April 04, 2016
As we’ve seen, there has been a steadily increasing level of discussion and enthusiasm surrounding precision medicine. The Healthcare Leadership Council (HLC) has remained engaged in this conversation, given the expertise and involvement of its members. HLC hosted a briefing on Capitol Hill last April on the subject, in which Bio-Reference Laboratories, New York-Presbyterian Hospital/Columbia University Medical Center and Mayo Clinic detailed the benefits that have already been realized, and the potential that has yet to be reached. They each shared stories of how targeted therapy transformed the lives of patients in ways that conventional medicine could not. Although the cost of sequencing will continue to benefit and see increased usage from price declines, early genetic testing has allowed for immediate diagnosis and treatment, bypassing the costly trial and error approach. Our member experts all agreed that one organization alone cannot succeed in integrating genome based knowledge into personalized care.
Last year the Precision Medicine Initiative (PMI) was announced by the National Institute of Health (NIH). This year the White House hosted a PMI Summit, in which President Obama both participated and partnered with the NIH in an educational tweet chat that answered questions from the public regarding the initiative. During this chat, NIH Director Francis Collins cited a paradox, “Only by studying populations at scale can you really understand individual differences.” The PMI Cohort Program is currently working towards collecting one million or more participants that reflect the diversity of our country.
Precision medicine is an area that would directly benefit from the ability to collect, store and share data electronically. In order to see real success, harmonization of data privacy laws is a necessary next step. Diverse state privacy regulations regarding patient information accompany HIPAA laws, adding to the complexity of sharing data in a way that would improve the quality of patient care. Federal rules for research subjects intersect with additional privacy policies that are also burdensome to the healthcare system. The ability to utilize any data gathered from partnering facilities is an important function, and dialogue between the federal government and states is needed to ensure this is feasible across the country. This is a field of health policy we have discussed fully in the Healthcare Leadership Council’s recently-released “VIable Options: Six Steps to Transform Healthcare Now” policy recommendations. The U.S. is on the cusp of a new era in healthcare, and the flow of health data is a crucial part of it.
June 30, 2015
There is an excellent read in the Wall Street Journal today from Susan DeVore, the President and CEO of the Premier, Inc. alliance of 3,000 community hospitals throughout the country. (Ms. DeVore is also chairman of the Healthcare Leadership Council.)
In her WSJ piece, Ms. DeVore notes that, while other industries have made excellent use of evolving information technologies to improve customer service and strengthen cost-efficiency, healthcare has lagged behind. Improved data sharing is essential, she writes, “to ensure the right information about the right patient is available at the right time.” She is absolutely correct in her assertion that making this happen is a responsibility shared by the private sector and public officials.
The DeVore column is below:
SUSAN DEVORE: Imagine what Twitter would be like if you were only able to have and Tweet to one follower? Or if email only worked within the four walls of your organization? Technology has made information sharing seamless and almost limitless for most people and industries. But it hasn’t reached its full potential in health care.
In health care, technology is foundational to drive change and improve the quality and value of patient care. The problem is that important health-care data cannot flow freely among the various health-information-technology systems that hospitals and health systems use. This hinders the ability for providers to connect and easily exchange information across their organizations and with other health systems.
As health systems focus on accountable care and increasingly move toward alternative payment models, the need for interoperable data across all health-information technology systems becomes critical. The ability to seamlessly pull discrete data anytime, anywhere helps to ensure the right information about the right patient is available at the right time. But today, providers are challenged with having to double check data pulled from disparate devices to make sure the information matches, such as dosing and blood sugar levels. Not only is this a step back for efficiency, but it is another manual process that has the potential to create errors and patient-safety issues.
To truly leverage health-information technology’s full potential, diverse networks and systems in health care must be able to talk to each other. To do so, we should require the use of innovative technology solutions such as open application programming interfaces (APIs) and secure third-party applications that connect the data to enable the real-time exchange of information.
Designing and implementing health-information technology that promotes collaboration among all stakeholders would create a learning health system that focuses on improving health-care quality, efficiency, safety, affordability and access. Private-public partnerships on interoperability governance, standards, measures and system transparency are essential to make this work.
A few weeks ago I was watching as my grandchildren were playing with their parents’ smartphones. At their ages, they are only interested in the bells and whistles, but in their little hands were devices probably considered impossible 10 or 15 years ago. Through innovation, ingenuity and necessity, my hope is that the challenge of interoperability becomes an obsolete concern.
April 27, 2011
Yesterday, the Supreme Court heard the case of Sorrell v. IMS Health Care which concerns a Vermont law that bans the voluntary exchange of a physician’s prescribing history. (The Healthcare Leadership Council signed an amicus brief in this case, advocating that the Vermont law be invalidated. We joined a number of individuals and organizations, including the Associated Press, the U.S. Chamber of Commerce and two former HHS Secretaries in doing so.) This could have been an opportunity to illuminate the often-confusing issue of patient privacy laws for the public but, unfortunately, some of what I’ve heard has done just the opposite.
