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.
Rare Patient Voice and Clinakos Launch a Patient Level Data and Insights Solution across 563 Rare Disease and Oncology Indications
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.
According to the World Health Organization, these individuals are most at risk if they catch COVID19
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 Medical Director, Kamal S. Ghei, MD, is fighting on the frontlines to treat COVID19 patients at SF Bay Area hospitals
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.
Patient Adherence & Drop Offs: The Untold Story
The day has finally arrived!
It has taken 10 years, thousands of people, and over $1.2 B to bring this drug therapy to market. The FDA approval was a big celebration at the company and patient advocacy groups alike. Another $312 million was spent in post-approval development. The scientists are especially proud of conquering yet another disease frontier. Doctors are excited that they now have a new treatment for their patients, who have been suffering without hope thus far. The manufacturing plant is churning out aseptic, neatly labeled bottles filled with the new drug. The launch team is ready with educational materials and conference presentations. The nurse educators, reimbursement specialists and patient assistance program are ready to help patients cross the last mile to treatment.
Somewhere inside an elated bio-pharma company is a conference room whiteboard with a tally. A new tally mark commemorates every new prescription of the coveted new drug therapy. Everyone is excited about the impact they’ve helped create on lives of patients. The market projections look like a hockey stick. The management and investors are all eager to see the valuation uptick.
But wait…what’s happening? Only a few weeks down the line, the launch isn’t going as expected and the revenue misses projections. Then someone realizes that even though there are a high number of new prescriptions, existing patients are rapidly dropping off treatment!
Prepared for this, the biopharma commercial team runs adherence calculations on their specialty pharmacy data to identify patients who are late on refills and provides them reminders through personalized calls. But even this is not as effective as anticipated. Everyone has the same question on their minds: “Why are patients dropping off our drug?”
Our industry often (incorrectly) assumes that patients don’t adhere to therapy because they forget to take medications. In fact, there are a multitude of complex reasons that result in non-adherence to therapy. Perhaps the patient lives too far from their doctor’s office or the regimen is too complex to follow. Maybe the side effects aren’t being managed properly. They may also have changed their insurance mid-year and lost coverage for the drug. In fact, one of the best predictors of a patients’ adherence to their medications has been their drug adherence habits/history measured from other medications they have taken in the past.
The good news is that the reasons for non-adherence are usually addressable once identified. The current practice of calling patients to remind them to continue taking medications is inadequate. The complexity of patients’ individual reasons for non-adherence requires that the solutions be customized. With comprehensive, near real-time, 360 degree patient level data and clinically informed analytics, the biopharma team can gain insights into the non-adherence drivers for franchise patients and take actions accordingly.
Such a patient-centric approach requires an understanding of several factors that include patients’ demographics, concomitant medications, treatment history, daily behaviors, prescribers, health plans, and pharmacies. Linking patient specific data from a variety of data sources into a common view can help glean a three dimensional understanding of the patient. However, one must be confident that the linked data belongs to the same patient. Very often, probabilistic approaches link de-identified data from different sources creating imperfect matching (60-85% probability based on algorithm used). Such linkages can lead to misleading insights, consequently leading to costly mistakes instead of cost-effective problem solving.
Once the 360 degree patient level data is curated and collated, visualization techniques, interactive data exploration tools, and predictive modeling can help segment patients, thereby giving specific addressable insights. For example, for one particular franchise we worked with, patients were dropping off the franchise drug because the prescribing physician, a tertiary provider, was not adequately managing or preparing them for the side effects. Understanding this issue led to a physician education program for the physicians to co-prescribe certain support medications to mitigate side effects. For another franchise we assisted, the drug was an in-office injectable drug. 360 degree analyses revealed that one of the key drivers of patient drop off was their distance from their doctor’s office. The solution was a transportation voucher to patients. Yet another franchise facing drop offs had a drug which had to be given to patients as a combination therapy with other drugs. Our analyses revealed that the patients were receiving shipments of the different drugs in the regimen at different times. This caused the treatment to go off synch and affected outcomes, eventually leading to drop off. The solution was to co-package or co-ship the regimen drugs from the same pharmacy.
Each of these situations required a different intervention, tailored by franchise, and even by patient. At a time when most biopharma franchises have extensive touch points with patients through patient support programs, it is feasible to deploy such interventions systemically.
Clinically meaningful analysis of 360 degree patient level data can reduce patient drop offs, ensure achievement of revenue projections and result in the best outcomes for patients. The key is understanding the realities of patients’ lives and their journey through treatment, not just making assumptions.
Dr. Deepti Sodhi Jaggi
Pharma/Digital Health Executive/Board Director