Patient rights

News

Sharon Terry

Citizen Science Pioneer Diagnoses Medical Research Shortcomings

June 22, 2017

In a newly-released TEDMED talk, Sharon Terry of Genetic Alliance describes her journey to becoming a citizen scientist after her two children were diagnosed with the genetic condition pseudoxanthoma elasticum (PXE), which causes the symptoms of premature aging. She quickly learned “that there was no systematic effort to understand PXE . . . researchers competed with each other because the ecosystem is designed to reward competition rather than alleviate suffering.” In response, Terry and her husband, Patrick, educated themselves on the disease and gathered thousands of similarly affected people to initiate studies and clinical trials. The message of her talk is that “citizen scientists, activists using do-it-yourself science, and crowdsourcing are all changing the game.” Ms. Terry is a member of the working group for the LawSeq project, which is laying the policy groundwork to translate genomic medicine into clinical application; the principle investigators are Consortium Chair Susan M. Wolf, JD; Ellen Wright Clayton, MD, JD of Vanderbilt University; and Frances Lawrenz, PhD of the University of Minnesota. Last December, the Consortium sponsored an event on patient-led medicine and citizen science; video can be viewed here.

News

Logo for Petrie Flom Center, Harvard Law School

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

News

National Football League logo

The Ethics of Football: NFL Player Health Policies Examined

February 1, 2017

Just in time for next Sunday's Superbowl game, a new paper published in the University of Pennsylvania Law Review explores the legal and ethical aspects of a hypothetical National Football League (NFL) player's health. The authors, who include Consortium collaborator I. Glenn Cohen of Harvard Law School, ask "What are the current legal standards for employers collecting and acting on an individual’s health- and performance-related information?" They draw upon disability law, privacy law and other disciplines to provide recommendations to better protect the health and privacy of professional football players. The authors find that "it appears that some of the existing evaluations of players, both at the NFL Scouting Combine (Combine) and once drafted and playing for a club, seem to violate existing federal employment discrimination laws." To correct this, they recommend both adherence to current laws and changes to existing statutory schemes. Read the entire article here

News

Logo for Dept. of Health and Human Services

Final Version of Common Rule Announced

January 18, 2017

The long-awaited updated version of the Common Rule – the regulations safeguarding individuals who participate in research – was announced today by the US Department of Health and Human Services. The goal of the revision is to strengthen protections of research participants without adding undue administrative burdens for researchers, particularly in low-risk studies. The Common Rule revisions will inform the expert presentations at the Consortium's research ethics events on March 8-9, consisting of a national conference, "The Future of Informed Consent in Research and Translational Medicine" on March 8 and the University of Minnesota's "Annual Research Ethics Day" on March 9. These events will be webcast; for more information and to register, visit the Consortium's events page. The Annual Research Ethics Day on March 9 will conclude with in-person workshops and trainings on practical research topics. To learn more, visit z.umn.edu/researchtr

News

Datahead guy

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

News

Republican and democratic symbols -- donkey and elephant

New Study Shows How Doctors' Politics May Influence Patient Care

October 11, 2016

Recent research looked at how patient care may be affected by a doctor's political leanings, at least regarding some controversial issues like abortion or firearm safety. An article from the Associated Press explains the methodology of the study, in which Yale University researchers surveyed voter registration records of 20,000 primary care physicians to link them to their party affiliation. The study's authors then surveyed 200 of those doctors about how they'd react to health issues that might come up during a routine physical. Bioethicist Nancy Berlinger of the nonpartisan Hastings Center, who wasn't part of the study, said "this was really an eye-opener," noting these results shed light on implicit bias; when it comes to deeply partisan divides, doctors "can't screen that out just like the rest of us can't screen it out."

News

Logo for the Americans with Disabilities Act

Disability and End-of-life Medical Options

July 26, 2016

In an editorial in today's MinnPost, Bobbi Jacobsen, who has lived with amyotrophic lateral sclerosis (ALS) for 20 years, commemorates the passage of the Americans with Disabilities Act 26 years ago today by calling upon "the leaders of major disability organizations. . . to recognize that we want to be empowered in our end-of-life medical options, too." The article was written to raise awareness and support for Minnesota's Compassionate Care Act, which is modeled on an Oregon law that permits aid in dying but not assisted suicide. Jacobsen notes that the former only applies to terminally ill people: "Medical aid in dying applies to people who want more than anything to live, but a deadly disease is ending their lives." The bill was introduced in the Minnesota state legislature during the last session and was heard by the Senate Health Committee. It was withdrawn before a vote was taken, but is expected to be introduced again during the next session, which begins in January, 2017. 