Vermont Public Radio did an interview yesterday with the state’s attorney general regarding his defense of the law restricting information exchange. (You can hear the interview here.) He compared the release of a physician’s prescribing history to allowing someone to paw through your tax returns. I’ll admit that if I heard that and didn’t know better, I’d be petitioning the Supreme Court to strengthen the Vermont law instead of striking it down. But, nowhere in the interview did the attorney general mention the fact that the medical information at the heart of the Sorrell case is all de-identified. There is no use of names, addresses or any other data that could be used to identify an individual. So, instead of taking the opportunity to help the public better understand how de-identified health data can be used to improve healthcare quality and advance medical research, we see the use of scare tactics that are not grounded in fact.
On a more positive front, the tenor of the questioning by the Supreme Court Justices yesterday seemed to indicate they are leaning toward striking down the Vermont law which, as we said in our amicus brief, “makes it harder, not easier for healthcare professionals to identify and reduce the substantial variations that exist in the delivery of healthcare services and the considerable health disparities that affect the lives of many Americans.”
April 04, 2011
Last week, my organization, the Healthcare Leadership Council, joined with two distinguished healthcare leaders, Dr. Louis W. Sullivan and Tommy Thompson, both former secretaries of the Department of Health and Human Services, in filing a ‘friend of the court’ brief with the U.S. Supreme Court. We did so because of the critical nature of medical information and the importance of keeping databases accurate, up-to-date and accessible to medical professionals.
The case in question is Sorrell v. IMS Health and it concerns a Vermont law that bans the commercial use of de-identified patient data that is part of a physician’s prescribing history. It’s the kind of law that plays to the kneejerk instinct to keep patient information in a sealed and inaccessible lockbox, but the ramifications of this approach to quality healthcare are quite severe.
What’s important to note here is that the Vermont law really isn’t protecting anybody. The patient data in question is already de-identified. Anyone making use of this information won’t see patient names. Furthermore, there are already rigorous federal and state regulations in effect to protect against wrongful use of medical information.
The downside of the Vermont law is that barring all commercial use of such data also stops the flow of resources that is used to maintain current, accurate databases and to create new analytical tools that enable the use of data for health system improvements.
Secretaries Sullivan and Thompson and the HLC are far from alone in holding this point of view. Over 50 organizations and individuals, including the U.S. Chamber of Commerce and the Associated Press, have also filed amicus briefs to invalidate Vermont’s statute.
March 25, 2010
The op-ed piece by Deborah Peel, who heads the Coalition for Patient Privacy, that appeared in The Wall Street Journal this week received an inordinate amount of attention. That’s because Matt Drudge of the popular Drudge Report website seized upon the Journal’s headline, “Your Medical Records Aren’t Secure” and listed it among several other stories critical of President Obama’s healthcare plan.
But Dr. Peel’s op-ed wasn’t criticizing the President. The targets of her op-ed included hospitals, pharmacies, employers and a litany of others who are out to plunder our personal medical records for financial gain. And, she alleges, these violations of confidentiality are even easier and more likely when health records are maintained electronically instead of on paper. She insists that the answer lies in giving patients the responsibility to decide what information they choose to share with medical professionals and what to keep secret.
Dr. Peel’s logic train goes off the tracks rather quickly. First of all, it’s simply not true that electronic records are less secure than paper ones. In her op-ed, she chooses to not acknowledge the role HIPAA privacy laws have played in keeping health information confidential. She ignores the new laws adopted earlier this year that strongly encourage encryption of electronic data and that impose new criminal and civil penalties for privacy violations. And you would never know from the op-ed in the Journal that hospitals, insurers and physicians throughout the country have taken extraordinary steps to safeguard patient data.
So we can see that any privacy “crisis” is overblown. The greater problem lies in the proposed solutions.
Giving patients the responsibility to decide which portions of their medical records should be open to healthcare professionals is, at best, unreasonable and, at worst, potentially deadly. It is highly unlikely that a patient without a medical background can make a sound decision on what information a physician might need to provide quality treatment.
But an even greater potential harm lies in the society-wide impact of ill-advised patient consent proposals. Enabling system-wide picking and choosing of what data enters the flow of essential information will have an impact on the many beneficial actions that are dependent upon information collection and analysis, such as:
• Reporting and tracking incidences of disease for public health purposes
• Monitoring the quality and safety of medical products
• Carrying out product recalls
• Medical research into lifesaving cures and treatments.
Our health system has dual objectives in this regard. We need to protect patient confidentiality while, at the same time, preserving the vital flow of information that protects, extends and saves lives. Some, as Dr. Peel’s op-ed demonstrates, lose sight of the need to maintain that balance. The fact is, though, that you should never have to choose between privacy and excellent healthcare, and we don’t have to.