HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

DAVID ROSS: Okay, we’re kind of free-lancing. I’m not Debra Linser. I’m Dave Ross. What I’d like to do is take a few minutes this afternoon, just a few and make an argument for why your partnerships need to broaden and specifically to broaden in a way to think about more integrated information about kids.

A fellow that some of you may know, Dr. Bill Feggy, pretty well known guy in public health, a friend and a mentor and a colleague of mine. Bill tells a story about being at an elementary school where his wife is teaching and he was speaking about public health to this fourth grade class. One of the kids at the end of his talk said, “Dr. Feggy, do doctor’s have bosses?” Bill said in a very wise way that only Bill Feggy is good at said “you know, the answer is yes”. “You’re the doctor’s boss”. Then Bill went on to say, “well you might want to know whether or not health officers have bosses” and he said, “yes, you’re their boss”. He made the point that we in public health work for everybody and we should be working for the health of every kid and I think he made a couple of other points that are really relevant today. They are also that consumers are really beginning to exert a force in health care and in the health system to which public health is a part.

Another colleague of mine Dr. Don Berwick who is a CEO of the Institute for Health Care Improvement has played an influential role in transforming the health system through a focus on quality improvement. If you take the notion that consumers are advocating more for their health and becoming more directly involved, particularly involved through the use of information. Couple that with the changes that are starting to happen in the health system to improve quality of care. What you see is pressure on the public health system to step up and be a part, a full part and partner in the overall transformation of the health system and in part through quality information. So what I would like to focus a bit on is where we are going. I would like to ask you; can you think of information as medicine? Can you think of information as therapy? Basically the transformation I think we are seeing within the health system at large is the use of information to prevent injury, to promote health. If you think about newborn screening, that is a lot about the management of information in getting it right.

Let me just talk one moment about a vision for inner operability. That’s the big word that is tossed around a lot now about making sure that data about each of us, person specific or the healthcare IT world will care it personsentric health information. But person data, our personal health data being able to be available for the provider at the time that it’s needed. Basically it’s a one stop shopping experience with information. Just like your banking information makes it possible for you to use your ATM card almost anywhere in the world to get cash because it knows you and knows your account. A similar vision is percolating within the health system to help bring about a transformation of how we manage our personal health data. This slide shows an actual electronic medical record and it speaks to the benefits of integrating information. Benefits that accrue both to the clinician and more importantly to the patient. These systems help us track the quality of care in a much more specific outcomes driven way. They help monitor adherence for routine screenings and they help in reporting and tracking of test results. All of this is happening today and it’s changing fairly rapidly.

This overall effort is somewhat now coordinated and I say somewhat because I say lets not overstate what is actually taking place within the large complicated health system. Dr. David Breller as many of you know pointed as the overall health care IT’s are for the country said that without inner operability and health information exchange; that is moving the data between providers as needed, health information will remain in proprietary silos and he went on to say that inner operability and health information exchange are best understood as business concepts rather than technical concepts. I think that is really important. Basically inner operability is sort of techno speak jargon for making your data available to providers as needed in a secure way. What I’m really here to talk about is a concept of a child health profile. The Genetic Services Branch at the Marlin Child Health Bureau has been promoting this concept now for seven or eight years. Through their grants working with you Maternal Child Health programs to lead towards a more integrated view of information that tells us more about the whole child.

Now, you’ve seen a couple of these faces. You just saw Jana Monaco receive an award. The reason I have her picture and her family’s picture here and I want to acknowledge that Jana is here with us. I owe a debt of gratitude to Jana and I want to tell you a story. About ten months ago I was asked to speak at The Secretary’s Advisory Committee on Heritable Disorders and I was trying to address the general topic of what’s going on with health information in this transformation in the use of personal data for improving medical care processes and eventually impacting and improving individual health. But I felt that it was necessary to talk to my public health colleagues in a rather cautious way. Sort of like, let’s, we can do better; we know that we can make some improvements, you’ve done a great job.

Well during the public session Jana stood up and took me to task in public and for this I owe her a real debt of gratitude. In fact, I was stunned, I mean here’s this woman, walks up to the microphone and says the first thing out of her mouth was “I want to take issue with the words Dr. Ross said yesterday”. I said, “Whoa, what did I say wrong” and then she explained. She explained that good isn’t good enough. That working towards something is essential but we must put the goal that getting it perfect is in fact what we’re after. Not just sort of working after the problem. That we have an opportunity to assure that when kids can be screened for a preventable, treatable disorder that they should get screened. That that should be done perfectly. No sort of well, but perfectly well and that information should be managed perfectly because the consequence of anything less than that is terrible.

The introduction that Dr. van Dyck gave of Jana explained her son Steven’s condition and how that came about. It’s a tragic circumstance but it puts a face on a very important issue and that is that we have an obligation to manage the information correctly and timely in a way that it has an actual impact on individual health. For Jana taking me to task, I’ve told her personally that I owe her a great debt of gratitude because it really renewed my passion and the passion of our group to try to work with you in a more effective way to help you integrate your information system such that you actually deliver on that promise of improving the health of every child.

Dr. Pat Nolan put it this way. She said, “information is a product, not a possession”, and Garla Lant another one of my hero’s said “the bigger risk to public health is data not being used”. I ask you to think about something. Information is an asset that grows in value with use. Just the opposite of the mental paradigm many of us carry from an industrial age where the use of heavy equipment in a factory must be controlled because the more you use it the quicker it wears out. So you should be very careful about how and when and under what conditions you use it.

Okay, information is just the opposite. It’s value increases with use and your job is to increase its use in the right ways to make it effective for the health of kids. We are growing health information exchanges round the country that link all these partners together. Increasingly I think you will become partners in that to provide better coordination of care, better follow-up and therefore better outcomes. I think with that I need to get off the stage and turn it over to my colleagues. We’ll take questions later.