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Patient-led Medicine Symposium on Harvard Bill of Health Blog

March 6, 2017

A symposium published today on Bill of Health, a blog edited by the Petrie-Flom Center at Harvard Law School, expands on discussions held at the Consortium's Deinard Memorial Lecture last December, "How Patients Are Creating Medicine’s Future." The Deinard lecture featured four speakers – Ernesto Ramirez of Fitabase, Jason Bobe of the Mount Sinai School of Medicine, Barbara Evans of the University of Houston Law Center, and Kingshuk K. Sinha of the Carlson School of Management at the University of Minnesota. The Bill of Health symposium provides commentary on their lectures and further reflections on the ways citizen science and wearables are transforming both health care and medical research. A video of the entire Deinard lecture can be viewed here

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Brain Scientists Push Back on "Technology Fetish"

February 28, 2017

A new study described by The Atlantic as "part philosophical treatise and part shot across the bow," argues that neuroscientists have been led astray by new research technologies. The authors point to the need for "a more pluralistic notion of neuroscience when it comes to the brain-behavior relationship: behavioral work provides understanding, whereas neural interventions test causality." Lead author John Krakauer notes, "People think technology + big data + machine learning = science. And it’s not." One example is mirror neurons, "the most hyped concept in neuroscience," in which "interpretation is being mistaken for result." Read the study, published in Neuron, here

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Prof. Kingshuk Sinha

Recall of Medical Devices Needs to be More Timely

February 20, 2017

A new study by Consortium collaborator Kingshuk Sinha illustrates troubling lags in the recall of flawed medical devices. In the paper, Prof. Sinha, a professor in the University of Minnesota's Carlson School, "applied digital analytics to millions of medical device product reports and recall records" to reveal what Sinha calls "under-reaction bias," according to the Minneapolis Star Tribune. The article details efforts by the Food and Drug Administration to use data-mining to improve surveillance of health technology. However, despite robust evidence that problem devices can have significant negative health effects, such adverse-event reports aren't consistently sought or entered into the federal tracking system, known as MAUDE. Prof. Sinha was one of the presenters in the recent Deinard Memorial Lecture on Law & Medicine, How Patients Are Creating Medicine’s Future, during which he shared Big Data and supply chain perspectives on health improvement; a video of that event can be viewed here

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Experts Explore the Opportunities and Perils of Patient-Led Medicine

December 7, 2016

Yesterday's Deinard Memorial Lecture on Law & Medicine was a fitting conclusion to a visionary series. Hundreds of attendees heard from a multidisciplinary panel on the fast-moving, emerging field of patient-led medicine. Prof. Jason Bobe (Mount Sinai School of Medicine) kicked things off by examining the obstacles to broad patient engagement in research, and shared his efforts to empower potential research participants through the Personal Genome Project and Open Humans. Ernesto Ramirez of Fitabase discussed the move toward gathering, analyzing and sharing personal data, and how that has both sparked patient-driven collaborations and led to the development of devices such as the "artificial pancreas," for those with Type 1 Diabetes. Prof. Kingshuk K. Sinha (Carlson School of Management, University of Minnesota) broadened the conversation to include business perspectives, such as supply-chain management, that can be used to increase access to new health-care products, and also highlighted some potential pitfalls of self-treatment, such as patients using unproven or dangerous approaches. Prof. Barbara Evans (University of Houston Law Center) wrapped up with remarks about the ways laws and regulations meant to protect patients have, in some cases, served as an obstacle to participation in research. An article about the event from the Minneapolis Star Tribune can be read here

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What Are the Diagnostic Limits of New Technology?

