Rare Patient Voice (RPV), the leader in patient-focused recruiting, and Clinakos, the market leader in linked patient level data and insights, are pleased to announce an industry-first collaboration designed to combine the patient voice with actual patient data. This innovative partnership brings together Rare Patient Voice’s patient community and Clinakos’ cloud platform which consolidates a patient’s complete medical and behavioral profile through aggregating their medication, lab, genomic, device, EMR and wearable data to create complete and linkable Patient360 profiles.
Now, insights from patient interviews and surveys can be combined with each patient’s medical and behavioral profile to provide a complete and accurate picture of the patient journey. Bringing Clinakos’ intelligent connected cloud platform with medically smart AI technology to RPV’s panel of oncology and rare disease patients creates value for both patients and life sciences companies.
Wes Michael, President of Rare Patient Voice said, “We are excited to be part of this next step into sharing the complete patient experience with industry. Including patient insights along with patient data provides a robust picture which has not been available until now!”
“We are pleased to partner with Rare Patient Voice on this important work,” said Inder Jaggi, Founder & CEO of Clinakos. “Patient Insights, Real World Data (RWD) and Real World Evidence (RWE) for oncology and rare diseases have been historically hard to obtain. Linking the full medical record with patient insights will enable more accurate decisions for clinical development, medical affairs, HEOR and commercial teams.”
About Rare Patient Voice
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 125,000 patients across different conditions ready to be deployed to lung cancer clinical trials around the world. https://rarepatientvoice.com
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 125,000 patients to participate in research across rare and non-rare 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 and the respective lung cancer clinical trials they were a part of.
About Clinakos
Clinakos’ unique platform leverages vast amounts of disconnected health data to power patient care. It curates historical and real time healthcare data from hundreds of primary sources, links it together for each patient and generates meaningful insights using cognitive technology. Clinakos provides linked patient records across 90% EMRs, 99% Pharmacies, 90% Labs with coverage of over 90% of the US population. https://www.clinakos.com
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.
