Patient Level Data especially in oncology and rare diseases provides a unique opportunity for pharmaceutical franchise leaders and launch teams. Access to hard-to-find patient populations tying qualitative and quantitative research to real-time linked patient-level medical records including EMR, Lab, Pharmacy, and SODH is key to taking important decisions pre, peri, and post-launch. With patient adoption increasingly becoming important to launch success, Clinakos is proud to enable this key capability for our large and small pharma clients.
Clinakos Inc. is extremely proud to share our capabilities with Wes Michael and his team at Rare Patient Voice to provide this one of kind offering for our pharmaceutical and biotech clients.
Over 2,100 registrants signed up to learn how patient data is disrupting life sciences product development and commercialization. The recording of THE POWER OF PATIENT DATA: New Opportunities for Life Sciences from Rare Patient Voice and Clinakos is is now available on LinkedIn at https://lnkd.in/dc_D7fZ6. This event is a must for pharma, biotech, medical affairs, MRX, HEOR, RWD, RWE, & clinical trials teams to leverage patient data, especially for oncology and rare diseases.
Contact us with questions, comments, or to arrange an informational meeting at: https://lnkd.in/g8D8syHk
Join Clinakos Inc. and Rare Patient Voice for “The Power of Patient Data: New Opportunities for Lifesciences,” a must attend for pharma commercial, medical affairs, market research, market access and HEOR teams to support new launches and existing franchises. Inder Jaggi and Wes Michael will be talking about recent technological and regulatory changes which open new opportunities for pharmaceutical, especially for oncology and rare diseases.
Clinakos CEO Inder Jaggi has been invited to present at CDISC’s 2021 US Interchange conference. The title of his talk is “Impact of HHS Final Data Blocking Rule on RWD/RWE Generation.” This talk describes the increasingly important role of RWD and RWE in biopharmaceutical research, drug approvals and label extensions. The FDA now has published frameworks for utilizing RWE to support drug approvals, new indications and post-approval studies.
The talk describes a potential method to link patient records across thousands of data sources through a common data model to yield high data accuracy and fidelity. Coverage includes generating Fit-For-Use Auditable data with longitudinal patient records integrated with PROs and Patient Surveys. It also includes approaches where the use of AI and Machine Learning can be leveraged for many current RWE use cases.
More information on the event can be found at: https://www.cdisc.org/events/interchange/2021-us-interchange
Clinakos and Rare Patient Voice’s webinar was one of Pharmavoice’s most attended webinars of the year. This webinar covered recent technological and regulatory changes that have enabled a novel approach to combing real world data with market research. 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.
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. Recent technological and regulatory changes have enabled a novel approach to combine real world data and market research. 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 Clinakos and Rare Patient Voice on September 14th in hearing about real world examples of how this approach is transforming the world of healthcare data and market research as we know it.
Patient Data for >100,000 Oncology & Rare Disease Patients across >600 diseases now available from thousands of primary sources, linked together for each patient, generating meaningful insights. Inder Jaggi of Clinakos Inc. and Wes Michael of Rare Patient Voice discuss how the power of patient data and experience is helping both patients and industry.
Patient recruitment company Rare Patient Voice has entered a partnership with data business Clinakos to combine patient survey insights with medical profile and behavioural data.
Patient Journeys and Insights based on Linked Patient Level Data
PALO ALTO, CA and TOWSON, MD, April 20, 2021
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 100,000 patients across 563 different conditions. https://rarepatientvoice.com
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
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.
Download the Case Study (PDF)
ASCO survey finds 60% of cancer clinical research programs halted screening and/or enrollment of clinical trials due to Covid-19 difficulties. Further, ASCO also finds Oncology practices reporting grave impact on their patients and their families. This is expected to have a wide ranging impact on how oncology drugs are developed and commercialized. Clinakos Inc. is supporting our pharmaceutical partners and patients with digital patient data and insight solutions to enable progress on development and commercialization virtually.
Patients with chronic and rare diseases are at the risk of getting severely ill from COVID19 according to WHO. Adherence and compliance to medications is more important than ever. Understanding the patient journey and providing digital patient solutions can help patients stay on therapy.
Clinakos has always believed that patients should have their data available to them and the new HHS (ONC and CMS rules) help take this forward.
“These rules are… opening up countless new opportunities for [patients] to improve their own health, find the providers that meet their needs, and drive quality through greater coordination.” HHS Secretary Alex M. Azar
Digital markers can help create personalized interactions with patients and HCPs in order to improve patient persistence on treatment. In today’s AMA Moving Medicine Podcast, Dr. Marie Brown says “We know that, if the patients don’t take their medicine, they’re never going to get their…chronic conditions under control.” Check out the video below to see how Clinakos Inc. is impacting thousands of patients’ lives and several pharma franchises by creating personalized digital markers for treatment persistence.
What’s health tech’s evolving role in cancer treatment?
Join the Clinakos Chief Medical Officer at Medcity CONVERGE 2019 where she will be on a panel discussing the work Clinakos is doing via our connected health platform to increase patient engagement in oncology.