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Diving into Genomics at Datapalooza

May 03, 2017
2:15 pm

I had the privilege of moderating a panel at Datapalooza – the annual gathering of hundreds of leaders in health data innovation — that focused on innovations in genomic science, which are rapidly spurring discoveries in personalized medicine.  Clinicians face enormous challenges in keeping pace with evolving best practices in data management and implementing these technologies into routine care.  The panelists focused on how genomic sequencing could be utilized with today’s healthcare information technology infrastructure, and the most effective way to do so.

Keith Stewart, the Carlson and Nelson Endowed Director of the Center for Individualized Medicine at the Mayo Clinic, where he is also a professor of medicine at the Mayo College of Medicine, discussed the importance of understanding genomes.  He said that 24 percent of people who have their genes sequenced discover new medical findings.  Utilizing this information can lead to more precise treatment.  Personalized treatment means that patients have the capability of finding out which drugs will give them more or fewer side effects, and which will be more effective overall.  Different people react to drugs in different ways, and this advanced knowledge can significantly increase quality of life for those who would otherwise suffer from severe side effects.  Dr. Stewart questioned how genome sequencing results can be stored in a way that they can be easily referenced for treatment.  Mayo Clinic, he said, is working on a way to bring genomic sequencing directly to the consumer, without the need for a doctor as a middleman.

Emma Huang, associate scientific director for Janssen research and development, said that the entire health continuum — from prevention to interception to cure — can be pushed forward by genomics.  Models are being developed for integrating genomic data into predictive models in real time.  What the system is lacking is the deep data collection at a population level in order to predict with greater accuracy.  There are currently global initiatives linking human genetics and clinical phenotypes.  Ms. Huang specified that data needs depend on the stage of a patient’s health.  She declared that insights from genomic data need to be available and easily interpreted by patients to achieve results.

A major implementation barrier involves data transfer, flow, and interconnectivity.  Genomics data is rarely generated, analyzed, interpreted, and clinically implemented in the same system.  Mark Dunnenberger, PharmD, program director of pharmacogenomics at NorthShore University HealthSystem, said genomic data needs to be integrated into the system for true value and should be used alongside clinical data.  NorthShore opened the first pharmacogenomics clinic of its kind in 2015, and has recently expanded the offering with an at-home testing program, MedClueRX. Electronic health records were not built to handle the huge volume and complexity of genomic data, and the current method of saving patient information as pdf files does not provide discrete data and tends to get lost in the system.  Pharmacogenomics helps clinicians choose between therapeutically equivalent treatments that benefit unique individuals in varying ways.  Patients grasp the value of pharmacogenomics, Dr. Dunnenberger said, and are willing to invest money regardless of whether it is covered by insurance.

As our nation’s efforts to bring precision medicine the forefront of clinical care accelerate, we must take care to ensure we incorporate this data in ways that will be usable for clinicians and valuable for patients – without creating additional uncertainly or unsustainable costs.  As is often the case, HLC members are forging a path forward for others to follow.

Your Decisions Matter. Take Control with Advance Care Planning

April 16, 2014
9:15 am

Every year in April there is a day specifically set aside to discuss advance planning.  National Healthcare Decisions Day – today, April 16 — focuses on educating individuals on the importance of developing power –of-attorney legal documents for healthcare decisions and creating advance directives, or living wills.  Advance directives identify values and preferences that can direct healthcare professionals regarding critical care decisions in the event individuals are unable to speak for themselves. These instructions only go into effect if an individual is no longer able to make their own  decisions.

The Healthcare Leadership Council is a partner in the Coalition to Transform Advanced Care (C-TAC), a nonprofit organization that has conducted consumer research on advance planning and care for serious illness. Their Call to Action supports best practices that ensure coordinated care, empowering people to make informed choices for themselves and educating healthcare professionals to assist their patients with advance planning. They provide resources for care advocates and family caregivers as well as educators and providers.

We urge people to pay attention to the messages of National Healthcare Decisions Day and engage in their own difficult, but essential, conversations about end-of-life wishes.  It’s important for those who are knowledgeable about healthcare and health policy to lead by example and emphasize the importance of thoughtful decisionmaking about possible eventualities.  Changes in health and well-being are unplanned and uncontrollable, so it’s important to take some measure of control with advance care planning.

For more information on National Healthcare Decisions Day, please visit www.nhdd.org.

Senator Harkin Becomes HELP Chairman

September 09, 2009
2:52 pm

harkin-sen-tom-07-01-11sCongratulations to Senator Tom Harkin of Iowa on his ascension to the chairmanship of the Senate Health, Education, Labor and Pensions Committee, taking the place of the late Edward Kennedy.

Senator Harkin is one of the Senate’s strongest and most vocal champions for making prevention and wellness a cornerstone of healthcare policymaking.  We’ve had the opportunity to work with him on various issues, and there is no question regarding his dedication to the idea that we can best improve the U.S. healthcare system by investing in the early detection and prevention of chronic disease.

We certainly look forward to working with the Senator from Iowa in his new role as Senate HELP Chairman.

Welcome to Prognosis

April 24, 2009
8:29 am

According to those in the know on such things, there is a new blog created every half-second.  That means 175,000 new blogs are finding a home on the Internet every single day.  That’s a staggering figure for those of us who struggle to find time to get through the entire newspaper in the morning.

Given this abundance of information on the Web, one needs a pretty compelling rationale to erect another dwelling in this already-crowded community.

Then again, there are few subjects as important as healthcare or, more specifically, better understanding the state of our nation’s healthcare system and its future.

That’s not to say there is a scarcity of interesting and insightful voices bringing provocative perspectives on health issues to the blogosphere.  Anyone who wants to add both breadth and depth to their understanding of today’s key health policy debates should add sites like the National Journal Health Blog or Disruptive Women in Health Care to their must-read list.

The niche we want to create for Prognosis is the nexus at which policy meets practice. The organization I head, the Healthcare Leadership Council, has a membership that includes many of the nation’s premier hospitals, academic health centers, innovative pharmaceutical and medical device companies, health insurers, pharmacies and health care services companies.

We’re going to discuss policy on this blog, but we’re also going to make readers more aware of the innovations taking place in healthcare delivery, financing and technology, and how health policy and healthcare practices affect one another.  As Congress tackles the tough issues of how we pay for and deliver healthcare while expanding access to every American, let’s have a robust discussion as to the real-world impact possible policy decisions may have on patients, physicians, hospitals and medical researchers.

Our blog title, by the way, stems from the Greek word prognostikos.  It means “to have knowledge beforehand.” Not that we’re claiming to predict the future in this space, but we hope that a better understanding of what’s happening today in American healthcare will better enable us to participate in the debate that will shape, hopefully, an exciting tomorrow.