[This Transcript is Unedited]
Canterbury Hotel
750 Sutter Street
San Francisco,
California
CHRISTINA BETHELL, PhD, MPH, MBA, The Foundation for Accountability, Portland, Oregon
E. RICHARD BROWN, PhD, Director, UCLA Center for Health Policy Research, Professor, UCLA School of Public Health, Los Angeles, California
MARY M. CAIN, MPH, Director, Health Care Horizons, Institute for the Future, San Francisco, California
JAMES ALLEN CROUCH, MPH, Executive Director California Rural Indian Health Board, Sacramento, California
JONATHAN E. FIELDING, MD, MPH, Director of Public Health and Health Officer, Los Angeles County Department of Health Services, Los Angeles, California
REED M. GARDNER, PhD, Professor/Chair, University of Utah, Department of Medical Informatics, Salt Lake City, Utah
PETER I. JUHN, MD, MPH, President and CEO, Care Touch, Inc., Concord, California
STEVEN LANE, MD, MPH, Medical Director of Health Information Management, Palo Alto Medical Foundation, Palo Alto, CA
PHILIP R. LEE, MD, Consultant Professor in Human Biology Program, Stanford University, Stanford, California
KATHY MC CAFFREY, BS, MA, RHIA, Vice President Health Care Data and Operations, California Association of Health Plans, Sacramento, California
BLACKFORD MIDDLETON, MD, MPH, MSC, FACP, Chief Medical Officer, Medscape, Inc., Hillsboro, Oregon
RITA MOYA, MS, President and CEO, National Health Foundation, Los Angeles, California
LINDA NEUHAUSER, DrPH, Faculty School of Public Health, University of California Berkeley, Berkeley, California
MICHAEL L. RODRIAN, Chief, Center for Health Statistics, State Registrar for Vital Statistics, California State Department of Health Services, Sacramento, California
DAVID SOLET, PhD, Assistant Chief, Epidemiology, Planning and Evaluation Unit, Public Health, Seattle and King County, Seattle, Washington
DR. LUMPKIN: Good morning. If we can get started now, my name is John Lumpkin. I am chair of the National Committee for Vital and Health Statistics, and pertinently, chairing the work group on the National Health Information Infrastructure.
I have to start out with an apology. When I took the flight from Chicago yesterday, I left some important things behind.
It would seem like one of those kinds of trips where you forget everything. I left my phone in the van coming from the airport. I left my upgrade certificates when I was going to the airport.
I had a document to read on the airplane. I left that at home. I also seem to have left my voice somewhere. It has just been one of those kinds of trips.
I hope if you will bear with me, we are going to make a few little changes because of that, in how we are going to go through the meeting.
The first thing that we have to do is go around the room and do introductions.
Just so that everyone knows, because we are going out live and simultaneously over the internet, it is important for people, when they talk, to identify themselves, so people can know who is talking. That is part of the introduction.
We will start to my right. Jeff?
MR. BLAIR: I am Jeff Blair, vice president of the Medical Records Institute, vice chair of the subcommittee on standards and security and a member of the committee, and I am very happy to be here.
DR. COHEN: I am Dr. Simon Cohen. I am the national director for health information policy for Kaiser Permanente, and a member of the committee.
DR. DEERING: I am Mary Jo Deering from the Office of Disease Prevention and Health Promotion in HHS in Washington. I am the lead staff for the NHII work group.
DR. STEINDEL: I am Steve Steindel from the Center for Disease Control and Prevention, and staff to the NHII work group.
DR. HENDERSHOT: I am Jerry Hendershot from the National Center for Health Statistics, and staff to the health statistics vision for the 21st Century.
DR. WEINZIMER: I am Rob Weinzimer, chief of the data dissemination branch at National Center for Health Statistics, and part of the team helping to plan these hearings.
DR. LANE: I am Stephen Lane. I am with Palo Alto Medical Foundation as a medical director of health information management.
MS. CAIN: My name is Mary Cain. I am a director of health care for Health Care Horizons at Institutes for the Future.
DR. NEUHAUSER: I am Linda Neuhauser. I am on the faculty of the school of public health at UC Berkeley. I am also executive director of the Center for Community Wellness.
MR. RODRIAN: I am Mike Rodrian from the California Department of Health Services and the Center for Health Statistics.
DR. STARFIELD: I am Barbara Starfield from the Johns Hopkins University, a member of the committee.
DR. MIDDLETON: I am Blackford Middleton. I am the chief medical officer at Medscape
DR. JUHN: I am Peter Juhn, CEO of Care Touch, Incorporated.
DR. GARDNER: I am Reed Gardner from the University of Utah and LDS Hospital in Salt Lake City.
DR. ZUBELDIA: Kepa Zubeldia, member of the committee and with Clarity, a new venture I am starting. Two weeks ago I was with Envoy Corporation.
DR. FRIEDMAN: I am Dan Friedman. I am with the Massachusetts Department of Public Health. I am a member of the committee, and I chair the work group on the 21st Century Health Statistics Vision.
DR. SONDIK: I am Ed Sondik. I am director of the National Center for Health Statistics.
DR. LUMPKIN: At this time, we are going to ask the people sitting around to introduce themselves.
MS. JACKSON: I am Debbie Jackson with the National Center for Health Statistics. I staff the National Committee on Vital and Health Statistics.
MR. JOPE: My name is Brad Jope. I am from the Office of Inspector General, here to observe.
MS. BRIGHTMAN: Lisa Brightman from the National Center for Health Statistics. I have been part of the staff of the vision for the 21st century statistics project.
DR. SOLET: I am David Solet. I am from Public Health Seattle and King County.
DR. LUMPKIN: Which office of the Inspector General?
MR. JOPE: Health and human services.
DR. LUMPKIN: We just wanted to know which one of us should feel paranoid.
DR. LEE: Phil Lee, professor of human biology at Stanford and also an emeritus professor at the School of Medicine UCSF, and a senior advisor at the Institute for Health Policy Studies, UCSF.
MR. LEE: Paul Lee, I am a private consultant in internet health care technologies.
MS. MOYA: I am Rita Moya, president and CEO of the National Health Foundation.
DR. LUMPKIN: Thank you all and welcome. What we are going to be doing here today, and then I am going to toss it to Dan, who has agreed to pinch hit a little bit for the introduction of the NHII, we have a hearing of two work groups of the National Committee for Vital and Health Statistics, the work group on national health information infrastructure and the work group on health statistics for the 21st Century.
These two work groups represent a major endeavor by the national committee, as we are trying to set a vision for the nation as we begin to approach our health information policy.
At a recent meeting, some of our long range and strategic planning were confirmed at the last meeting of the national committee.
We realized that it was very important for us as a committee to balance and integrate the two major tasks that we have.
One task is directed by Congress, which is getting to the very specifics of setting standards for health information policy.
Most notably, the recent adoption in August of the first set of the HIPAA rules, dealing with transactions.
The other mission, which the committee has had for a much longer period of time, is to really pay attention to the population based information challenges that we face in this nation, as we try to better drive ourselves toward health in a broad sense.
What these committees are working is a way to integrate those two visions, of population-based prevention and population-based data collection to meet our goals, as well as the standards based approach.
So, the work of these two work groups will be closely integrated in future works and activities of the overall committee. Dan, if you would, thank you for pitching in. My voice is just about gone.
DR. FRIEDMAN: John has a wonderful presentation that any of you who haven't seen it, or for those of you who haven't seen it, I hope you get a chance to see it, a wonderful presentation on the national health information infrastructure.
It actually always makes me a little bit nervous to see it. It prominently features, first, the panel of a 747 and then the panel of the 747 with all the switches blanked off.
Whenever I see it, I start worrying about what my flight home is going to be like. At least I am spared that.
The national health information infrastructure is the National Committee on Vital and Health Statistics' attempt to try to define what a possible future for health information in the United States could consist of.
We are purposely starting out with as broad an integrative notion of health as we can, a notion of health not as disease and not as the absence of disease.
We are starting out with that, knowing that our current health information systems don't do a very good job of portraying health.
We envision the national health information infrastructure, not as a centralized data base, and not as a set of data bases but rather, as is defined in the interim report, as a set of technology, standards, application systems, values and laws, that support all facets of individual health, health care and public health.
The broad goal of the NHII is defined in the interim report. It is to deliver information to consumers, when and where they need it, so they can use this information to make informed decisions about health care.
The NHII as we conceive it consists of three interrelated domains, a personal health care domain, a provider domain and a community health domain.
What we are -- this is the second of four regional hearings that we are undertaking. What we are particularly interested in is trying to obtain input on how we overcome the barriers from where we are now to moving toward the national health information infrastructure.
In our view, those barriers are not technological, but rather, revolve around a set of other non-technology -- some of them are more technology related issues, but many of the issues are not technology related.
What we are particularly interested today is getting your input on how we move from here to there, how we get input on how we overcome barriers.
DR. LUMPKIN: Thank you. I think to sort of expand on that a little bit, imagine that you were in our place.
You have written a report which, at the first hearing we heard everyone comment on, gee, that is a great vision.
Imagine that you were in the position of giving advice to the Secretary of HHS to make that vision happen. That is the kind of recommendations we would like to hear.
We have our first panel. I will ask them to introduce themselves. We will start with Peter.
