Community Engagement Project Lead, Research

The Cystic Fibrosis Foundation is a leading healthcare nonprofit organization like no other. For decades, we have been taking major steps and pioneering new ways to advance the mission to find a cure for cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.

We are the global leader in the search for a cure for cystic fibrosis and nearly every CF drug and therapy available today was made possible because of CF Foundation support.

We did this not only for the close to 40,000 people living in the U.S. with CF - and the estimated 105,000 people worldwide - but for the people with CF and families who have worked tirelessly to support the mission.

These achievements have required dedication and unwavering commitment from a talented team of CF Foundation employees. We promote an environment that attracts and retains a diverse group of talented people who are passionate about eradicating this disease .

Join us and you will join an amazing team, devoted to our community, and our mission.

Position Description

The Cystic Fibrosis Foundation (CF Foundation) and its employees embrace their commitment to its core values. These core values are the pillars on which the CF Foundation stand and will continue to sustain us as we move forward.

Keep sight of what really matters : Our decisions are based on what is best for people with cystic fibrosis and their families.

Aspire for excellence in all we do : We take pride in our work. We are committed to continuous learning and improvement.

Stronger together : We collaborate and work together so that we can learn more and achieve more.

Innovate with courage : We embrace challenges. We reach beyond boundaries in pursuit of our vision.

Care about our people : We deeply care about each other and all who support our shared mission. We listen with respect. We support one another.

We are a nonprofit, donor-supported organization that has raised and invested billions of dollars to help develop cystic fibrosis therapies that have changed the lives of people with this disease.

Nearly every CF medicine available today was made possible because of Foundation support.

POSITION SUMMARY :

The Cystic Fibrosis Foundation's (CFF) Community Partnerships department supports people with cystic fibrosis and those directly affected by it.

Within the Community Partnerships department, the Community Voice program connects people with cystic fibrosis and their families with opportunities to share their experiences, perspectives, priorities, and knowledge to influence and impact CF research, care, and programs.

The Community Engagement Project Lead, Research manages assigned projects as part of the Community Voice program. The Project Lead enables CFF and external stakeholders (researchers, clinicians) to partner with the CF community by consulting on best practices for community engagement, helping to design effective opportunities for community members to provide insights and share their experiences.

The Community Engagement Project Lead, Research supportscommittee recruitment, focus groups, survey projects, and other methods of community engagement.

The Project Lead conducts the analysis and presentation of community insights to inform priorities and programs, including the design of community-based research.

This is a hybrid role based in Bethesda, MD, and requires 2-3 days per week in the Bethesda office.

ESSENTIAL DUTIES AND RESPONSIBILITIES :

Serves as a primary contact for Community Insights and partners with assigned departments, internal and external stakeholders.

Collaborates with assigned departments and stakeholders to assess needs and support clinical research community across multiple avenues.

Builds and sustains productive relationships with internal and external research stakeholders to identify emerging research topics, and opportunities for collaboration and community input.

Educates and consults on appropriate strategies, methodologies, and approaches to engage people with CF and other members of the community in stakeholders' work to leverage the value of Community Voice.

Solicits and integratescommunity insights and / or involvement in groupsand initiativesacross the Foundation and Foundation-funded projectsthrough committee recruitment, focus groups, survey projects, and other engagement.

Conducts and supports qualitative research, including analysis and qualitative data gathering (interviews, focus groups).

Supports quantitative research and analysis in partnership with the Data and Analytics team, including :

• Proposes strategies to engage patients in support of real world and patient-centered research goals, conduct quantitative and qualitative analysis of research data and present data to inform insights and decision making;
• Identifies relevant existing data to inform new data collection in support of internal client projects;

Ensures results and insights from work are curated and included in data repository for future use and reference.

Supports team-wide initiatives, including program communications, growth strategies and activities, leads Foundation-wide information sharing efforts on insights-related topics, co-lead community conference session(s) related to research and community input.

KNOWLEDGE, SKILLS AND ABILITIES REQUIRED :

Bachelor's degree required, related field and / or master's degree preferred. (Related fields of study include social sciences, public health, health equity, public policy, communications, sociology).

Minimum of six (6) years of related experience.

Experience in health equity and diversity and inclusion strongly preferred, prior experience reaching and engaging underserved communities preferred.

Spanish language skills preferred, but not required.

Strong project management skills and ability to manage complex projects.

Qualitative analysis experience, including content analysis, coding, and report writing.

Experience with applied primary research and insight generation, including qualitative research methodologies (interviews, focus groups, etc).

Strong computer skills, including the ability to plan and execute effective online meetings and discussions, and the ability to develop and deliver effective, data-oriented presentations (Zoom, MS Teams, Excel, PowerPoint;

data visualization tools).

Knowledge of emerging strategies for patient engagement and community-based research methods; prior experience preferred.

Ability to communicate clearly, concisely, and effectively orally and in writing, including tailoring communications to different audiences with appropriate level of technical or non-technical detail.

Understanding of the physical and mental health manifestations of CF preferred.

Ability to communicate effectively and establish effective working relationships with diverse stakeholders.

Ability to analyze qualitative and quantitative data and make data driven recommendations.

Ability to exercise judgement in identify risks to be escalated to Director, Community Insights and Partnering.

REPORTING RELATIONSHIPS :

Reports to the Community Voice Program Manager. No direct reports.

WORKING CONDITIONS :

Standard office environment, travel, events / meetings, etc.

The above is intended to describe the general content of and requirements for the performance of this job. It is not to be construed as an exhaustive statement of essential functions, responsibilities or requirements.

Total Rewards : The CF Foundation is committed to offering competitive compensation (base pay and incentive), benefits, and professional development opportunities that maximize our ability to recruit, retain, reward, and motivate a highly-qualified and diverse workforce.

• Our comprehensive benefits package includes medical, dental, and vision coverage; generous time-off and leave policies; a holistic well-being program;
• health savings and flexible spending accounts; employer-provided life and disability insurance; retirement savings benefits;

and a variety of work-life benefits to support employees and their family members.

The CF Foundation is an equal opportunity employer that is committed to being an employer of choice, not just a good place to work, but a great and inclusive place to work.

We strive to recruit and maintain a diverse workforce. Qualified applicants will receive consideration for employment without regard to race, physical or mental disability, color, religious creed, ancestry, national origin, religion, age, sex, marital status, genetic information or testing, gender identity and expression, sexual orientation or status as a Vietnam-era or special disabled veteran or any characteristic protected by law.

Reasonable Accommodations : The CF Foundation is committed to providing reasonable accommodations for qualified individuals with disabilities in our job application procedures.

If you need assistance or would like to request an accommodation due to a disability, please contact us at [email protected].