American Cancer Society relies on QuestionPro's research community for breast cancer research

“By providing the research community, QuestionPro helps us save lives, study after study” Melissa Rittase, scientist

About the American Cancer Society

“Fight against cancer”

The American Cancer Society is a U.S.-wide nonprofit health organization dedicated to eliminating cancer as a major health problem. Headquarters are in Atlanta, Georgia. The organization also has regional and local offices in the USA. The mission of the American Cancer Society is to save lives, celebrate lives and lead the fight for a world without cancer. The American Cancer Society was founded in New York City in 1913 by 10 physicians and 5 volunteers. It was called the American Society for the Control of Cancer (ASCC). Back then, a cancer diagnosis meant almost certain death.

The history of the organization

In 1936, Marjorie G. Illig, an ASCC field representative and chair of the Public Health Committee of the General Federation of Women's Clubs, made an extraordinary proposal. She proposed creating a legion of volunteers whose sole purpose was to wage war on cancer. The Women's Field Army, as this organization was later called, was a tremendous success. In 1935, 15.000 people were involved in cancer control in the United States. At the end of 1938 there were about ten times as many.

Establishing a research community

The overarching goal of the American Cancer Society as a whole is to rid the world of cancer. As part of a large research community, the organization focuses on prevention and survival assistance and on improving the everyday lives of affected people. To this end, the American Cancer Society is conducting one of the world's largest longitudinal studies of behavioral data on cancer prevention. Recently, the ACS set out to better network the study's many participants and build a research community around them, with the aim of increasing the engagement and motivation of those affected to participate in the study to obtain more data faster and in less time for cancer prevention. In addition, the research community should be a place for those affected and their families to meet and exchange ideas. The American Cancer Society chose QuestionPro's research community.

Research Community Manager Melissa

We had the opportunity to follow Melissa Rittase at the American Cancer Society during her work with the Cancer Prevention Study-3 (CPS-3) cohort. Her task as manager of the research community is to manage the cohorts of the cancer prevention study and includes the following key areas of work:

• Contributions to study design
• Communication with participants in the research community
• Data processing and data management
• Promote engagement
• Designing the research community for the highest possible user-friendliness
• Development of surveys
• Preparation of the survey data obtained for analysis

As manager of the research community, Melissa also acts as a mediator and interface between community participants and researchers.

Challenges and goals in establishing the research community

The goal for building the research community was clearly defined: The main aim was to obtain more data of higher quality for the research study in a shorter time and thus accelerate cancer prevention. To do this, a large proportion of the study participants had to become part of the research community, which the ACS ultimately achieved through the efforts of the research community manager Melissa and due to the shared goal of the study participants.

Successful recruitment of study participants

The American Cancer Society Epidemiology Research Program invited men and women between the ages of 30 and 65 to participate in this historic breast cancer research study. The ultimate goal was to enroll at least 300.000 adults from throughout the United States and Puerto Rico into the research community. In December 2013, the organization completed initial enrollment for the CPS-3 trial with more than 304.000 participants.

Approach to conducting studies within the research community

Before the introduction of the research community, participants in the CPS-3 cohort received a 3-12 page paper questionnaire or a link to an online survey every 20 years, which could take up to 45 minutes to complete. The comprehensive study and the length of time it took to complete it understandably had a negative impact on the feedback response. The aim of introducing the research community was to reach study participants more frequently, but with correspondingly shorter and simpler feedback options. This enables the ACS to collect insights more regularly and quickly to make critical decisions based on real-time data more promptly and accurately than ever before.

Division of the study into several study sections

The new ACS research community not only enabled those responsible to obtain data for research purposes more quickly and in “smaller chunks”. In addition, through concrete surveys regarding the user-friendliness of the research community, the ACS was able to gain valuable data and insights into making the “user experience” so pleasant and positive that the commitment and motivation of the research community members to participate in the study increased . Below we describe the ACS approach.

1. When registering to participate in the research community: short survey about the registration process and first impressions of the research community (5 minutes)
2. One month after registration: short medical interview (10 minutes)
3. Two months after registration: Perform a Sit-to-Stand Test (STST) with a supporting video guide (10 minutes)
4. Three months after registration: Send a usability survey and research community feedback (10-15 minutes)
5. Four to five months after registration: invitation to provide and submit stool samples
6. Throughout the pilot: Collect information about newly diagnosed cancers and publish the results within the community

Success and outlook

The American Cancer Society has succeeded in obtaining more data in less time and in better quality with the QuestionPro research community. In addition, the ACS can share research results directly through the community and thus directly reaches people whose attention is far more sensitive to prevention through membership in the research community. In addition, the QuestionPro research community will also allow qualitative research studies to be carried out in the future, for example in the form of online focus groups.

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