DR. JUHN: Yes, I am Peter Juhn. I am CEO of Care Touch, Incorporated, which is a new start-up company incubated, in part, by Kaiser Foundation Health Plan.
Our focus is really how to provide information and decision resources to consumers to help them better interact with the health care system, and especially those elements of the needs of their care that are not covered by traditional health insurance.
DR. GARDNER: I am Reed Gardner. I am professor of medical informatics and department chair of informatics at the University of Utah, where we have approximately 60 graduates.
Now, about half of them are physicians getting master's and PhD degrees in informatics.
I also serve as a co-director of medical informatics, medical computing at LDS hospital, where I spent the last 30 years working at gathering data from clinical information systems.
DR. MIDDLETON: Again, good morning. I am Blackford Middleton. I am the chief medical officer at Medscape, and I am associate professor of medical informatics and outcomes research at the Oregon Health Sciences University.
I am a practicing physician using a component of the national health care information infrastructure called the electronic medical record, and I am sometimes a patient of physicians using the same technology.
DR. LUMPKIN: We are going to start with Peter's presentation. Then, after the three panelists present, we are going to ask you to field some questions from the committee. Thank you.
DR. JUHN: Let me just begin by thanking the committee for having me here today. My perspective is probably a little bit different than maybe the perspectives around the room, partly because I am trying to get an internet e health company started today, given where the market is.
So, I am either very foolish or I actually think I see something that others don't.
Let me just begin with some impressions that I have of the report. Then I will get very quickly into I think the two charges that we had.
One was to identify some of the barriers and then to offer some recommendations to the committee.
The impressions of the report, number one, it is a very impressive breadth of coverage. I think you have really gone from kind of the alpha to the omega of all the different items that really need to be included in a health care information infrastructure.
The second is that it identifies many, if not all, the relevant issues that are really critical to making this vision a success.
The third is, it clearly is organized around three very important key stakeholders. The first -- and I do like the order you put these in -- is the consumer/patient, the second is the provider, and then the third is the community at large.
The fourth impression that I have is that it recognizes, I think, in the report, I think three essential facts of today.
Number one is that the internet is here to stay, that this is not a phenomenon of five, six years ago, when we were kind of discussing whether the internet was real or not real, to really saying that the internet is, in fact, a fact of life today.
That leads to the second fact, which is that the internet will have profound impacts on health care, so profound that it may even revolutionize the way we think about health care delivery.
Then the third fact that you acknowledge is the fact that the health care delivery system is not optimally functional at this point. That is actually kind of the nicest way I can put it.
I think the report does, I think, a very nice job of recognizing those three facts.
I think on the more kind of problematic side, I think the report presents a vision, but it doesn't really present a game plan.
I think what the last eight months of my life, especially being an entrepreneur, has told me is that it is fine to dream, but dreams are very hard to eat.
You really need to have some game plan in terms of how you get from where you are today to getting to the destination.
The way I look at this report, I look at it as a postcard of the destination that we want to get to. What is not clear is, in fact, how we get to that destination.
Also, I guess the other kind of more problematic element in the report is that, even though you do include the key stakeholder groups, I think there are several important groups that are not mentioned or are not really described in any great detail.
These groups include insurance companies and managed care organizations. They include the managed health care industry, i.e., pharma and other medical device manufacturers, as well as other, let's say, communication technology-based companies.
Then, one very critical group that is not really mentioned here is the employer group. I think the employers, in many ways, even though they are out of the public spotlight when it comes to health care policy making, I think behind the scenes exert a considerable influence in what actually gets done and what doesn't get done in health care.
Nonetheless, I think this is a very impressive beginning. Let me just offer several of my own perspectives of the health care system today.
I think it is a system that really is living a paradox right now. On the one hand, there are many elements that have really put it into disarray.
The first of these is just rising costs, second is rising dissatisfaction among many of the stakeholders that you mentioned in the group, namely patients and providers as well as employers.
There is a growing distrust of institutions, including the medical profession, as well as kind of the traditional hospital institutions.
There is also a very significant impact of very strong interest groups that have prevented comprehensive reform in the past, and I think may, in fact, stand in the way for not only comprehensive reform, but also the establishment of a true national health care information infrastructure.
This is a paradox. Against this array, we in the states have the greatest arsenal of weapons ever in history to combat disease, disability and illness.
There is also global leadership in the biotech industry, the genomics industry, and just health, if you will, of our medical research enterprise.
There is an increasing array of choices and information kind of sources, if you will, for patients today.
My personal belief in health care is that we need to press the reset button. I think many of you have had some encounters, if you will, with your electronic gadgets of one sort or another where you have to actually resort to pressing the reset button.
I think the reset button here in health care is, we need to go back, if you will, to the first principles of the health care system.
Namely, the core transaction in health care is really the patient with a need, and how we build structures and institutions around solving or providing solutions to that need.
Let me move on to I think the first question that we were posed, which was the financial and operational barriers to implementing NHII.
Let me just object to just that phrase itself. I really object to the term barriers. I think we need to think of these as challenges. That may also be because, as an entrepreneur, we never have barriers, we only have challenges.
I would actually suggest to the committee that you actually remove the word barriers and really think of it more as a challenge.
In thinking about these challenges, there are four key questions that occur to me. The first is, who is going to lead the development of this road map to this vision.
I think leadership is very important here. Leadership is not just a question of convening meetings and getting ideas and creating, if you will, the rhetorical flow.
Leadership really is demonstrating some courage in terms of identifying an end point and asking the question, how best do we get to that end point, even if there will be some winners and some losers, and really having, if you will, the persistence to get through really the very turbulent waters, especially political waters, that it would take to get to the destination.
The second key question is, who is going to participate. So, even of the three stakeholders that you mention in the report -- and several of the stakeholders that I mentioned were not in the report -- how is it that the committee will actually get the input from these stakeholders.
One physician's input is one physician's input and they really don't speak, if you will, for the larger profession.
In a similar fashion, one consumer's input is one consumer's input. I guess one of the other key questions is who is going to participate and how will you identify that participation.
A third key question is, who is going to pay. This is not a trivial exercise. In fact, I think there have been several studies that have been published that, to really get to a vision that we are kind of imagining, that we are talking anywhere from $200 to $500 per person as an investment that will be needed to actually build out all of the portions of this infrastructure.
So, the question really becomes, who is going to pay. Is it going to be the government, is it going to be the consumer, is it going to be the insurance companies.
Is it going to be those people who today are benefitting from the current health care system, i.e., the pharmaceutical companies and medical device companies that are enjoying 30 to 40 percent margins.
I think that is a very critical question, who is going to pay. For that payment, what will they get. Will what they get actually lead to the benefits that we are envisioning.
Then the fourth key question is, who is going to execute. Who is going to do all the things that are necessary to be done.
I know at the beginning here we had commentary about some of the analogies to the airplane industry. I think where we are right now, we have just made a visit to the travel agent, and the travel agent has shown us some nice postcards of where we want to get to.
For us to physically get from where we are today to this destination on the postcard requires an incredible amount of execution.
If you think about that 747, hopefully with the instrument panel in place, you can just imagine all the different execution steps that it will take to get us to the destination.
I think for me, those are the four key questions that I think pose very significant challenges to the committee, but also to Americans at large.
Let me mention a couple other challenges as we see them. One, what is the specific incentive to all the various stakeholders.
What this translates to is, what is the business case here. Meaning, if there is going to be a value proposition, if there is going to be give me a dollar now so there is a benefit later, what does that equation actually look like.
Then the other, I think, key barrier that I see facing both this committee, but just kind of the medical system at large or health care system at large in America is, what are the incentives.
What is going to motivate the various stakeholders to behave in the fashion that is outlined in the report.
Those are, at least from my perch, some of the things that I see as barriers -- sorry, challenges -- to getting this accomplished.
So, recommendations, the first recommendation is, building off those four key questions, describing a business case to each of the stakeholders and really asking the question, why is this national information infrastructure in health care vital to the success of you as a stakeholder.
The second is, spending some time taking a very deliberate, yet speedy approach, to delineating a path, a road map to the destination.
As I see this, the analogy that I like to think about, imagine that you are in the forest and there is a stream ahead of you.
On the other side, on the other bank of the stream is this nirvana that I think we all agree to. The question is how do you get there.
I think there are, at least in my thinking, at least three ways to get there. One is that you walk backwards from the side of the bank that you are on and you try to leap over the stream, much like Carl Lewis might do, or some of the more enterprising e health entrepreneurs of a couple of years ago.
The second is that you might start wading into the stream, hoping that you can wade across the stream. In fact, this is the approach that many current health care institutions have taken.
What they have discovered is that the stream is deep, the waters are moving pretty quickly and it is actually pretty cold in there, and many of them turn around and head back to the original side of the bank.
The third approach is looking up and down on that stream to see where there are boulders and rocks that form a natural bridge across that stream.
What that takes is some deliberate action identifying what those boulders are and taking very careful, deliberate, and yet still speedy steps across those boulders to the other side.
The other recommendation that I have for this committee especially is to take a leadership position. You have already set the vision, but you need to also set some expectations of the various stakeholders that are going to be involved and the various participants.
I think the most important thing here is to move forward. I think these hearings are good. I think it is very important to get lots of input.
At the end of the day, it comes down to some person some place having the courage to actually make the difficult decisions and move this enterprise forward.