News

Sophia Vinogradov

New Psychiatry Department Head Appointed

April 4, 2016

The University of Minnesota has hired a new leader for its Department of Psychiatry. Dr. Sophia Vinogradov, a schizophrenia researcher who has recently served as vice chair of the psychiatry department at the University of California, San Francisco School of Medicine, will start in August. New leadership for the department is one of several steps being taken to address issues raised in external reviews of the University’s protection of human research participants. Dr. Vinogradov replaces interim department head Dr. Mark Paller, senior associate dean of the Medical School, who has led the department since last August when Dr. Charles Schulz resigned. Learn more in articles from the Star Tribune, Pioneer Press, and Minnesota Daily.

News

Emergency room entrance at Rennes hospital, France

Death and Hospitalization in French Drug Trial Illustrate Challenges of Early Stage Research

January 19, 2016

Last Friday, the New York Times reported an "unprecedented" accident during a Phase I clinical drug trial. One patient died and five others were hospitalized at the Centre Hospitalier Universitaire de Rennes in northwestern France after they were orally administered a pain relief drug candidate. An article published today in Chemical & Engineering News includes reporting on what scientists think may have happened, which is necessarily speculative because of the limited information available. While adverse reactions this serious are rare in drug trials, the incident casts a spotlight on the importance of obtaining informed consent. As Prof. Carl Elliott, MD, PhD, of the University of Minnesota's Center for Bioethics expressed concerns in the New York Times article about how much the men were paid to participate in the trial, saying “many Phase 1 trial volunteers are poor and unemployed, and they volunteer for trials like this because they are desperate for money. This means they are easily exploited.”

News

Teen hurt playing football

Football Concussion Safety Guidance Inadequate, Say Two U Professors

November 11, 2015

A forthcoming editorial in the January, 2016 issue of the American Journal of Bioethics (already posted online) responds to recent football safety recommendations for children and teens from the American Academy of Pediatrics (AAP). Dr. Steven Miles of Consortium member the Center for Bioethics, and Dr. Shailendra Prasad, who specializes in family medicine and community health, co-authored the commentary, which states that the AAP guidelines don't go far enough. They cite increased understanding of the dangers of concussion, especially for young people who are more susceptible than adults to long-term damage from head trauma. Miles and Prasad conclude by calling on "the medical community [to] help students, schools and society leave a sport on which the sun is setting." 

Publication

Research

Logo for Patient-centered Outcomes Research Institute

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.

Symposia

Symposia

News

Sign outside of hospital emergency room

Consortium Grant Supports High Utilizers Study

May 7, 2015

A group of University of Minnesota graduate students in law and health is conducting a study of high-frequency healthcare utilizers with funds obtained through the Consortium's Research Awards program. The grant is "Twin Cities High Utilizers: A Patient-Centered Approach to Address the High Cost of Health Care" and the work is being conducted by UMN Hotspotters, who are utilizing a methodology originally developed by Dr. Jeffrey Brenner, MD (interviewed here on Freakonomics Radio) of the Camden Coalition of Healthcare Providers (CCHP). The ultimate goal of hotspotting is to identify patients for whom socioeconomic factors are causing overuse of emergency rooms, rather than more effective and less expensive healthcare options. An article in today's Minnesota Daily describes the UMN Hotspotters pilot study and their plans to expand upon it. 

News

Horizontal arrow road sign

Susan M. Wolf Interviewed on the Future of End-of-Life Care

April 24, 2015

Professor Susan M. Wolf was interviewed today by Kerri Miller on Minnesota Public Radio's Friday Roundtable regarding a New England Journal of Medicine article she co-authored examining 40 years of end-of-life policy work. Participants in the hour-long program discussed the ongoing practical and emotional challenges faced by families, patients and physicians when coping with the dying process. The program also featured Dr. Glen Varns, a palliative medicine physician at Allina Health, and Dr. Jacob J. Strand, director of the Mayo Clinic's Symptom Management, Pain and Quality of Life Clinic. A blog post on the topic is available here

News