Patient-Driven Medical Innovations: Building a Precision Medicine Supply Chain for All

Kingshuk K. Sinha, PhD (Department Chair and Mosaic Company-Jim Prokopanko Professor of Corporate Responsibility Supply Chain and Operations Department, Carlson School of Management, University of Minnesota)

This post is part of a series on how patients are creating the future of medicine.  The introduction to the series is available here, and all posts in the series are available here.

While the promise and potential of precision medicine are clear, delivering on that promise and making precision medicine accessible to all patients will require clinical adoption and a reliable and responsible supply chain. We already know this is a big problem in pharmacogenomics technology; the science is advancing rapidly, but clinical adoption is lagging. While Big Data can be a powerful tool for health care – whether it be an individual’s whole genome or an online aggregation of information from many patients with a particular disease – building implementation pathways to analyze and use the data to support clinical decision making is crucial. All of the data in the world doesn’t mean much if we can’t ensure that the development of precision medicine is linked with the efficient, safe, and equitable delivery of precision medicine.

Effective implementation means addressing the stark realities of health disparities. Leveraging citizen science to develop and deliver precision medicine has the potential to reduce those disparities. Citizen science complements more traditional investigator-driven scientific research and engages amateur and non-professional scientists, including patients, patients’ families, and communities across socio-economic strata as well as country boundaries.

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Lydia Nicholas on ‘The Week in Health Law’ Podcast

By Nicolas Terry and Frank Pasquale

Subscribe to TWIHL here!

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This week we welcome Lydia Nicholas, a Senior Researcher in Nesta’s Collective Intelligence team, who is exploring new forms of knowledge production and problem solving that are emerging from the collaboration of networked publics, institutions and organizations. We focused our discussion on the use and abuse of health data. Lydia is based in the UK, where some recent incidents involving data (including the care.data controversy and Deep Mind’s analysis of records to develop AI diagnostic capacities) have focused discussion on data collection, analysis, and use.Lydia’s work looks at how minds, systems and technologies come together to perform better at cognitive challenges with particular focus on health and patient organisations. Before joining Nesta Lydia worked as a researcher across technology sectors, with particular focus on medical and biological information. She has an MSc in Digital Anthropology and has researched public understanding of Big Data and data collection practices. This expertise enriched our discussion of the quantified self and emerging practices of the “quantified self,” as well as the “metric power” accumulated by those with access to information. Be sure to follow Lydia on Twitter @lydnicholas for more news and views on data ethics and policy.

The Week in Health Law Podcast from Frank Pasquale and Nicolas Terry is a commuting-length discussion about some of the more thorny issues in Health Law & Policy. Subscribe at iTunes, listen at Stitcher Radio, Tunein and Podbean, or search for The Week in Health Law in your favorite podcast app. Show notes and more are at TWIHL.com. If you have comments, an idea for a show or a topic to discuss you can find us on twitter @nicolasterry @FrankPasquale @WeekInHealthLaw

March 10: Critical Pathways to Improved Care for Serious Illness

Close up of helpful carer hand and happy old man

Friday, March 10, 10:30am – 2:30pm

Harvard Law School, Wasserstein Hall, Milstein East BC, 1585 Massachusetts Ave.

Join leading health care executives, experts, policymakers, and other thought leaders as they embark upon a project to develop a guiding framework for providing improved care for people with serious illness. You are invited to observe the inaugural working session where distinguished panelists will discuss innovations in program design and pathways for delivering high quality care to an aging population with chronic illnesses, especially those with declining function and complex care needs.

Check out the full agenda and list of roundtable participants on the website!

Attendees are welcome to participate in Q&A sessions, and lunch will be provided. Please RSVP for lunch here.

This project is funded by the Gordon & Betty Moore Foundation, and this convening is part of the Project on Advanced Care and Health Policy, a collaboration between the Coalition to Transform Advanced Care (C-TAC) and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School.