The last recommendation that I have is, as this committee and others begin to explore how best to achieve this vision, I would very seriously consider private public partnerships.
This is not an activity that will be successfully achieved just through government efforts alone. I think there is something to be had for the entrepreneurial start-up culture that could infuse an activity like this.
Then let me just close by describing for you, in fact just stating for you, the quote that you use in your own report, shaping a vision for the 21st Century health statistics, which is from George Bernard Shaw.
I dream of things that never were and ask, why not. That, I guess, is my last recommendation. Thank you.
DR. GARDNER: Thank you for the opportunity of being here. Let me just show you where we are and where I would like us to be.
Even within our own institution of Intermountain Health Care in the Intermountain region, it is very, very difficult to make these things happen.
I have worked with the system for 30 years as kind of the health system. That system gathers data from a whole variety of places, automatically puts it in the record, stores that data so we can do integrated decision making from the system.
I was at the veterans hospital in Salt Lake City just a week ago today looking at a computer that is an excellent computer system and was looking at vital signs.
Those vital signs were hand entered by a nurse, rather than coming from a bedside monitor. As I looked down this wonderful spread sheet of vital signs and data that people could quickly and easily review, was a temperature of 37.1, then 99.6, then 37.2.
We plotted the data beautifully on the screen and, as you imagine, it went down and up like that, which had no meaning.
So, we have come from a world that is strictly free text and we need to get to a world that is very highly structured and organized so that we can use the system to do decision making.
Can you imagine what a decision making algorithm would do with that? Of course you can say, well, we will compensate for that. If it is anything above 50, we will say that certainly must be degrees F.
That isn't where we ought to be. We ought to have standards, we ought to have structure, we ought to have organization.
So, your push to develop standards is certainly strongly supported from my side.
This just shows the infrastructure in a critical care unit, a nurse at the bedside. There really is a patient down there, the bedside monitors, the IV pumps, ventilators and a computer at each bedside.
Now, one day that will all have one screen to display the whole thing, perhaps, but I would show you now that the ventilator screen now has two computer screens on it.
I have nurses who complain to me, Dr. Gardner, why do we have to read data off this screen and enter it into that one.
We need to set up interfaces and standards so that we can do that more easily. We have tried. The process is very difficult. It is a very long-standing problem.
Anything that your committee could do to help us set up standards to do the data input, which is the hardest single task that we have to deal with, would be greatly appreciated.
Everyone loves to review data. Everyone hates to enter the data. Al Pryor, who is one of my colleagues, says that everyone wants one screen to display everything they want to see, and one button push to do everything they want to do.
I will show you an example that gets almost at that as we go along.
Two examples of using the system for this, it was clear, from animal studies, and then from our own data, using data from this help system, we said, when is the best time to give patients antibiotics.
So, we are using the health system as a public health device, if you will. We went back and looked at the data and found that if you gave the antibiotic just before the incision for surgery, that was the best time to give it.
If you gave it too early, the infection rate was higher. If you gave it too late, the infection rate was higher.
How do you make that happen? We told everyone this, and yet, nothing happened, until we put a simple little notification on the surgical schedule that said an antibiotic should be given.
We then went from about 60 percent compliance to well over 99 percent compliance now, and our infection rates have gone down dramatically.
This isn't a technology problem. This is a communications problem. We have to be able to integrate systems. We can't integrate systems unless we have got standards.
Does it make a difference if a patient gets an infection? Again, this is a public health use or a statistical use of the data.
We found that you have got a six times greater chance of dying if you get an infection following a surgery, that there are five days greater length of stay and it costs about $5,000 more, clearly an incentive to prevent the infection.
We then went -- this is a case where we have got one screen that pretty much displays everything. As you can see, it is quite busy.
It tells us who the patient is, what room they are in, their gender. Abdominal sepsis was their diagnosis.
The maximum white count was 21, the maximum temperature is 38.7. It has gone up a bit. Then the computer makes a recommendation as to what antibiotics should be given.
These data, if collected by humans, take roughly 15 minutes to gather. The computer gathers it and presents it in roughly 10 seconds.
You can only do this if you have got structure in the data base, if you have got standards.
We have now moved this out to other hospitals in our corporation, but it is very difficult to do, because the definitions are different, structure is different, and we have had to go back through and pay a huge price to do simple things like this, an explanation of what is in the record, some things about cost.
Computerized antibiotic assistant took only about three-and-a-half seconds to gather all that data and present it. It takes humans about 15 minutes.
Antibiotic allergies decreased from 13 percent to six percent. Adverse drug events decreased from two-and-a-half percent to .7.
The excess doses decreased. The mismatch between known susceptibilities decreased from 18 percent to two percent, and time they were on antibiotics for too long went from 5.9 to 2.7 days.
With that capability, we were able to reduce antibiotic use, reduce mortality, reduce adverse drug events and reduce costs, 42 percent reduction in cost.
We can do that because we have structure and standards. If we don't have those -- you have made that recommendation in your report -- I think you need to be even more aggressive with that, and push the envelope forward, so that we do have standards, so that we can share data not only within our own institution and own enterprises, but across institutions within our community.
I spend half of my week at the University of Utah and half at LDS Hospital. They are two competing organizations.
I kid that they each have helicopter service with sidewinder missiles and whichever shoots the other one down gets their first, picks up the patient.
I have halfway serious about that. It is almost impossible to share records across those two institutions, which is a tragedy.
Adverse drug events are a problem . We first looked at our adverse drug event rate a little over 10 years ago. We found we only had nine adverse drug events in our 425-bed hospital for the whole year. We just felt so good.
We then used the computer to look for identifiers, like an antidote being given and some other things. The next year we computerized it and the adverse drug event went up to 373.
As you can see, it went up even further than that. The thing is, with the tools we were using and the reporting mechanisms that we had, we weren't reporting the adverse events that needed to be reported.
We now can find them. We can find them more quickly. We can know the things that can be done to prevent them.
Does it make a difference if you have an adverse drug event? Yes. You have got about a three times greater chance of dying.
You spend two more days in the hospital and it costs $2,000. I don't want to have an adverse drug event in a hospital.
Now, the issues are complex. The Institute of Medicine's recent report, To Err is Human, really, if you look at these, I think there are 43 different things that we have outlined, and there are probably another 20 that are important that would cause an adverse drug event.
To do all these things, we have to have standards. We have to have things in place so that the physician entering the order, the transcription process and all this works. We don't have those standards in place that are easy to use today. We need them.
So, adverse drug events are a problem. I think I have convinced you of that.
Then I would just take a look at some things that some folks in Manchester England did a couple of years ago, as they looked at the change in the information systems.
They looked at where we are and where we want to be. These are their gaps. These are their jumps.
Information, I have talked about that, the information we need to make these decisions. The VA hospital system is an example of how not to do it.
Technology, the technology isn't the main problem. In fact, I tell my first year graduate students that this business is 80 to 90 percent politics and sociology and 10 percent technology.
Processes, the way we are currently doing things and the way we want to do them, you know, I wish we could just pull the rug out, start over with medicine. I think we could do a little bit better job.
We can't. We sort of stepped into the world. This is what it is now, and we have to change some processes. There are some key processes that need to be changed.
Anything your committee could do to make a more structured process with nursing and physicians would be a tremendous help.
Objectives and values. I walk into our emergency room and they say, we want to computerize. I talk to five different physicians, guess how many strategies I get? Six. It is very, very hard.
We need to, I think, provide some training in the process of how do we set objectives, and we need to establish, what are the values.
I can present to you these values. I presented them to our hospital administration and they said, hey, Reed, we are in competition with somebody else in the community and we are spending two tenths of a cent more on computer systems. We are spending too much. The other system does only discharge, transfer and laboratory things.
So, we need to establish some better ways of valuing these things. I have tried for 20 years. That is a very, very difficult thing to do.
Having you as a committee and those in the field help us with establishing value would be great.
Staffing and skills of people, we put a system in labor and delivery. The largest single problem we had is that we had nurses who didn't know how to use Windows. We even had a nurse that had never typed on a typewriter.
So, we have to provide staffing and skills for people. Management and structure are important.
Many times we have gigantic gaps between what is the current reality and what people think should be. If there is anything that your committee could to do help with that, that would be tremendous.
For me, the two things that I would push are establishment of standards. The patient identifier, I know that is a huge one.
I can tell you that I am in our system as Reed Gardner, Reed M. Gardner, Reed McArthur Gardner, and Rulon Gardner, the wrestler from Wyoming, his father's name is Reed.
I don't look like him, so I think you can tell I am not the same guy. But there are four Reed Gardners in the Salt Lake City area in addition to me.
Being able to identify them and cross those records would be a tremendous benefit to me and the computing business.
If I go from one hospital to another, I want to be able to take my record. I want it in machine readable form, structured so that we can do decision making from it.
You are going in the right direction. I applaud you for that. Push it. Push the identifier thing. I know it isn't popular, but we have got to have some sort of common identifier. Thanks.
DR. MIDDLETON: Good morning. Blackford Middleton. It is a great pleasure and honor for me to present, once again, to the working groups of the National Committee on Vital and Health Statistics.
I am particularly honored to be asked to testify before you, the members of the work group on the national health care information system and the work group on health statistics for the 21st Century.
