Framingham Study

When I was Governor of Utah I became fascinated by the potential of personalized medicine. Researchers years before had begun developing the Utah Population Database (UPD) which is genealogy records accumulated by the Church of Jesus Christ of Latter Day Saints, combined with medical records, disease registries and other publicly available documents. When combined with genetic information on certain families, the UPD was a powerful tool in finding the genes linked to specific forms of cancer and other diseases.

I wanted to enhance the Utah database by creating capacity to track directly more families. Our strategy was to identify families that had settled in Utah in the mid-19th century and track their descendents. Incidentally, my family fit into that category.

Periodically, I would invite some of the most respected members of those families to the Governor’s residence for dinner with me and a genetic scientist. Our conversation would lead to an invitation for their family to participate in the project. Accepting meant they would organize what I called a “poke and probe” family reunion. Family members would fill out questionnaires about their history and behavior. Each would be physically examined. Each participant committed to repeat the effort in subsequent years.

One night, after sitting quietly through dinner and the conversation, an older man indicated to me that he had something he wanted to say.

“I don’t understand all the science here, but I do believe there is something to this genetics stuff.” He continued, “This week I was diagnosed with macular degeneration and I’m 70 years old. When my father was 70 years old, he had the same symptoms. When my grandfather was 70 years old, he had them too. If there is something my family can do to prevent a grandson or granddaughter from having to go through this—we’re in.”

A couple of years later, I found myself Secretary of Health and Human Services. I attended a meeting launching another project to pioneer future genetics research. At that meeting it was announced that the gene causing macular degeneration had been isolated.

I doubt my friend from Utah had anything directly to do with the discovery. However, his family’s participation in that project will undoubtedly result in future announcements.

This week I was in Framingham, Massachusetts, a community about 45 minutes out of Boston. It’s a quiet little town and one wouldn’t naturally think of it as a capital of medical research. However, if you use the words Framingham Study to most medical researchers it evokes a responsive recognition.

In 1948, the Public Health Service, working with some local physicians and researchers, persuaded the entire community to be part of a long term study on a wide range of health related behavioral studies. They have been at it now nearly 60 years. More than 14,000 people have participated. The benefits to the average American just keep piling up. (Read op-ed article)

Having detailed medical histories on all these people and their families, when combined with new genetic information and electronic medical record technology, will be profoundly important.

I traveled to Framingham to thank the participants in that study and to encourage them to pass the ethic of consistent involvement to their children. It was a reminder to me of how important it is that ordinary people understand the impact they can have on the health and well-being of future generations.

Health IT

I’m returning from Chicago where we had a meeting of the American Health Information Community. This is the Federal Advisory Committee HHS initiated to advise the Secretary on health information technology standards. I won’t report on the meeting. We Web cast it and it’s available on the HHS Web site if you’re interested (http://www.hhs.gov/healthit/community/meetings/m20071113.html). I do want to reflect on a subject the meeting caused me to begin thinking more about.

We had a discussion about electronic prescribing of medicine. The technology necessary to electronically receive and fill prescriptions exists in most pharmacies in the United States. However, only a small percentage of doctors use it. The benefits are unchallengeable. E-prescribing is not only more efficient and convenient for consumers, but widespread use would eliminate thousands of medication errors every year. At the AHIC meeting, we announced standards that will help to get us there. We are starting with standards for providing medication history and for formularies so that providers have the information they need to write correct prescriptions. These two standards alone could go a long way to eliminating errors.

Most doctors haven’t invested in the necessary technology to do e-prescribing. The reasons are complex and range from a perceived lack of financial incentives to a reluctance to give up the familiar prescription pad. It is not expensive. This change needs to happen and, from my standpoint, sooner rather than later.

The last several years we have been nudging the medical family toward this. This fall, we eliminated the capacity for providers who have an e-prescribing tool to fax prescriptions paid for by Medicare to pharmacies. That has motivated some to use electronic systems. However, we need to do more, I think, including using our power as a payer to motivate the change.

When I was Governor of Utah, I spent time with members of the Highway Patrol. I discovered that after a drunk driver was ticketed it took the patrolman nearly three hours to fill out a stack of forms that was a quarter-inch thick. They then made four copies of the stack and mailed them to various parts of the government for processing.

I ordered laptops installed in patrol cars and had an electronic system developed that allowed users to process documentation in a fraction of the time. The system had undeniable benefits of efficiency and safety because patrolmen could spend more time on the road and less time in the office doing paperwork.

There was a problem I hadn’t considered. Many of the officers didn’t keyboard and frankly some of them were resistant to learning. Ultimately, I had to say, “Look, we are at a point where we can’t afford to have people on the highway patrol who can’t type. If you want to work here, you need to develop the skill to fill your reports out efficiently using a computer. We’ll help you learn, but this is now a requirement of your job.” The patrolmen that didn’t have the skills developed them and the system functions well.

E-prescribing needs faster implementation. We have been through all the public processes necessary to develop standards. The technology is readily available and widely distributed. Electronic prescribing will enhance the safety and convenience for patients. Large health care providers, including Medicare and Medicaid, need to move toward making it a mandatory part of medical practice soon.

Import Safety Report

A good share of my week has been spent in activities related to a report for the President on the safety of imports. Every few days it seems another significant recall is announced.  It has become a matter of real focus for consumers and policy makers.

It is my observation that issues like this slowly ripen because of bigger and more fundamental shifts in economic or social practices. Concern over the safety of imports is not unique to the United States.  Last week I hosted the health ministers of the G7 countries plus Mexico and the European Union.  Every country represented is dealing with import safety concerns. 

What are the underlying economic and social changes causing this sudden concern?  Import safety concerns represent the natural maturing process of a global market.  They represent an early warning that we need to adapt our systems and thinking to accommodate a new set of challenges.  The old ways do not protect us adequately from the new risks. 

I was assigned by the President to chair a government-wide review of our practices related to imports of all kinds.  The working group included 10 other cabinet members and the heads of the Food and Drug Administration and Consumer Product Safety Commission. 

I’ve previously reported on some of my experiences doing this review.  Today, I want to provide you access to the report.  I think it has been well crafted.  It contains 50 specific recommendations in 14 categories, all crafted to fill in detail to the Strategic Framework we provided the President eight weeks ago.

In keeping with my goal of making these postings shorter (and the fact that I’m out of time today) I will provide some additional observations later.  In the meantime I would value your reactions.