Creating robust patient journeys for rare disease patients is challenging. Rare disease patients are very difficult to find. Their data is often lacking in syndicated or aggregated data sets due to the rarity of the conditions. Even when the patients can be found, it is difficult to ensure that their relevant medical data is properly captured. Current qualitative and quantitative research techniques produce unsatisfactory results. Patients often are not aware of or can’t remember their current and past medical details (like their medications, treatments, exact diagnoses).
With all these difficulties in mind, we picked an extremely rare oncology indication with an aim of understanding patient journeys for this population.
Clinakos partnered with Rare Patient Voice (RPV) to facilitate insights for this rare oncology indication. RPV has signed up over 100,000 patients to participate in research across 496 diseases. This access created a unique capability to obtain a cohort of patients who were excited about contributing to research.
Armed with patient authorizations, Clinakos was able to leverage their integrations across the healthcare ecosystem (which includes all major EMRs, Pharmacies, Labs, Devices and Socio-Economic sources) to gather all of the relevant data on these patients, creating a digital twin for each patient. These were used to create the patient journeys on
these rare oncology patients.
Of the rare oncology patients who showed initial interest, 71% authorized us to gather their medical data. Of the recruited 71%, we were able to gather data on all of the patients. We found electronic documents for these patients ranging from 2008 to 2021. The patients averaged 127 different charts per patient often spanning multiple healthcare systems, physicians, payers, labs, pharmacies and other institutions.
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