The intersection of these two areas lies at the heart of my own professional interests. I received graduate training in medicine, chronic disease epidemiology and health services research, focusing in medical informatics.
Our work now focuses on improving the abilities of health care providers to manage individual patients, as well as populations of patients, linking practice at the point of care with electronic records, and allowing health care consumers to play a greater role in their own disease management and wellness through the shared on-line electronic record.
Prior to joining Medscape, my academic research focused on clinical decision support and expert systems. At Medscape, I am the chief medical officer, responsible for providing guidance and oversight for all clinical issues in our software products and services.
Just a word about Medscape. We are a vendor of clinical information management tools for physicians and patients, a provider of health care information for professionals and patients, and a provider of a variety of online services, including next-day medical conference summaries, peer reviewed content, accredited CME and online health records.
We are devoted to improving the health care experience for providers and patients through the use of the digital health record technology at the point of care, a very small piece of the national health care information infrastructure.
After 15 years of work, we now have in excess of 30,000 clinician users of our technologies, including electronic medical records, our Medscape mobile product and transcription services.
These clinicians have created in excess of 15 million records on line. We have several thousand patients now using Aboutmyhealth.net, the consumer channel to the secure online health record.
My objectives for today are to, first, provide commendations for a job well done in producing the two reports, the interim report, Toward a National Health Information Infrastructure and A Vision for 21st Century Health Statistics.
Both provide an excellent vision into critically important areas of the U.S. health care delivery system.
I will first share with you my reactions to the report, describe relevant aspects of our work at Medscape pertaining to the reports.
I will then describe the barriers and end result issues as I see them, and present some possible tactics in closing, which might help us create forcing functions for development of the NHII.
First, in reacting to the reports, I think the visions outlined in the reports are very consistent with my own work and the work of Medscape.
We agree that critical issues remain to be solved in protecting the privacy of personally identifiable health care information.
Critical standards need yet to be developed to ensure secure interoperability between health care information systems.
The recognition of information as both a private resource and a public good lies at the center of critical issues surrounding the use of health care information for care delivery, health maintenance, health care operations, medical research and maintenance of the public health.
The report correctly identifies challenges yet to overcome with respect to the cost associated with building out the NHII, and correctly characterizes the NHII as a necessarily heterogeneous system of systems to support clinical information management broadly.
In our work, we agree that there are three different dimensions to clinical information management. Our product Aboutmyhealth.net is analogous to the personal health dimension as described in the report.
With this tool, patients can see certain aspects of their online health record, and communicate with their health care providers or their proxies.
The health care provider dimension, of course, is analogous to the notion of an electronic medical record or a digital health record.
Whether it is delivered in client server technology within an enterprise or through new internet-enabled ASP models, this gives the provider a means to capture clinical documentation, access tools for medication administration, formulary compliance, outcomes reporting, clinical communications, as well as integration with a variety of knowledge-based tools at the point of care.
The community health dimension is analogous to our online reporting environment, although as it is described in the interim report, it goes far beyond what we have been able to accomplish to date.
So far, we allow users the ability to report upon their own patient populations and to assess their compliance with national standard guidelines of care.
Soon, they will provide the end user the ability to contrast their own experience against the experience of similar or reference populations.
We have not yet integrated data from sources beyond the systems typically interfaced to computer-based patient records, such as the hospitals, laboratories, transcription, et cetera.
I look forward to the day when the core content in the community health dimension as described in the report is available to users of electronic health records at the point of care.
Such population statistics and insights would be very valuable to each and every clinician. For example, access to community-wide microbial sensitivity information at the point of care could be extremely helpful.
The current reality, however, is far different than the vision described in the report. Why is the penetration of electronic record technology so low in the marketplace?
The lack of sufficient technology standards to the cost of health care delivery systems are usually identified as the culprits.
However, even with today's basic interoperability standards, basic information exchange between systems is feasible.
More sophisticated interoperability may require additional syntactic and semantic messaging standards, but a huge amount of information may be exchanged between systems today.
By and large, the reason that penetration is low is that, while physicians are often called upon to make health care information technology investments, they are capital poor in the current health care environment.
Certain hospitals and integrated delivery systems have capital for such investments, and clearly they are investing in health care information management technology.
New models for delivery health care information markedly changed the investment dynamic from one of a capital-intensive outlay to a subscription software model.
This change is positively affecting technology adoption rates.
The second major reason that health care information management technology is only slowly being adopted is that the market forces that would benefit from such technology are not aligned in most cases.
In organizations where the providers, the payers, the hospitals and occasionally the employers are aligned, significant technology investment has occurred, with dramatic results.
For example, the Kaiser Permanente and Veterans Administration health care systems clinical information management technology has been the focus of large scale capital investment.
In the private health care marketplace, however, such alignment rarely occurs. The tactics presented at the close of these remarks aim to align market forces to drive technology investment in the NHII.
The two interim reports provide an outstanding vision of what might be done with respect to the NHII. It should be noted, though, that less than five percent of outpatient clinics, and somewhere between 10 and 20 percent of hospital environments have anything even remotely resembling a computer-based patient record, or systems for physician order entry.
Most hospital environments have well-established departmental clinical systems, such as clinical lab, radiology and legacy systems for patient accounting.
Rarely is there a true integrated clinical information management system designed for the clinician, not to mention the health care consumer.
In the outpatient setting most clinical practices have some form of practice management system, but this rarely serves the needs of clinical information management for the physician and care providers.
Recently, as I have mentioned, the ASP model has spurred technology adoption and, when hosted by a third party outside the health care enterprise, may significantly reduce costs associated with technology investments.
In this slide, we see a wonderful depiction of the simple data flow arising from a single clinical encounter in clinical practice.
This is created by the California Health Care Foundation. In this wonderful presentation, the foundation details all the clinical data arising from a single patient visit for sore throat.
When one considers the clinical encounter, the documentation, the physician's orders, all the attendant implications around the clinical encounter for labs, prescriptions, results, et cetera, even the immediate transaction set is considerable.
Secondary and tertiary waves of transactions to third party administrators, the pharmacy benefit managers, the HMO, the claims clearinghouse, the state and federal health authorities and, potentially, research institutions, other clearinghouses and public health authorities, amplify the problem.
The objectives, then, for the NHII must be to allow efficient communication of clinical information between people and between systems to promote health, support health care delivery, research, and the maintenance of the public health.
As previously described, given the heterogeneous state of not only health care delivery systems, but health care information management systems as well, achieving this vision is a tall order indeed.
In the interest of time, I am going to skip a couple of slides here. With the emergence of mature, clinical information management technologies such as described above, one may ask, why have we not yet achieved public consensus and commitment toward pursuit of a national health information infrastructure.
In their outstanding paper, will disruptive innovation cure health care, Christianson and colleagues reviewed the many factors that have impeded technology adoption in health care historically.
The authors describe a disruptive technology as that which allows those who were previously unable to do something which historically required the skill of professionals.
The authors point out that the various stakeholders in health care often suppress innovative technologies which may threaten their status quo.
Certainly, it is easy to identify a wide variety of issues that provide barriers to change in U.S. health care today, or opportunities.
First, among physicians in practice, there is fear of change, given that so much change has occurred already and so much of which has occurred adversely impacted their ability to practice medicine and derive value for their services.
For physicians now, losses loom larger than gains. In addition, there is organizational resistance from the entrenched stakeholders.
Hospitals are striving their inpatient census, physician organizations are striving to maintain their autonomy, health maintenance organizations are striving to reduce hospital and patient census and physician autonomy, et cetera.
It is no wonder the consumer and the provider are frustrated beyond belief.
Christianson and colleagues describe certain patterns of regulatory resistance, which also inhibit technology adoption.
For example, they describe how nurse practitioners and other non-physician allied health professionals may perform as well or better than physicians in certain situations.
For example, in the cold and flu season, studies have found that nurse practitioners may do just as well as physicians when caring for simple problems, and patient satisfaction may go up when more time is spent with them.
Yet, in this country, many states have regulations that prohibit or restrict nurse practitioners' practices in inefficient ways.
One may posit that if nurse practitioners were empowered to practice more independently, they might choose to maintain their relationships with physician colleagues via the NHII.
The same might apply for community and regional physicians with their regional academic medical centers.
Need for such connectedness is a driver for the NHII. So long as there are regulatory impediments from allied health practitioners or telemedicine across state lines, there is a barrier to the NHII.
I believe another form of resistance may be described as structural resistance where, due to the episodic nature of care and the information imbalance between physicians and patients, we have not yet seen consumer demand for service and convenience similar to the consumer demand for service and convenience in other industries.
As selected patient populations become very well informed, however -- for example, patients with HIV disease -- in some cases they become as well informed as their providers.
On-line discussion and chat rooms arose to provide peer group support when it wasn't available from the traditional providers.
The demands of HIV care also prompted certain physicians to provide special services for these patients. The same pressures don't apply to most routine care cases.
Lastly, it may be said that the simple fact that the U.S. health care system is in such chaos that this alone prevents significant new technology adoption for health care information management.
Many physician practices and many hospitals are struggling simply to survive amidst organizational upheaval, reimbursement restructuring, cost containment, and managed care.
In this environment, investments in technologies that do not have immediate benefit, or at least are not perceived to have immediate benefit, may be difficult to justify.
