Dedalus plays integral role in support of groundbreaking All of Us Research Program
By Lynda Malik-Gagnon
The All of Us Research Program is a groundbreaking effort administered by the National Institutes of Health (NIH) that is gathering health data on one million participants in the United States to gain insights for treating diseases and improving health outcomes. Dedalus has proudly supported the All of Us Participant Center since national enrollment for the program launched in 2018, leveraging our strategic partnerships with industry leaders such as ServiceNow.
All of Us participants play a significant role in helping improve the lives of future generations and as part of the Wearable study could receive a new Fitbit Versa 3 or Charge 4 to wear at no cost.
Participants who have donated blood or saliva samples could also have access to genetic ancestry and trait results at a later date and can stay up-to-date on the developments in health and medical research with the exclusive My Medical Minutes newsletter.
Customer service is key because the volunteer participants serve as the backbone of the research initiative. Participants in All of Us take surveys to share information about their health, habits, and what it is like where they live. Researchers can use the information to identify patterns with the goal of gaining a greater understanding of why people get sick or stay healthy.
Data collected is combined with participants’ health history, genetics, and other characteristics to provide insights into how biological and lifestyle differences impact health. The data can be used by researchers to drive studies on cancer, diabetes, infectious diseases, and more.
Among the core values of the All of Us Research Program is to engage participants that reflect the rich diversity of the U.S., including those from communities that are historically underrepresented in research. By analyzing information from a wide range of people, researchers can make new discoveries that may one day lead to more precise treatments and prevention strategies based on people’s individual differences.
Scripps Research Translational Institute was selected by NIH to lead the program’s Participant Center, which manages the enrollment of participants who do not have access to one of All of Us’s participating healthcare provider organizations. Dedalus has played an integral role in the success of the Support C enter Scripps Research operates to maintain ongoing communication with All of Us participants.
The S upport C enter handles incoming calls for general questions about the program, as well as providing some of the technology and protocols used to engage, enroll, and communicate with current and potential participants.
This operation also serves as a vital communication tool for outreach to participants via a multimodality capability in multiple languages. Dedalus supports the center’s use of support tools, including ServiceNow as a workflow engine, to meet the U.S. government’s FedRAMP and FISMA Moderate security requirements. Each participant-facing team member is trained in HIPAA, as well as privacy and security requirements. Even though the support center relies heavily on advanced technology, it also provides the human touch for communicating with participants, who have the option of using email, chat, or phone.
Staying in touch
All of Us is powered by its participants and the support team is dedicated to serving them with compassion, empathy, and care. The participant support team takes a service-oriented approach by always keeping in mind, “they may not remember your name, but they will remember how you made them feel.”
Dedalus is working in close collaboration with Scripps Research to support a recontact campaign that is being used to stay in touch with participants. Another goal of the recontact initiative is to see if participants who provided biosamples would like to receive their DNA results from the program.
The Dedalus team collaborated with the NIH All of Us security team to develop standard operating procedures for the reconnect campaign and implemented an API communication tool that enables automated outbound calls. The campaign has increased the overall volume of communication at the Support Center and a large number of participants’ contact information is being updated.
Most Americans living in rural areas are typically left out of healthcare-related research because they do not live in close proximity to large universities and academic hospitals. Providing a reliable way to communicate with All of Us participants who do not live near one of the program’s participating healthcare provider organizations sites is critical to the success of the program. Through the joint efforts of the NIH, Scripps Research, Dedalus, and our technology partners, we are providing a way for participants to partake in the program from the comfort of their own home.
The All of Us Research Program is part of a federal Precision Medicine Initiative that focuses on a future where healthcare can be better tailored for individuals. Dedalus is proud of the role we have played in helping the program build trust among its participants. Our expertise in areas such as IT security and in developing systems that meet stringent privacy requirements has contributed to the program’s success.
Recently, All of Us surpassed 370,000 participants, and the program is well on its way to achieving its goal of one million. New program activities are being implemented every year; for example, as part of a recently launched W earable S tudy, selected participants are receiving a Fitbit device at no cost. The goal of the Wearable Study is to learn more about how people engage with wearable devices to help inform future research. Additionally, the virtual clinical study will generate a data set that presents a unique opportunity for the research community to explore the relationship between physical activity, heart rate, sleep and other health metrics, along with health outcomes as part of the broader All of Us program.
Lynda Malik-Gagnon has 40 years of healthcare information technology experience. She is currently the Delivery Business Operations Leader for the North America region. Previously at DXC Technology, she was a healthcare solution leader and part of the marketing team for Healthcare and Life Sciences.
Prior to DXC she was a senior manager in the health delivery business unit at First Consulting Group where she led quality improvement activities for the healthcare practice.