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"Life science companies seeking further advances toward a truly patient-centric future should consider working with an external partner that has extensive experience and a reliable, transparent and proven information portfolio. Leveraging core data linked and integrated with data generated by patients, and providing access to novel, on-demand data sources through a network of curated data partners provides enriched data that goes beyond the patient experience with a particular brand. By understanding the full details of the patient journey, optimal engagement of patients and HCPs can be enabled, thereby delivering the right treatment to the right patient, supporting adoption and adherence and achieving the ultimate goal of patient-centricity."

Abstract: Protocol design complexity, and associated study volunteer burden, negatively impact patient recruitment and retention as well as overall research and development productivity. Complex protocols reduce the willingness of potential clinical trial participants to enroll and reduce retention rates. There have been few systematic assessments of protocol design characteristics to determine the burden placed on study volunteers, although such an assessment would offer a compelling opportunity to optimize trial designs and improve recruitment and retention performance. To be useful, an assessment would need to be patient-centric, and focused on the factors that influence participation throughout the clinical trial. Such an assessment would also need to accommodate the unique cost-value trade-off compared with current treatment patterns that each participant makes when choosing to participate and remain in a clinical trial. This article proposes a new methodology to quantify patient burden: the clinical trial patient friction coefficient (PFC). A case example is provided to illustrate the utility of the PFC. A number of applications for the PFC are envisioned: standardizing patient burden assessment to evaluate clinical trial design feasibility, shedding light on the impact of patient burden on clinical trial economics and performance, and conducting sensitivity analyses to identify factors that most reduce patient burden and improve the performance and efficiency of clinical trials. Key words

"Cahana broke down the possibilities presented by distributed ledger technology. "Blockchain offers an operational environment that allows us to analyze data at its source. We don't need to create these huge data banks that can be hacked and manipulated. We don't need to bring the data to the algorithm, the algorithm can go to the data. It is called federated learning which is like machine learning together with privacy-preserving technologies," said Cahana. "The idea of introducing a whole token economy into healthcare is to transform people from health service consumers to health and wealth producers. As opposed to artificial intelligence (AI), machine learning, genomics, telemedicine, and all these things that are innovative and are general-purpose technologies that make things faster, better and cheaper, blockchain really is disruptive in the business model. It really transforms digital healthcare from patient-centric to patient-driven. People can drive their own health similar to how they invest in their wealth.""

"Optimize for Time, Cost, Risk, and Patient Centricity Think of Trials.ai as the best second opinion you've ever had. The result is an optimized trial that ultimately enables a new treatment to reach patients faster- all through the lens of time, cost, and patient centricity powered by our Patient Burden Index™. ‍ Our system also looks for potential pitfalls that might need to be flagged and adjusted. Get feedback about how each decision you make affects:"

RARE‐X is committed to transforming rare disease by ensuring that patient communities, clinicians, researchers, and drug developers have access to the right data at the right time. At the heart of RARE‐X's approach is a belief that patients should own their data. In July 2021, RARE‐X launched itsfirst set of rare disease pilot programs on its data collection platform supported by data governance and consent that will ensure participants who spend the time to enter their data are able to share it with those stakeholders they choose.