In addition, given the intrinsic flux within the system, with rapidly changing organizational affiliations, mergers and de-mergers, it is difficult to make investments in technologies that may serve to better interface one health care setting to another, as Reed pointed out.
In this scenario, the politics of information would hold that each entity has its own copy of any and all health care data that it needs to run its business, and it doesn't trust any other entity to share or hold any part of its data, as it may be used against them.
What are the unresolved issues? There are numerous technology issues which remain unresolved for the national health care information infrastructure.
I believe that, even if they were completely resolved, we would not see widespread adoption or consensus to pursue the NHII.
This is because, as Reed has pointed out again, the sociocultural issues are equally, if not more, important.
I think the principal issues that remain unresolved for the NHII are not related to technology, but rather, related to societal issues -- perception, privacy rights, data ownership and property issues around health care data.
We have yet to adopt in this country a national patient's bill of rights, or other legislation which may serve to define health care data ownership and property rights.
In the Medscape white paper on this subject, which I have included in the handout if you are interested, we take the position that the patient is the owner of his or her health care information.
The physician who creates a chart has limited property rights to their records, but is not the owner of the information contained within it.
The complexity of this issue alone impacts not only data privacy, security and protection issues, but also derivative uses of the data, which will be discussed below.
A related data ownership issue is the boundary-less condition that exists when a health care payer is also a patient's employer.
In this setting, there are no walls between the entity reimbursing for health care services and the patient's employer, as they are one and the same.
A clear delineation is needed in such settings to give patients reassurance that health care information won't be used to adversely influence work place decisions on hiring, promotion, projects, et cetera.
Providers need a level of comfort that health care information won't be misused by the employer, or that patients may not be forthcoming, given the privacy compromise and, thus, conceal critical health care information from their providers.
Yet another related issue to data ownership is data monetization. Given that we do not yet have a robust property model applied to data, it is difficult to monetize the data in a coherent way.
What are reasonable expectations for patients who contribute their anonymous data in aggregate form for health care research.
What are reasonable expectations for the providers who may have been involved in recording and gathering health care information from patients as well?
Finally, what is a reasonable expectation for data that is used in secondary analyses? In each case, either the patient, the provider and the health care enterprise or data custodian may have reasonable expectations to participate in the health care data value chain.
Answers to such questions are difficult in the absence of a national policy on patients' rights and privileges with respect to personally identifiable health care information, and a model for applying property constructs to data.
There is hope that we are in the midst of a transition where such questions may at least be partially answered with the final regulations from HIPAA and hopefully a patient's bill of rights.
Lastly, I believe the average physician and patient do not recognize yet the benefits which will arise with the development of a national health care information infrastructure.
I am looking for the time when a famous politician or someone from Hollywood is saved across the country because they have an online health record.
Physicians have yet to see any indication of an absolute need for the adoption of any of the components of the national health care information infrastructure.
The HIPAA bill is looming large now in the clinical consciousness, and may force some clinicians to adopt clinical information management technology to address HIPAA requirements.
However, many physicians are simply taking a wait and see attitude before making even the smallest of steps, despite the carefully documented benefits which may accrue to the quality of care, reimbursement and productivity when using electronic medical records.
I believe additional research is necessary to assess broadly the impact of components of the NHII, for example, EMR or online health records, on health care service, quality, costs and health care outcomes across populations.
Particularly difficult research questions must address the impact of network effects and other systems effects within and between health care enterprises on individual and population health.
In addition, the health care consumer is largely unaware of the state of clinical information management in the United States today.
All the consumer is aware of is their frustration with accessing care, health care and pharmaceutical costs, difficulties with health care reimbursement, and for 44 million Americans, the absence of adequate health care insurance.
I believe that the average health care consumer is now focusing on the privacy and confidentiality perceived risks, rather than the potential for significant improvement in health care service delivery and convenience.
When the average consumer perceives that having an online health record is a good thing which can make them feel better about their health care or maybe even save their life, only then will it become a fixture in their expectations for health care delivery.
To begin to make way for an NHII, I believe we first must begin to make evolutionary changes in the health care delivery framework itself.
Implementing new technology for technology's sake alone is not likely to be successful. If, on the other hand, new technology is being implemented in response to requirements expressed by an evolving health care delivery system, it is much more likely to be successful.
For example, if we have the need to triage cognitive services of clinicians to appropriately match the clinician's skill level to the difficulty of the patient's medical problem being seen, this will have implications for communications and data sharing networks across the health care environment.
This has been the goal of telemedicine research for decades. Early experiments in telemedicine have looked at these issues in a variety of ways, typically as a point-to-point extension of a single health care delivery enterprise, rather than building upon the conceptual framework of an NHII.
Training average clinicians to use communications and data sharing networks would naturally evolve the local practice of medicine to an NHII-based model of medical care, where cases could be matched to the appropriate clinician for cognitive services, whether across town or across the country.
The success of the internet and other industries has been to disintermediate people or processes that separated consumers from the sources of products or services they desired. The same might occur in health care.
We already see patients going on line in record numbers to access health care information on the internet themselves, to inform their own thinking about their health care conditions, medication, life style and other issues.
In certain situations, patients may not need to visit the doctor at all. A simple clinical dialogue over the NHII may suffice.
From a technology point of view, however, the NHII may best be achieved by investing less money in high end complex technologies and more technologies that simplify complex problems.
In their paper on disruptive technology, Christianson and colleagues describe the need for changing the distribution of the provider mix to allow for the vast majority of patients with simple problems to be seen by allied health professionals rather than physicians.
TCPIP is a relatively simple technology that was disruptive. HL7 was a disruptive technology for health care information systems.
For the NHII, we should focus research on simplifying complex problems like clinical information management methods for basic secure interoperability, simple document and data representation and ease of use for provider and patient alike.
Potential tactics to approach the NHII. In addition to technology and policy initiatives outlined in the interim reports, the following may serve also as a motivation for a national health care information infrastructure.
First, define contribution to health insurance. As employee benefits in health care defaults from defined benefit to defined contribution health plans, it may reasonably be expected that employees will have increased demands for health care quality information, satisfaction information and other metrics pertaining to their choice of health care providers and plans, and the purchases of health care services.
When patients are managing their own health care dollar, they will be increasingly sensitive to health care delivery service and convenience issues as well.
Enabling the NHII in ways that have been described above will theoretically allow patients access to performance data on physicians, hospitals and plans.
Value-based health care purchasing. Similarly, employers who are facing escalating health care costs, particularly in the area of prescription drug benefits, will also look for means by which to judge their health care expenditures.
Health care purchasing cooperatives and other business coalitions have already formed around the country to seek to rationalize and control their health care expenditures.
To do so, they will have need for health care service, satisfaction, quality and outcomes data, with which to make health care purchasing decisions.
If the buyer is demanding such performance data from the health care delivery system, the system itself will need to adopt tools for gathering and managing clinical information to meet this need.
Patient safety requirements. Only recently it has become widely recognized, thanks to the Institute of Medicine report, that medical errors are one of the leading causes of death in this country.
Most pundits agree that medical error is not due to gross physician negligence in most cases. Rather, it is due to the absence of a safety net or systems infrastructure that can support decision making at the point of care.
Physicians all too often are operating without a complete state of knowledge regarding the patient at hand, not the most relevant and applicable best practices or clinical care guidelines.
Both health care consumers and health care payers have now recognized that medical error may be a leading contributor to health care costs, and thus demand for improved patient safety will necessitate implementing components of NHII, particularly tools for improved clinical information management and decision support.
Computerized prescription management and physician order entry. Perhaps the best way to apply scarce resources in technology investments in health care is to apply them to the process of physician order entry and computerized prescription management.
It is recognized that 85 percent of all health care costs result from physician decisions at or near the point of care.
Clinical decision support systems can positively impact behavior at the time of physician order entry. Standard order sets, or clinical guidelines may be provided to the physician in a helpful manner that makes it easy for them to be followed.
A specific example is in the area of computerized prescription management. In this case, physicians may benefit from automatic medication interaction assessment at the point of care to avoid untoward adverse drug events, or adverse drug events.
The technology for this type of clinical decision support is widely available and robust.
As health care consumers and health care payers become increasingly data driven, the need for detailed evidence regarding clinical practice will only increase.
With the use of electronic medical records tools, a rich repository of structured clinical data is accumulated.
I believe this will enable new forms of evidence-based medicine or evidence-based practice to arise, where real-time comparative analysis may be performed for individual clinical decisions against reference populations drawn from the clinical data repository.
The clinical data repository may be used to create tailored clinical prediction rules, which may give an individual patient a risk assessment or prediction, given the population model.
Collaborative disease management. Perhaps the strongest pressure, however, for an NHII will come from the consumer, whose expectations for health care service and convenience will necessitate information technology investments among all stakeholders.
The consumer now has the expectation of round-the-clock access to online banking, information resources on the internet, travel services, et cetera.
I believe a new model of chronic disease management will soon emerge where patients and providers are connected continuously over the online health record.
This will allow the patient to record symptoms and certain physiologic parameters remotely, and have them securely sent to the physician's record system.
By the same token, the physician will now have a continuous view of the patient's progress and care management, rather than an episodic view.
Two areas of reimbursement reform may provide a profound stimulus on development of the NHII. First, quality benefit programs.
