Prioritizing Patient Engagement and Inclusion of Patient-Generated Covid-19 Data-Prioritizing Patient Engagement and Inclusion of Patient-Generated Covid-19 Data (Webinar)

Video Transcription

Video Summary

In a recent webinar hosted by Helen Burson, CEO of the Council of Medical Specialty Societies (CMSS), the focus was on COVID-19 and clinical registries, specifically examining how patient data can be leveraged to transform clinical practices and response strategies. Featuring panelists from diverse backgrounds, the session delved into innovative methods for patient engagement and data collection to improve pandemic preparedness and response.<br /><br />Gary Wolf, co-founder of Quantified Self, discussed the concept of self-registration, emphasizing personal science where individuals use empirical methods to explore personal health questions. He highlighted the importance of observation-focused data and flexible, self-directed purposes rather than predetermined scientific questions.<br /><br />Gina Ossoff and Hannah Davis from the patient-led research group within BodyPolitik shared their experience with creating a survey for long COVID sufferers. Developed from a support group, their work captured extensive patient-generated data, revealing critical insights about symptoms, relapses, and the testing disparities. They are working towards more inclusive surveys with an IRB process for greater validation.<br /><br />Emily Sirotich, representing the COVID-19 Global Rheumatology Alliance, highlighted their patient experience survey which gathered data from over 13,000 respondents across 100 countries. The survey was designed through collaborative efforts between patients and clinicians to capture both clinical and patient-important outcomes, focusing on the impact of COVID-19 on rheumatic disease patients.<br /><br />The panelists shared their experiences working across borders and the importance of multidisciplinary teams. They agreed on the need for broader institutional support to integrate patient-led research into traditional biomedical research, advocating for patient-centric models and new funding structures to support these efforts.<br /><br />The session underscored a future of collaborative, patient-centered research as essential for pandemic preparedness and response, calling for systemic changes to include patient expertise in scientific advancement.

Asset Caption

This webinar will provide perspectives on:
How people living with health conditions are reliable sources of information and can contribute to the advancement of society through research, particularly in the investigation of complex and novel diseases.
Preparing for the future of integrated registries, driven by key partners and data providers, including patients and caregivers.
Building a biomedical research enterprise that incorporates self-collected time-series observations generated by patients.
How networked patients can help amplify the work of clinical registries and guide frontline clinicians to the latest research.

Keywords

COVID-19

clinical registries

patient data

pandemic preparedness

self-registration

long COVID

patient-led research

BodyPolitik

rheumatic disease

multidisciplinary teams

patient-centric models

funding structures