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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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      • Epilepsy
      • Non-Small Cell Lung Cancer
      • HIV
  • Blog
    • Patient Blog
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  • Sign In
  • Case Studies
    • The Long and Winding Road to Care
    • Health Literacy Initiative’s PSA
    • Patient Perspectives on Clinical Trial Participation
    • Patient Journeys and Insights for Oncology and Rare Diseases
    • Market Access: A Patient Perspective
    • The Impact of Rare Diseases on Patients and Caregivers
    • The Role of Patient Advocacy Groups
    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Patient Journeys and Insights for Oncology and Rare Diseases

The Challenge

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.

Our Solution

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.

Results

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.

Download Case Study

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