Combining Patient Data with the Patient Voice: A Novel Approach

Sponsored By:
Rare Patient Voice and Clinakos

Wesley Michael, President and Founder, Rare Patient Voice LLC Inder Jaggi, CEO and Founder, Clinakos

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Companies spend billions of dollars on both procuring healthcare data and conducting market research with limited results. This problem is especially acute in oncology and rare diseases where patients are hard to find and their data is often lacking in syndicated or aggregated data sets. Qualitative and quantitative surveys provide useful but limited results since patients often do not remember details like diagnoses, medications, and lab results. Further, market research initiatives are disconnected from syndicated data sets and there is no way to link billions of dollars of RWD purchases with patients and HCPs who participate in market research and clinical trials.

Recent technological and regulatory changes have enabled a novel approach to combine real world data and market research. This includes linking qualitative and quantitative research with actual patient records across 90% EMRs, 99% pharmacies, 90% labs and other data sources with a coverage of over 320 million US lives and 90% of the US physicians/HCPs. Combining the patient’s actual medical data with their experience and opinions provides unique insights for pharma and market research and has the ability to enhance use cases such as chart audits, patient journeys, insights, HEOR, clinical trials, RWD and RWE. Join us in hearing about real world examples of how this approach is transforming the world of healthcare data and market research as we know it.

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About the Sponsors

Rare Patient Voice, LLC provides patients and caregivers an opportunity to voice their opinions through surveys and interviews to improve medical products and services. RPV has over 100,000 patients across more than 600 different conditions, both rare and non-rare, and has completed over 5,000 projects since 2013. For more information please visit Clinakos is dedicated to transforming healthcare through data and analytics. Our unique platform leverages disconnected health data from thousands of primary sources, linking it together for each patient, and generating meaningful insights. Since 2013, through our access to more than 320 million US lives, we have supported patient care, insights, market research, RWD and RWE. For more information please visit

For more information please visit