As physicians in health care delivery systems become increasingly judged on their performance with respect to various measures of patient satisfaction, quality and outcomes, physicians will be incented by progressive health care delivery systems to perform on these measures.
In my clinical practice environment, for example, full time physician use the EMR to record key clinical data for all appropriate patients.
At year's end, the practitioner's compliance with standard preventive services guidelines and other enterprise health care protocols and goals is assessed.
If a physician is over the target threshold, they get extra income. The physician is incented to use the electronic record tool as the recording tool because the data from the record is used to bench mark the physician against target thresholds. This sort of buy in has been very successful.
Differential reimbursement for automated clinical information management is another idea. While we have now seen several of our customers experience a malpractice premium discount due to their use of electronic medical records, we have yet to see payers recognize the benefits of using EMR and provide a differential reimbursement for physicians using them.
Because the quality of the data arising from a well-designed EMR may drastically simplify the reimbursement process for the payer, this is recognized as having value to the payer which may be shared with the physician.
Historically, payers and provider incentives have not been aligned for making information technology investments.
In summary, then, I would like to echo the comments made by Reed and Peter. I think we must continue to pursue the development of health care informatics standards.
I would suggest focusing on prioritizing standards development in a cost effective way; that is, pursue standards that have immediate impact, or pursue the 80/20 rule, such as development of a minimal health care data set.
The NHII will not result from technology innovations alone. We need forcing functions in the marketplace, in the business models, which will create requirements that will stimulate adoption of the NHII.
We need to define health care data, privacy, confidentiality and security attributes, as well as property rights for health care information, so that we can pursue the monetization of the health care data itself.
We need to equitably distribute costs of the NHII by allowing self-interested parties to pursue the NHII, most likely through incentive programs and reimbursement reform, as I have described above.
Finally, leadership is key, and I turn to the committee to continue to demonstrate its leadership in this area. Thank you.
DR. LUMPKIN: We are a little bit over time, but I think we can stretch our agenda a little bit and take some questions.
I actually have a couple that were inspired by Peter's presentation. I would like each of the panelists to address two questions. These two questions are who should lead and who should pay for the system. Peter, you asked the questions, but I noticed in your presentation you didn't answer them. If you could give us your opinion on that?
DR. JUHN: Okay, who should lead, who should pay. The leadership has to be unbiased, credible and having public backing.
Therefore, that forum will allow an opportunity for government to actually step up to the leadership plate.
As far as who should pay, the payment for this really depends upon, as I stated earlier, the business case for actually putting this thing together, and the incentives and the alignment of the incentives that occur.
I think the who should pay is all those stakeholders who would actually benefit from having a system like this in place.
For instance, the consumers should pay in some fashion. The providers should pay in some fashion. The other stakeholders should pay in some fashion.
I think it is that linkage to payment, and in the previous presentation we saw this whole movement to define contribution.
I think that, if you will, gives you an opportunity to link the benefits of a system like this directly to the consumers and basically make a very straightforward value proposition to them.
If they find value in having personal online medical records, they should actually pay for having that value.
DR. GARDNER: Who should lead? I would take the example of the National Library of Medicine with Pubmed or the Medline capability, and even the internet.
I think in this case, there were people with Medline who were, in fact, in a competitive business.
The government decided to go ahead and make the Medline free. I was in Taiwan a year ago and it was used there. In Southern Utah, I used it while I was working on a manuscript.
That public service is of tremendous value. I think there is a certain amount of this that the government and committees like the NCVHS need to take the leadership.
I think there is need to cooperate with industry and the like. For example, the DRG ICD-9 codes are used. Other coding systems are used.
We need to have some standardization and I think government needs to take that leadership position.
The question of who pays? The government needs to pay for the standardization process, I feel. Within Intermountain Health Care and the university, I sit on executive boards of both groups.
I hear the university complain that Intermountain Health Care can do things for a third less cost than the university can.
They both run teaching programs and the like. I think there is an opportunity for the institutions to pay for the activities.
However, building the infrastructure to get the thing started, I don't think, is a cost that each institution should have to pay.
If the infrastructure was there, and the institutions could attach onto it and use the standards that are available, I think each institution would do well for the gathering of the data and providing high quality health care at less cost.
DR. MIDDLETON: Boy, those are the easy questions. As I said, I think there is an opportunity for continued leadership between the NCVHS and, intriguingly, the NCHS as well.
I don't think we are going to overcome the fundamental structural issues, if you will, around values with respect to health care in this country until we have marked organizational and reimbursement reform.
The question is, do we have to wait for a national crisis. We already have the crisis of confidence in the health care delivery system.
Do we need a worse crisis to spur us to act upon health care organizational and reimbursement reform.
I am not personally sure whether a universal health insurance program or universal health coverage necessarily realigns incentives for investment in technology, because it obviates a lot of the organizational chaos that I have described.
I think as many pundits have said, that will proceed in an evolutionary change pattern as opposed to a revolutionary change pattern.
Therefore, in the interim, we still need to have, as has been pointed out again, increased support and development and perhaps requirements for the adoption of health care information standards.
I would suggest, again, starting with those things which are simple first and then seeking to scale the mountain, if you will.
Standards around minimal data sets, around the minimal chart attachments, if you will, for claims, around secure interface interoperability issues, or around XML document-type definitions and the like for basic information exchange between systems.
I think the leadership is going to come from public private joint ventures. I think the payers are now emerging, along with some of the pharmaceutical companies, as those who are willing to take the lead and make investments in the information technology to support the management of their health care dollar whether, from the employer's point of view, it is their health care risk or, from the pharmaceutical company's point of view, it is their health care investment.
That is who should pay. I think if we establish the value chain, people will line up to pay. There is so much value in the data, it is going to be like nothing we have seen before, even with respect to MP3 and Napster and all those kinds of intellectual property issues on other types of content.
Health care data has yet to have that debate even begun, because we don't have a property model for my information, your information, my clinic's information or my hospital's information.
All parties should pay and benefit, but we need to have some basic reform or some basic structure in place around data property rights and attributes, et cetera.
I think, just to close, the payers have yet to pull their oar in a manner that is equitable. Physicians and health care delivery systems have largely been paying the foot of the bill or the majority of the bill for health are technology investments.
The payers, often times, are the ones who experience the benefits, to whom the benefits accrue.
If the payers did adopt a differential reimbursement scheme or paid for quality, then we would see widespread adoption of this technology.
DR. STARFIELD: Dr. Gardner, in a nutshell, could you tell us why the VA system is not pursuant to the vision, if I understood you correctly?
DR. GARDNER: The VA system is a very nice system. It is a giant step forward. It is basically a free text system.
One of my good colleagues in the field, Clem Mcdonald, said there is nothing free about free text. You aren't able to process it.
We are getting better things going now for natural language processing, but we really need the structure in order for computerized decision making systems to work.
If there is so much uncertainty about the data, we as humans can have trouble handling it, but computers will fall flat on their face. We have to have the structure.
DR. MIDDLETON: I would like to follow up and reflect my transition from academic refugee to vendor of health care systems now.
I think it has to be remembered, or one needs to remember that yes, we do want to ultimately structure the data to maximally derive value from structured data that can be machine interoperable, et cetera.
However, from a clinician's point of view, simply having the last note goes a long way to informing the clinical decision making at that moment in time.
Yes, it should be ultimately structured, but let's not forget what paucity of information there is now, typically at the point of care, for most clinicians.
DR. STARFIELD: Paul, did you have a comment about that, too?
DR. JUHN: No, not at that time.
DR. GARDNER: Let me challenge that a little bit. We need to start somewhere, but gosh, we have been at this 30 years. We have had structured records for 30 years.
If we are going to say, well, okay, for the next 30 years we will do structured text, we will be happy with it, you don't get near the benefits you can.
The VA system is wonderful for a lot of things it does. I was just struck that there wasn't the structure that there needs to be. This debate can go on forever. So, I want to thank you all.
DR. LUMPKIN: If I could just sort of generally speak for a couple of minutes, and then we will have to move to the next panel, my specialty training is in emergency medicine.
I just came back from a conference last week in Philadelphia. I spent a fair amount of time in the exhibitor area.
It seemed to me that there were two different approaches to documentation in the emergency department, which may actually be a fairly decent test bed, given the current crisis that is existing with overcrowding and emergency physicians looking to technology to allow them to see more patients.
Also, another pressure is the E&N coding, and the system that is in place, and trying to be accurate in what you bill for.
Many of the systems that I saw took two basic approaches, one for calculating the E&N code, making sure there were adequate numbers of things done to justify the level at which it was billed.
One was a check-off system which, in effect, was a structured way of documenting. The second was based upon dictation and pulling out of the free text key words that would then generate the billing structure.
We have had a little bit of a debate. Which way do you think our system will go?
DR. MIDDLETON: I think both approaches actually have value. I am convinced, however, the more you can structure data at input, the higher quality the data is derived from the system.
The reason is that the clinician has the highest signal-to-noise ratio, if you will, of what he is trying to say to the system when he is doing it, as opposed to it being derived secondarily by coders, abstractors and/or MLP abstraction systems.
The challenge is, at the point of care, to balance structured data input issues, usability issues, with how much data you actually need.
If we were to structure the entire clinical encounter down to a SNOMED level of granularity, involving, for a moment, the lack of all the required composed code, it would take each physician one day to see a patient. That is not acceptable.
