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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. Researchers at the CF Foundation turned to SurveyMonkey Enterprise to tap into a broader informed community of people in an effort to establish research priorities and simplify the process of providing high-value insights back to the CF community of patients, families, clinicians and other stakeholders.  

CF Foundation researchers used SurveyMonkey Enterprise to underpin all 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.”

Having the best CF data in the United States is core to the CF Foundation’s ability to lobby the US Congress for support and better the lives of their entire member community. “We will never rest until the cure for cystic fibrosis is here and accessible to all,” stated Brennan.

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 Formstack for years, the team knew the Microsoft tool could not support their advanced research needs. “The tool was really basic. Formstack not only lacked the flexible research design features of SurveyMonkey Enterprise, it could not provide a central research practices hub in the same way,” explained Brennan.  

“We turned to SurveyMonkey Enterprise to both obtain expanded insights and to help us decide which research methods we should even use, like surveys, focus groups and forums,” said 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.

Integrating technology and people for more strategic research 

As an initial step, the CF Foundation used a simple API to integrate SurveyMonkey Enterprise into their Microsoft Dynamics CRM. Now when people respond to research requests in Community Voice, their name and email address are added into their profile. 

The CF Foundation also leverages SurveyMonkey Enterprise for anonymous research. Responses are integrated into CRM for general analysis of community insights, such as experiencing infections with certain courses of CF treatments. “We can find such correlations when searching by functionality within SurveyMonkey Enterprise,” said Brennan. 

SurveyMonkey Enterprise now serves as the basis for the CF Foundation’s recruiting of community members onto the CF Foundation committee. Brennan’s team sends applications to all members as well as interest forms to focus groups via Enterprise. The platform allows for defined grouping to determine who receives each communication/response form.

The CF Foundation’s large-scale research initiatives rely on SurveyMonkey Enterprise and impact 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 research expertise are logging into Enterprise and following best-practice research designs (sometimes copying them directly) for their own local research to gain clinician and staff feedback on a range of issues. “That’s the beauty of having an Enterprise account,” said Brennan. “Branch offices only send out only a couple of surveys, but with Enterprise, instead of having to think about how to create a new survey from scratch, they all definitely use the question libraries and the admin dashboard. That’s a big deal for making them fast and effective.”

Core CF Foundation research teams also benefit from seeing how branch offices are performing localized research. “Our core research teams certainly have survey methodology experience,” explained Brennan. “Yet, we also benefit from seeing other surveys to learn what information is being sought. It helps us advise people on how to optimize their own special research designs.” 

Transforming research into indispensable utility 

Today, the CF Foundation benefits from a wide variety of research 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