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Cystic Fibrosis Foundation expands nationwide research with reduced effort

Cystic Fibrosis Foundation expands nationwide research with reduced effort

As the world strives to find a cure for cystic fibrosis (CF), the Cystic Fibrosis Foundation is dedicated to providing information that can accelerate that progress and improve the quality of life for those inflicted with the disease. Staff at the CF Foundation turned to SurveyMonkey Enterprise to tap into a broader informed community in an effort to inform research and other priorities and simplify the process of providing high-value insights to the CF community of patients, families, clinicians and other stakeholders.  

CF Foundation staff used SurveyMonkey Enterprise to underpin many of their community-based research efforts, including their highly successful ongoing Community Voice program. 

“We do very little without asking the community for feedback, and we need SurveyMonkey Enterprise to help us do it better, faster, and easier,” said Linda Brennan, senior director of community partnerships at the CF Foundation. “Our prior use of Microsoft Formstack left us blind in so many ways.”

The CF Foundation created Community Voice as a research vehicle to bring more voices into the foundation and help shape its work. The program enables the CF Foundation to continuously learn more about the people they serve and draw on their knowledge and insights to inform different projects within the CF community.

In 2019, the CF Foundation sought to expand Community Voice to reach more members and tap into a far richer and broader set of insights via expanded research initiatives. After using other solutions for years, they needed a more robust tool to meet their community-based research needs. “Our prior approach and tools lacked the flexible research design features of SurveyMonkey Enterprise, and it could not provide a central research practices hub in the same way,” explained Brennan.  

Many of the CF Foundation’s 700 employees across 77 offices had also been informally using SurveyMonkey for years and found it simple and powerful. By migrating to SurveyMonkey Enterprise, the CF Foundation aimed to standardize research practices, appear more professional in approach, gain simplified research customization, and leverage critical integrations to their CRM and data analysis platforms.

As an initial step, the CF Foundation used a simple API to integrate SurveyMonkey Enterprise into their Microsoft Dynamics CRM. Now when people join Community Voice via a SurveyMonkey sign-up form, their profile and interests are added to a profile in the CRM.  

The CF Foundation’s large-scale community engagement initiatives rely on SurveyMonkey Enterprise to inform everything the Foundation does, from the way the team prioritizes planned CF research, to how it selects the best method for engaging members to review and critique educational content. CF Foundation’s current 5-year strategic plan is based on a comprehensive study created and disseminated to members through Enterprise. In fact, the CF Foundation sent associated research to people beyond those who are normally affiliated with the formal Community Voice Program. “Without a doubt, the information gained from a broader representation, if not perfectly representative, informed where we set priorities in the care space, the research space, and our community programming space,” said Brennan.

Regional CF Foundation offices that lack survey expertise are logging into Enterprise and following best-practice survey designs and questions for local needs to gain community feedback on a range of issues. “That’s the beauty of having an Enterprise account,” said Brennan. “Chapter staff may only send out a  only a couple of surveys, but with Enterprise, instead of having to think about how to create a new survey from scratch, they can use the question libraries. That’s a big deal for making them fast and effective.”

Today, the CF Foundation benefits from a wide variety of community research projects via SurveyMonkey Enterprise, powering more than 80 projects per year. Consolidation into one enterprise-wide research account has brought numerous planned and unforeseen benefits. First and foremost is control. No longer does the CF Foundation suffer from “rogue surveys” that employees used to send out informally and without official CF Foundation branding. Everyone is now on the same page, and this prevents members from having to answer the same questions, multiple times, in different sets of research. “Giving members a simple and fast way to respond is really important, because we don’t want the community’s time being taken up by surveying,” said Brennan.

Employee awareness of a centralized research platform has also improved research quality. “It’s a springboard for having conversations with people about survey design and proper data sharing,” explained Brennan. Now, everyone commonly uses advanced SurveyMonkey Enterprise features like measuring statistical significance, coding comments, and copying question templates.

Finally, when it comes to discussions of the ROI associated with SurveyMonkey Enterprise, Brennan said people at the CF Foundation recognize that the platform saves time among a resource-constrained research team, and simultaneously, optimizes research design, participation and results. Ultimately, people really view it as a daily necessity.

“ROI wasn’t our first consideration, because SurveyMonkey Enterprise is necessary for doing what we do. It’s just like turning on the electricity at work.”

Linda Brennan, senior director of community partnerships, Cystic Fibrosis Foundation