What we have to do is figure out how -- I believe in an information theoretical or decision analytic way -- how to prioritize the data gathering at the point of care.
Is it necessary to structure the examination of the left lower lobe lung field? No, it is not. Is it relevant, however, to structure, at a minimum, the patient's problems, medications, allergies, advanced directives, perhaps all the laboratory data, which is fairly easy to do with the given information models.
So, the trade off is around usability and the value of the data. Given that we don't have strong outcomes reporting requirements, people are pursuing this all over the map in a variety of different ways.
DR. GARDNER: I would say that if you could get the codes in at first, you would be better off. It is interesting, manufacturers have taken the code and then generated free text sentences from it to make it more applicable to people.
In fact, I have a son who is a physician and I have a son who is in medical schools. Those who are in medical school are learning how to develop structured coding schemes.
When they come out, they will have learned how to dictate and they will have learned how to do it very well.
For a time, we are going to have to do both. We are going to have to start clear back in medical school or in college for these people to learn how to do structure and learn the value and benefits of getting structured data input.
DR. STARFIELD: Can I follow up just a question on that? I don't know if any of you are familiar with the minimum basic data set that this committee has come up with. Is that a start?
DR. MIDDLETON: I have looked at that. I guess I would suggest -- I apologize if I have forgotten some of the details.
I guess I would like to see them specified in a manner that is usable, from the informatics point of view, in the implementation of a system.
That is, the code, structure and attributes of those data as required by a system, as opposed to a minimal data set for reporting alone. If that hasn't been done, I would be very interested in doing that.
DR. LUMPKIN: Jeff, last question.
MR. BLAIR: Peter, I thought I heard you mention an estimate of $200 to $500 per person to fund a national health information infrastructure.
Could you help us understand a little bit at how you arrived at those numbers?
DR. JUHN: Those numbers are derived from a number of studies that look at the creation of different elements of the system.
I guess what I was getting at, or the way I derived that number, was basically totalling up all those different components and looking at the per person charge of actually putting those into place.
MR. BLAIR: Is that in an article?
DR. JUHN: It is actually in a series of articles. The actual number, $200 to $500, is actually my, if you will, meta analysis of some of those articles.
DR. LUMPKIN: Thank you. You have been very helpful. I will ask the next panel. Let's see, are we going to move them to this end? Why don't we move you to this end. Let's take a five-minute break while we get the new panel set up.
[Brief recess.]
DR. LUMPKIN: We are now going to go to our second panel. I will ask the panelists to introduce themselves, and then we will proceed with the presentations.
DR. LANE: My name is Steven Lane. Once again, in addition to being the medical director of health information management at the Palo Alto Medical Foundation, I am also a practicing family physician and will really try to bring that perspective of the practicing physician trying to adapt to this technology to the group today.
MS. CAIN: My name is Mary Cain. I am the director of the private research program at Institute for the Future.
Institute for the Future is a small, independent non-profit think tank here in San Francisco and in Menlo Park.
We concentrate on creating environmental landscapes five to ten years out, forecasts of what the future might be.
DR. NEUHAUSER: My name is Linda Neuhauser and I am on the faculty at the School of Public Health at UC Berkeley.
I also direct the Center for Community Wellness at UC Berkeley, which produces mass media health and wellness information for Californians, primarily, but we also work elsewhere in the world.
DR. LANE: Okay, as I said, I am going to try to bring the perspective of the health care provider to this discussion on the interim report.
Just a few words about my organization. The Palo Alto Medical Foundation actually began in the early 1930s. It was started by the father of Dr. Lee, who is sitting in the back of the room.
It became a non-profit foundation in 1980, affiliated with a larger integrated delivery system, Sutter Health, in 1993.
With recent affiliations locally, we are now an approximately 400 physician provider group with about a million visits per year, and I believe we are now the second-to-largest medical group in California, after the Permanente Kaiser Group.
We have been involved in the implementation of an outpatient electronic medical record as part of an overall clinical information systems strategy for the last six years.
I have been trying to lead that process during this time. This is a somewhat shorter time line than the 30 years that Dr. Gardner has been working at this at Intermountain.
Ours has really been a primarily outpatient focus to date. Unlike the experience at Intermountain, we have been building our system based on commercially available products, rather than trying to build them ourselves from scratch.
I think we could be seen as a bit of a canary in the mine, as to what it is really like for a group to try to do this, and live this vision that has been outlined in your report.
We have, within Sutter Health, three different foundations that have been implementing the same electronic record system over this period of time.
Our focus, as I said, has been on the outpatient EMR. Within our organization, there is also work going on in an inpatient EMR, internet and intranet tools, as well as moving in the direction of providing web-based services to our patients.
Again, my perspective comes from real world experience. I still practice medicine half time. This is an experience in really trying to execute a part of the vision of the NHII at the provider level.
Through this process, we have been struggling with the challenges of information capture, storage, communication and presentation for the providers, especially.
We have been working to develop and implement standardized terminology within our various affiliated groups which perhaps could be seen as a microcosm for the national challenges of developing standards that have been discussed already this morning.
We have been implementing clinical protocols, practice guidelines and decision support tools within our system, and looking at how those really play out when they are turned on in the examining room with practicing physicians.
We have been operationalizing the spirit of the anticipated HIPAA guidelines to ensure the security, confidentiality and really the permanence of the individually identifiable patient information in our various clinical data systems.
This has really been quite a task. It is based on this experience that I really welcome the opportunity to share with the work group a number of specific comments regarding the barriers, or the challenges, as I call them, but I really do see them as barriers that I think do need to be considered at the health care provider level as we move toward the goal of a national health information infrastructure.
I was commenting at the break that this is somewhat different than my usual role of selling the idea of electronic records and clinical information systems to physicians and patient groups and administrators in our organizations. This is my chance to complain a little bit.
First, I am going to focus on the experience of the individual provider, who really, as you implement these systems, is faced with a number of new challenges.
The first I want to discuss a little bit is information overload. I think it is great to have all this information available.
There is no question that the goals of quality care are served. But when you are the doctor in the room on the front line, whether it is in the emergency room or the hospital or the clinic, the flood of information that you are presented with can be really daunting.
There is no question that it can present an increased demand on physicians' time, which has already been squeezed in the interest of productivity and financial return, down to about the minimum that one could imagine.
It is worth acknowledging the fact that ignorance can lead to efficiency. I think that that has really come to be the way that a lot of physicians practice.
A lot of physicians in busy practices will actually be seeing patients every five minutes. It is hard to imagine taking into account a patient's lifelong medical record and all of the various variables that might come to bear on the encounter, when you have only that much time, and that has to include opening and closing the door twice.
Providers really have to digest and respond to the information that we present them with. I think as we design these systems, we have to think about how that process will go on.
An example was raised in the first panel of computerized prescription management. We have implemented that within our system.
It really is, as Dr. Middleton said, very robust and very powerful. You have to get a sense of what that experience is like.
You are seeing this patient for the sore throat. You want to write a simple prescription and get them out the door and on to the pharmacy.
First, the system checks to see if the patient is allergic to the medication that you have prescribed. Fair enough.
Then it checks to see if there is an interaction with any of the other medicines that the patient is taking. This is also important, but sometimes there are, and then you are presented with that information and you need to think about it.
Many of the interactions really aren't clinically relevant. There may, in fact, be interactions between the drugs that are already on the patient's medication list that you hadn't thought about before, and you are faced with those.
Then there is formulary checking, to see if it is compatible with the patient's insurance. Then we have built into our system alternative medication alerts based on best prescribing practices that have been outlined by clinical pharmacists throughout out information, very helpful.
Then we have best practice alerts, which pop up on the screen, which can inform the provider that we have established organization-wide practice guidelines on our intranet, and would you like to click here and go view that for a while.
This process of prescribing a medication can suddenly become very complex and, again, is very different than the practice of pulling your prescription out of your white coat pocket, writing something illegible on it, and handing it to the patient.
I didn't mention that we also have to specify what the patient's preferred pharmacy is, so that it can then be electronically transmitted to the pharmacy.
So, decision support tools really have to be filtered to prevent analysis paralysis at the level of the provider.
Providers really need to have intelligent tools available to them, to assist in the management of various forms of data as well -- text, voice, data, images, all of which can come flooding back to them at the time of the clinical encounter.
One example that we are facing within our organization is the simple process of a physician trying to take an afternoon off.
Now they have to sign out their pager, their voice mail, their e mail, their clinical messaging. Why bother. Just stay at the office.
The second issue, from the provider perspective, is really, I think, a perception of loss of autonomy. Physicians, as many of us in the room know, are a fairly autonomous group and really like to call their own shots and practice sometimes by their own rules.
I am not arguing that that is right, but that is quite prevalent, I think, within the physician community as a whole.
As we implement these systems, we have to realize that the same system that allows providers to access this wealth of clinical data can also monitor the provider's use of that data.
We heard about the benefits of that in terms of bench marking, in terms of looking at indicators of productivity, of quality.
Physicians, as you might imagine, can perceive this as a threat, and that needs to be reckoned with, I think.
There are also challenges to adapting the new technology itself. Someone suggested that physician age may be a predictor of adoption of new information technology.
I don't know whether that is true or not. I don't know frankly whether it has been studied. We have certainly found that the senior physicians in our group express a greater anxiety about the requirements of changing their established practice pattern.
