Patient-centered cancer research engages patients, family members, and caregivers as partners in the research process, so that issues of concern to patients like length and quality of life are addressed. When patients are bought into the process, research can be accelerated.
One example is MBC Connect, an app and digital platform co-created with patients to capture data about treatments and quality of life for women and men living with metastatic breast cancer (MBC).
Another example is co-creating a first-of-its-kind robust research engine — the Dr. Susan Love Research Army — which has engaged more than 300,000 people in research. Patients and their loved ones should be a part of the research creation process, such as engaging in focus groups to help design clinical trials that are responsive to patient needs.
People living with metastatic breast cancer (MBC) and passionate advocates demanded in 2013 more research focused on MBC. This led to the formation of the MBC Alliance to address these knowledge gaps.
Advocates wanted a prospective registry, among other research priorities, to better understand the patient experience of living with MBC and how their experience changed over time. After a thorough review of the literature and discussion with a dozen other patient disease-focused groups, the MBC Alliance chose to develop MBC Connect, using the Medaptive Health platform.
MBC Connect, available on iOS, Android and desktop, was designed by patients for patients, and empowers participants to contribute data by answering short surveys about their MBC experience, to receive custom-tailored insights relevant to their subtype of breast cancer, and be matched to clinical trials. MBC Connect enrolled 520 participants in 2018, its first year; enrollment, data collection and analysis are ongoing by the MBC Alliance today.
The idea for the Love Research Army was simple: Connect hundreds of thousands of women and men to scientists who need volunteers for their research studies.
Dr. Susan Love, a breast cancer surgeon and genius full of innovative ideas to fill knowledge and research gaps, approached Dr. Hurlbert and the Avon Foundation in 2008. The idea was simple: Gather hundreds of thousands of women and men willing to participate in research and connect them to scientists with studies in need of volunteers.
Together, Dr. Love, her staff, Dr. Hurlbert, and the Avon Foundation staff co-developed the Love/Avon Army of Women - launching on the Today Show plaza on October 1, 2008. Anyone could volunteer: people who had survived breast cancer, those in active treatment, or those volunteers who were otherwise healthy and had never yet had breast cancer.
In its first year, the Army of Women recruited 286,000 volunteers and linked 11,000 to 12 clinical research studies. Participants were recruited through mass media and social media campaigns, as well as through the Avon corporation army of Avon Sales Representatives, who talked about the program with their customers and handed out postcards across the U.S.
In 2010, TIME identified Dr. Susan Love, and the Army of Women, as a Patient 2.0 Pioneer. Twelve years after launch, the Love Research Army continues to this day to actively link volunteers to research studies in need.
