Written by Matt Horsnell, Community Manager, TREND Community
TREND Community is a leader in evidence acceleration through social data exploration for rare and chronic illnesses. Patient Worthy is at the forefront of online rare disease content, providing relevant information to rare disease patients, caregivers, and advocates alike. The shared goals and focus on supporting our communities drove the desire to collaborate through TREND Community.
What Is TREND Community, and How Are They Accelerating Evidence and Promoting Data?
TREND Community’s bold vision is to revolutionize the world’s understanding of diseases so we can find treatments and cures for every single one. TREND harnesses the power of artificial intelligence, machine learning, natural language processing, and computational linguistics to unlock the wisdom of a community’s dialogue. At TREND, we believe in the power of participant-contributed, real-world data. This technology leverages social media to better understand disease burden. TREND Community quantifies untapped real-world data to inform patients, contribute to medical product and research discoveries, and build personal natural histories.
People with rare diseases and their caregivers are experts on their own lived experiences. They share countless comments and nuggets of wisdom daily online in open and closed groups. These insights are available to members in these communities, but the wisdom is not easily searchable and often is not accessible to everyone with the particular condition. TREND Community is able to partner with administrators of these social media communities to unlock the depth of wisdom that is being shared. TREND’s analytics engines glean insights from patient and caregiver stories, journals, discussions, polls, and surveys.
TREND uses its analytic tools to create community reports based on the insights gathered from social media. The information can reveal new insights and approaches to improve the quality of life for the community. This unique approach amplifies the community’s voice—it offers a “microphone” for the collective conversation taking place. This process reveals evidence that can be used to accelerate research, identify new approaches to living with rare diseases, and provide the medical community with a better understanding of a particular condition. TREND Community, in collaboration with the communities it serves, has authored white papers, published its findings in peer-reviewed journals, and identified new areas for research.
How Does TREND Community Value and Support Our Communities?
TREND Community values transparency and maintaining the anonymity of community and individual data. The information used is deidentified, meaning that personal information is removed from the raw data. TREND has gone through the rigorous vetting process to become certified as a B Corp. B Corp Certification is a designation signifying that a business meets high standards of “performance, accountability, and transparency” with regard to charitable giving, inclusivity, and environmentally sustainable progress. TREND Community invests in the rare disease communities it serves by providing reports and landscape analysis on its findings.
Who Is TREND Community?
TREND Community was founded by Maria Picone (CEO) and Christopher DeFelice (CTO). They founded TREND after their child was diagnosed with Prader-Willi syndrome. At the heart of TREND is ingenuity and a team that reflects the passion of its founders. The team includes researchers, data scientists, medical professionals, and community advocates with personal and professional connections within the rare disease community. Many of TREND’s team members are living with rare diseases or serve as caregivers for those living with them. Our passion is purpose and solution driven, fueled by our connections with the rare disease community.
How Can a Community Get Involved?
TREND Community partners with administrators of social media groups to begin archiving data. As that process begins, TREND will work with the community to answer any questions that may arise and reassure them of the confidentiality and anonymity of the process. Once there are sufficient data, the analysis can begin, followed by interpretation of data and identification of the next steps for exploration. Every step of the process is a collaborative effort, with an emphasis on empowering community members to the fullest extent.
Some who collaborate with TREND have the opportunity to participate in clinical trials, and some have the skills to be a public speaking storyteller—but everyone has the ability to accelerate progress with the power of their voice. The desire to contribute to a brighter future for our communities is a cornerstone of the rare disease family. At TREND Community, we value each person’s story, and we empower communities to actively shape their own future. Check out our website to join our community for connection, support, and sharing.