November 18, 2016

"Would you trust an algorithm to help you with a medical diagnosis?" This question is posed by Christina Farr of Fast Company in her discussion of a collaboration between University of California, San Francisco (UCSF) and General Electric with the goal of finding out what Big Data approaches to diagnosis can – and can't – accomplish. The two organizations will be partnering for the next three years to "develop a set of algorithms to help radiologists distinguish between a normal result and one that requires further attention." Knowing the medical community will be skeptical about such machine-learning approaches, not to mention the lack of appropriate regulation for a diagnosis by a non-human, Michael Blum of UCSF notes, "There is a lot of concern from the public and from clinicians that we’ll be developing things to replace doctors. These developments will be focused on supporting clinicians and in developing safer workflows." Read the entire article here

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Pamala Jacobson, Professor of Pharmacy

Pamala Jacobson Named Distinguished Pharmacy Professor

October 17, 2016

Consortium collaborator Pamala Jacobson, PharmD, FCCP, has been named a Distinguished Professor under the Pharmacy Scholars program. Prof. Jacobson's appointment grants her the "Distinguished Professor" title and $10,000 a year salary augmentation for a five-year period. The principal criteria for the award are the duration and significance of the person's contributions to the development of his/her discipline, and the impact of the person's scholarly endeavors on a national and international level. Prof. Jacobson is a renowned clinician, scientist, and national leader in clinical pharmacology. In her pharmacogenomics research program, she studies how to effectively use genetic and other biomarkers to improve drug efficacy and reduce toxicity. She has been a leader in the emerging field of precision medicine, serving as director of the University's Institute of Personalized Medicine and as one of four Principal Investigators of the Minnesota Precision Medicine Collaborative (MPMC), along with Consortium Chair Susan M. Wolf, JD; Ellen Demerath, PhD; and Kingshuk Sinha, PhD. You can view video of her commentary on Rex Chisholm's 2015 lecture, "Integrating Electronic Health Records and Genomics for Discovery and Implementation: The eMERGE Experience," which was sponsored by the Consortium, here

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Consortium Chair, 3 Colleagues Awarded Grand Challenges Research Grant

September 29, 2016

Consortium Chair Susan Wolf and three Co-Investigators – Profs. Pamala JacobsonKingshuk Sinha, and Ellen Demerath – on behalf of the Working Group on Advancing Health Through Tailored Solutions, have been awarded a Grand Challenges grant from the Office of the Provost to establish the Minnesota Precision Medicine Collaborative (MPMC). This 2-year, $500,000 grant will fund creation of a transformative University-wide initiative to use 21st century technologies – including genomics, informatics, bioengineering, analysis of environmental exposures, and behavioral sciences – to tailor health care to the challenges facing individuals and their communities. This precision medicine approach will fundamentally alter our understanding of health, disease prevention, and treatment. Core to this project is partnering with citizens, patients, and healthcare providers to understand and effectively address major health problems. MPMC will create a living laboratory, starting with demonstration projects on Alzheimer’s disease, lung cancer, and depression. All three are diseases whose incidence, burden, and mortality rates reveal disturbing health disparities. This focus will enable us to leverage U of M research strengths across many disciplines and to engage with partners in the health industry and Minnesota’s underserved communities. By investing in the development and delivery of precision medicine, our university will contribute to the national effort to transform science, medicine, and public health through more precise understanding of the factors contributing to health and disease. MPMC aims to make a unique contribution through collaborative research, cutting-edge innovation, responsible policy, and sustained commitment to improving health equitably across our communities.    

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Cancer Moonshot Announces Next Steps for Transformative Research

September 8, 2016

In his 2016 State of the Union address, President Barack Obama announced the Cancer Moonshot, an intensive research collaborative to accelerate immunotherapy as an effective treatment for cancer patients. Led by Vice President Joe Biden, doctors, patients, researchers, pharmaceutical companies, insurance companies, and technologists are striving to managing cancer as a chronic condition, like diabetes, rather than a devastating and life-threatening illness. Last June, Consortium member center Masonic Cancer Center hosted a local event that was part of the national launch of the Moonshot, which featured remarks by VP Biden and US Senators Amy Klobuchar and Al Franken. Yesterday, a Blue Ribbon Panel released its roadmap for the effort, recommending 10 transformative research approaches for achieving major strides in cancer prevention, diagnosis and treatment by 2020. The report can be read here.

