ISCBacademy webinar on Patient-Led Research
Date and Time: Tuesday, March 14, 11am EDT/ 15:00 (not 16:00!) UTC
Location: Online webinar hosted by ISCB and free to the public. (Video now available at https://youtu.be/M2vAotWKd_Q)
Speaker: Hannah Wei, co-founder and technologist at the Patient-Led Research Collaborative
Topic: Re-Thinking the Patient’s Role in a Learning Health System: Lessons from the Patient-Led Research Collaborative
The ISCB, which runs the annual ISMB conference, is offering a series of ISCBacademy webinars hosted by the Communities of Special Interest (COSIs), which include BOSC/OBF. These webinars are now open to the public; you’ll just need to create an ISCB Nucleus account to register for the webinar.
So often, a patient’s role in research has been limited to the donor of data and receiver of care, limiting the possibilities in between for participatory methodologies and open science collaboration.
This webinar will be a case study of the patient-led research model. We will explore how the model was formed under the context of those with COVID-19 developing their own research capacity to study Long COVID, or Post-Acute Sequelae of COVID (PASC). We will present the levels of patient-involvement, data ownership and access principles, and accommodations for disabled contributors from our community. We will further discuss how patient-generated data can guide research direction and inform research hypotheses, while patients’ lived experiences, experiments and own research can enrich a learning health system. We will suggest ways to incorporate patient-led research models into open science innovations.
The talk will be delivered by Hanna Wei, a patient-researcher, co-founder and technologist at the Patient-Led Research Collaborative, a multi-disciplinary, patient-run organization dedicated to placing patient voices at the forefront of Long COVID research.
Hannah Wei is a co-founder at the Patient-Led Research Collaborative, an international organization of Long-COVID patient-researchers and advocates at the forefront of the Long COVID patient-led movement.
Since the beginning of the pandemic, PLRC has brought together an interdisciplinary team of patients with backgrounds in medicine, neuroscience, participatory design, public policy, cognitive science, research engineering, data science, biostatistics, virology, psychiatry, neurology, pediatrics, and social epidemiology. PLRC has collaborated with the Long COVID taskforce at the WHO, CDC and co-authored over a dozen papers, including the paper on Characterizing long COVID in an international cohort: 7 months of symptoms and their impact published in the Lancet.
Hannah’s background is in computer science and leading data-driven products for the technology industry. Before the pandemic, Hannah was running field research in frontier communities of West Africa and Southeast Asia for product innovation teams at Fortune 500 tech companies. She became a Long COVID patient after getting infected on an airplane in March 2020. Since then, she has dedicated her efforts to running projects PLRC and innovating on the patient-led research model.