project (cTAP))
• Liaise with VP to ensure subject matter experts within the Scientific Advisory Committee and vPAC Advisors are engaged and optimized against need and mission.
• Assist VP, Research and Clinical Innovation with development of content for media and website posts regarding research, trials, FDA and related clinical news.
• Assist with evolution of PPMD Ventures program to next lifecycle stage and strategic planning.
• Serve as a scientific spokesperson, translating complex findings into accessible communications for families, donors, and regulators.
• Collaborate with Duchenne Registry Team to advance data harmonization, interoperability, and analytics to enhance the Registry’s scientific and regulatory relevance.
• Identify and leverage resources to enhance team deliverables (e.g. personnel, technologies, project management/timelines)
• Build, foster and maintain crucial relationships across the Duchenne and Becker research community, inclusive of industry partners in a shared effort to collaborate on pre-competitive priorities as the field evolves

HEALTH-RELATED DATA INTEGRATION AND SOLUTIONS:

Serve as manager of, sounding board to and collaborative partner with Chief of Strategic Initiatives.

• Lead business plan-development for PPMD’s Duchenne Outcomes Research Interchange (DORI)
• The SVP, Care and Research is accountable for the strategic direction and performance of PPMD’s Electronic Health Record extraction study, ensuring internal responsible parties are identified, aligned and coordinated.
  • Oversee the development and implementation of a system to utilize EHR data collected from PPMD’s Certified Duchenne Care centers to help evaluate impact and performance across sites.
  • Ensure all data-driven programs are aligned to organization and department priorities and how their work contributes to the mission and strategic goals.
• Support the Chief as a subject matter expert of health-related data integration solutions and data architecture. The Chief will be responsible for the technical design and implementation of new and existing data solutions to support multiple projects across PPMD’s core pillars: Research, Care, Registry, and Advocacy.
• Lead PPMD’s collaboration with CINRG
• Consult with external stakeholders to identify gaps and bridge to data-solutions.
• Build, foster and maintain crucial relationships across the Duchenne and Becker data community.

STRATEGIC LEADERSHIP AND PROGRAM MANAGEMENT

• With President, CEO and CBO, foster PPMD’s strategic planning processes to support the Board’s vision, strategic goals and priorities.
• Develop and execute approved strategies, plans and budgets for functional areas of oversight
• Implement metrics and indicators to measure success: people, programs, projects.
• Identify areas for expansion/focus of support services and provide strategic direction for growth and sustainability

EDUCATION OPPORTUNITIES

With department VPs, advance knowledge of Duchenne and Becker therapeutic developments, clinical trial outcomes and opportunities/expansion of accessible care across diverse stakeholders (health care providers, patients & their families/caretakers, research, academic, etc.) through presentations and communications.

• Participate in seminar/conference panels, webcasts, podcasts and other venues to inform stakeholders about progress and opportunities in Duchenne and Becker therapeutics and care programs.
• Provide research, therapeutics, clinical trials and program updates for PPMD staff, patients, families and the Board.
• Work with Marketing and Communications teams to ensure PPMD website and other communication resources reflect the focus of key programs, department initiatives and advances on clinical, research and care fronts.

ORGANIZATIONAL LEADERSHIP TEAM

Serve on the Executive Leadership team for PPMD with the President, CEO and CBO to:

• Identify organizational initiatives, goals, programming, strategic plans and resources which advance PPMD’s core mission to promote optimal care standards for the Duchenne and Becker communities; ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support; and end Duchenne.
• Coordinate department programs, talent, finances and processes in support of organizational goals and mission.
• Work closely with the CEO, President and the Board of Directors on the strategic planning process and mission; organization and leadership structure; care, research, data integration and utilization, clinical trial and therapeutic initiatives; development and funding opportunities; community engagement and communications.

Required Education, Experience, Skills and Attributes:

• Bachelor’s degree required, with Master’s degree in relevant field preferred.
• Minimum 10 years’ experience in a strategic leadership role, preferably inclusive of experience in nonprofit sector.
• 10+ years’ administrative management experience in a bio-medical research, therapeutic development, clinical care or community outreach role.
• Demonstrated ability to develop and maintain strong, collaborative relationships with internal and external stakeholders.
• Demonstrated ability to identify, develop, implement and monitor strategic initiatives and major programs.
• Demonstrated ability to coordinate diverse programs and teams to achieve common objectives.
• Demonstrated ability to manage teams to high performance
• Ability to understand and capitalize upon the intercorrelation of scientific/medical research, clinical trials, clinical care, and fit-for-purpose data solutions.
• Exceptional oral and written communication skills to give presentations to and interact effectively with industry panels, community members, and the Board of Directors
• Exceptional interpersonal skills to interact confidently and effectively with researchers, pharmaceutical/medical professionals, patients, families, team members and government agencies.
• Strong strategic analytical, problem-solving skills and evidence generation skills to guide and develop programs/initiatives for the Duchenne and Becker communities.
• Proficient computer skills with standard technology tools such as Microsoft Office, Teams, Google Docs, databases, etc.

Preferred Education, Experience. Skills and Attributes:

• Knowledge of Duchenne and Becker community, clinical care and research initiatives.
• Prior experience working in rare disease organization.
• Prior work or degree experience in clinical trials, clinical care, medical technology products, evidence generation and/or medical/scientific research arena.
• Prior experience with organizational strategic planning, preferably in a leadership role.
• Experience with Classy and Salesforce preferred.

Physical Requirements:

• Ability to communicate orally and in written form, using assistive technology if needed.
• Ability to keyboard/access and use technology resources and standard office equipment, without or with assistance.
• Ability to travel locally, nationally (air, train, car) and internationally with assistance as needed.
• Stamina to work extended hours, participate fully in conferences/meetings and otherwise engage with staff and stakeholders in different time zones.
• Moderate lifting (2-5 lbs.).

Travel: Travel to meeting sites, including meetings with industry partners, PPMD-hosted events, staff, Executive Administrative team and Board of Directors is required.

Compensation: $180,000 to $230,000 annually

Work Authorization/Security Clearance Requirements: Valid Authorization to Work in the United States.

Affirmative Action/EEO Statement:

PPMD provides equal employment opportunities to all employees and applications for employment and prohibits discrimination and harassment of any type without regard to race, color, religion, age, sex, national origin, disability status, genetics, protected veteran status, sexual orientation, gender identity or expression or any other characteristic protected by federal, state or local laws.

This policy applies to all terms and conditions of employment, including recruiting, hiring, placement, promotion, termination, layoff, recall, transfer, leaves of absence, compensation and training.

Other duties:

Please note this job description is not designed to cover or contain a comprehensive listing of activities, duties or responsibilities that are required of the employee for this job. Duties, responsibilities and activities may change at any time with or without notice.