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Personalized Prescriptions Hampered by Insurance Gaps, Doctor Confusion

May 24, 2016

Despite the promise of pharmacogenomics – selecting drugs based on a patient's genetic makeup – significant obstacles to its wide implementation remain. According to an article in Scientific American, "fewer than 10 hospitals around the country. . . are offering pharmacogenomic tests," citing two primary impediments to wider use: inadequate insurance reimbursement and the fact that "doctors are not accustomed to making medication choices using genetics." This matters because each year, "half of all medical patients get a drug that could interact with their genes and cause serious side effects." To build understanding and acceptance of the practice, a research group led by Mary Relling, PharmD, of St. Jude Research Hospital in Memphis, has received funding from the National Institutes of Health to document any new drug-gene relations solidified with new research. Pharmacogenomics is the topic of this year's University of Minnesota Precision Medicine Conference on June 20, featuring nationally-known experts in the field; learn more and register here.  

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President Obama Discusses Who Owns Genetic Data

February 26, 2016

At a Precision Medicine Initiative Summit held at the White House yesterday, President Barack Obama reflected on progress made since he announced the effort in January, 2015, and proposed a series of measures to accelerate related medical advances. In his remarks, the President raised the question of who will own the data in the planned open repository of genomes from 1 million Americans, referring to a tension inherent in the project: "It requires, first of all, us understanding who owns the data," Obama said. "And I would like to think that if somebody does a test on me or my genes, that that's mine. But that's not always how we define these issues, right? So there’s some legal issues involved." Read Slate's article on the topic.

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New Paper from eMERGE Network Challenges ACMG Return of Results Recommendations

January 11, 2016

Last week's Journal of the American Medical Association (JAMA) includes a paper from the Electronic Medical Records and Genomics (eMERGE) Network that presents important new information on the interpretation of gene variants. Using a Big Data approach to electronic health records, eMERGE found evidence that having a potentially harmful genetic variant for two life-threatening disorders does not always translate into developing the actual diseases. An article in STAT explores the significance of the eMERGE findings, featuring short essays by three renowned scholars: Ellen Wright Clayton of Vanderbilt University, Michael Murray of Geisinger Health System and Consortium chair Susan M. Wolf. In her piece, Wolf discusses the JAMA paper in the context of recommendations on return of results regarding incidental findings by the American College of Medical Genetics (ACMG); she previously published an article on her concerns with those recommendations in the Annual Review of Human Genetics. On a related note, the Consortium hosted Prof. Rex Chisholm, PhD, of the eMERGE Network last spring; you can view his lecture here

Publication

Jarvik GP , Amendola LM , Berg JS , Brothers K , Clayton EW , Chung W , Evans BJ , Evans JP , Fullerton SM , Gallego CJ , Garrison NA , Gray SW , Holm IA , Kullo IJ , Lehmann LS , McCarty C , Prows CA , Rehm HL , Sharp RR , Salama J , Sanderson S , Van Driest SL , Williams M , Wolf SM , Wolf WA , eMERGE Act-ROR Committee and CERC Committee , CSER Act-ROR Working Group , Burke W . Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between. American Journal of Human Genetics 2014;94(6):818-826. Download PDF (122.5 KB)

Research

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Patient-Centered Network of Learning Health Systems (LHSNet) – Phase II

This grant provides funds for the Patient-Centered Network of Learning Health Systems (LHSNet) to participate in PCORnet, a unique collaborative designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships that leverage the power of large volumes of health data maintained by the partner networks. LHSNet includes partners across six states and nine academic medical centers, healthcare systems, public health departments and private health plans touching approximately 10 million individual lives, including patients in underserved and rural areas.

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Susan Wolf in Nature on Precision Medicine Data-sharing Challenges

September 3, 2015

An article in Nature outlines some of the dilemmas facing the NIH-funded Precision Medicine Initiative when it comes to deciding how much genetic data about disease risk will be shared with an expected one million participants in the project. While medical treatments tailored to individual genomes promise to be powerful health care tools, the floods of data unleashed by such an enterprise raise vexing questions about unexpected findings and patients' ability to interpret that information. Despite those qualms, as Consortium chair Susan M. Wolf notes, “We’re past the era when scientists can simply take specimens, generate data with great health importance, and decline to offer any of that data back to people.”

Consortium Faculty

Consortium Faculty