The cut point in our organization seems to be around 45 or 50 years old. Those that are older than that, who have been in practice a long time, really see this as quite a loss to their current style and patterns of practice.
If, in fact, there is a relationship between age and technology adoption, it raises a concern that possibly the clinical judgement and acumen that has been earned through years of medical practice might, in fact, be inversely proportional to the successful adoption of these new technologies, and the continuation in clinical practice.
We might be doing ourselves a disservice by alienating those physicians who perhaps have the greatest experience and the most to offer.
I think the doctor patient relationship also can be challenged by the introduction of these technologies. There is no question that the benefits of real time information access and decision support require that computers be brought into the examination room, to the hospital bedside, right to the point of care, as a number of people have mentioned previously.
Some physicians do perceive this as an intrusion into their communication with the patient, and incompatible with the process of developing a trusting personal relationship between the provider and the patient.
As patient information is codified and digitized and made available across the networks to any provider, what then becomes the added value of a long-term relationship between a doctor and a patient. What happens to the healing experience that can come about when that relationship is called upon in a time of illness.
What happens to the whole notion of continuity of care. Is it important any more when the provider's role is really to serve as an intermediary between a ill patient and their data base.
I don't pretend to have answers to these questions, but we are living some of these and I have physicians ask me these questions every day.
Control of clinical data has been discussed a bit. It was touched on in the interim report, and I wanted to make some specific comments on that.
I think that the goal of patient ownership of the data, of complete patient access to the data is laudable. I think we also have to remember that that may result in a change in documentation practices on the part of providers, who may be concerned about revealing sensitive information to patients in an unfiltered way.
Similarly, patients' ability to edit the medical record, as opposed to amend it, could introduce inaccuracies into data which had previously been entered by providers, and I think that needs to be watched for.
There was a mention in the interim report that information from the provider health record could be transferred to the personal health record based on patient permission.
Well, if we leave it up to the patient to determine which of their data is transferred into their record, how do we know they are going to make the right choices. How do we know that they might not miss some important piece of information that we want them to know about. I think that needs to be considered.
Similarly, if the provider's access to clinical information is restricted based on a rubric of appropriateness to the patient situation, who is going to determine that, and what impact might that have on quality of care, if a treating physician has access to only a subset of the information that might be available on the patient, and how might that impact the safety of clinical providers if we keep, for example, information about communicable diseases from them at the time of care.
I want to shift a little bit, in the few minutes I have left, to some issues related to the provider group. Cost has been raised.
The issue of who is going to pay, I think, really is very important. I agree with the previous statement that much of the cost has been borne to date on the backs of the provider groups.
There are capital costs which are really new line items in our budgets as health care organizations. The hardware, software networkings, the continual upgrades, are challenges for us to meet on an annual basis and might, in fact, represent an order of magnitude increase over what we were spending on information systems just a few short years ago.
Operational costs are also substantial. We have anticipated savings with the implementation of these systems in the areas of medical transcription, medical records maintenance and transport. We are actually seeing some of those savings really quite dramatically.
What we are finding is that there are probably some low level positions within our organization that we can start to take out of the budget, as we replace them with much more highly paid information technology professionals to manage these same systems.
The ROI is a difficult argument to have with your administrators.
Issues of physician income do come up frequently. The clinical data systems and the new methods of electronic communication do facilitate asynchronous and remote care.
We are trying to move as an organization quickly into that direction. The problem, of course is the reimbursement models for care provided outside the traditional office or hospital setting really don't exist.
I think that if the committee can do anything to satisfy the providers, it would be to look at those models and to help us figure out how we are going to get paid for the work that we are going to do utilizing these tools.
Data security is a real concern for the provider group. We heard about the two competing models of client server and ASP.
We are in what I believe is the enviable position to have built our systems internally, and are able to rely on our own capacity for data storage and communication within our organization.
I think that many organizations that are smaller than we will not be able to afford the cost of implementing these systems themselves, will be driven to an ASP model where their individually identifiable patient data will, by needs, reside on a third party patient data warehouse.
We all have heard of the problems within the marketplace, of what can happen to the security of that data.
When the data custodian falls on financial hard times, there is, in fact, value in that data and there are no legal protections in place currently for provider groups to really ensure the long-term safety of that data.
So, just to finish up, as I know the time is short, a couple of recommendations. One would be to involve providers in the discussion, as we move forward and we plan how to implement this.
That should include physicians, nurses, pharmacists and providers of what has been called alternative and complementary medicine. I think all providers need to be part of this discussion.
I think really focusing on this question of who is going to pay, I think if we rely on the market to provide solutions, that we really may inadvertently and irreparably lose important aspects of the relationship between physicians and patients that have evolved over the past 100 years of the practice of modern medicine.
While, as Dr. Gardner said, we may need to pull the rug out from under medicine and start afresh, I think if we decide to do that, we need to think about what the implications are for patients, providers and health care organizations.
MS. CAIN: I wanted to talk briefly a little bit about Institute for the Future. It is a think tank that has been around for 30 years.
The health care practice there has been creating health care forecasts for the past 15, and recently we revisited a forecast that we did for Robert Wood Johnson Foundation in 1987, at the end of 1997.
We found that 82 percent of the point predictions that we made were, in fact, correct or had come true in the 10 years that had gone by.
This forecast looks at the entire health and health care system in America including financing, delivery, medical technology, information technology, and then the demographics and consumer population as well.
I am speaking to you from a more general perspective than perhaps some of the people in the room here today.
At the same time, some of my relevant experience includes working with the info project at the University of Washington for the CDC.
Info is the information network for public health officials that came out of the FIPO group at the CDC.
What I did there was interview individual county public health department employees about the implementation of the first phase of info, which was creating a wide area network in the state of Washington.
I think Info is actually a wonderful example of collaboration at the state and federal level that the committee should consider in going forward.
My other research is at the intersection of the internet and health care. I have written two five-year forecasts in the past couple of years for the California Health Care Foundation.
The first forecast was a five-year forecast trying to create a general overview of how the internet might assist health care practitioners. We looked at the drivers and barriers of using the internet for health care. Then our forecast consisted of six large application areas where the internet will change how health care is practiced in the next five years.
Then the second forecast that was just released this past week, in fact, was a consumer segmentation of online health consumers.
We looked across health status and online health care applications to see what the differences might be in terms of motivation and behavior for consumers on line.
In response to the initial report, I agree with Peter. I think it is a wonderful vision. It is a pretty vague vision, in my opinion, at this point.
The next step that needs to be taken is to actually create a game plan, and a map for how you might move forward.
I thought it was interesting that we were asked to talk about technical and operational barriers, when I didn't see a lot of technical specifications in the report itself.
It would be interesting to respond to the next step in the process, which would actually lay out what the game plan would be technically.
I also think that the definition for the NHII is wonderful and all encompassing, but very easily could become a moving target.
If you are not certain of who you are talking about what you are talking, then it becomes easy to say, this is really not what we are trying to accomplish here.
My response to the report was to think of two potential challenges and two recommendations or suggestions as a result of those challenges.
The first is understanding who the target market is for what you are trying to do here. The second is understanding where investment needs to be made in the integration of information to move this forward on many different levels.
The creation of the NHII is going to consume a great deal of time and effort. I can see one barrier being the initial paralysis at the nature and size of this task that you have taken on.
I think it is really important to know where to begin, with whom to begin and how you can best lay the foundation for this infrastructure so it will encourage the use and development by others.
I think it is very important to identify the early adopters of this system. Who are going to be your first intensive users who will begin to populate the data bases with information about which they care, in which they have an ongoing interest, and for which they see a future.
For the personal health dimension, one of the results of this forecast that we just created is that all online health consumers are not the same.
They have very different needs in terms of health status, they have very different needs in terms of their concerns about privacy on line.
The chronically ill individual who looks frequently back at the same very disease-specific web sites has different privacy concerns from a well individual who may be responding to a promotion on line, or also may be responding very differently from someone who just got diagnosed with a serious illness.
Within that spectrum of health status, there is also another continuum which is simply the amount of attention an individual pays to their own health.
Someone who is chronically ill but does not pay a lot of attention to their own health on a daily basis may actually behave more like a well person, and someone who is well but hypochondriacal may actually behave more like a chronically ill person.
So, being able to tease out the differences in that consumer segmentation would be an interesting process.
Understanding whether someone is sick or well, why someone who is sick or well might create an online personal health record and what their threshold of privacy concerns are, vis-a-vis a desire for personalized health care and content, will map the likelihood that certain individuals will use the internet for health information, while others simply never will.
What we found in our consumer research is that, well, online health consumers are fickle and not loyal to particular sites for information, for transactions, for anything.
They respond to coupons, they respond to promotional materials, but they have no particular need to go back to an individual site.
I guess my suggestion would be to examine how and why individuals with different motivations might populate data bases, and in particular, in the personal health record dimension.
Also, having a sense of what the numbers are that we are talking about here, depending upon who your source is regarding market research related to online health consumers, it ranges from 55 million individuals in Cyber Dialogues research up to over 100 million individuals in North America for Harris Interactive, depending upon the definition and depending upon how they are counting these individuals.
One of the comments that was made in the report is that this might be supported by consumers. What would individuals be paying for, is my question, and why. Would they have the ability to opt out of paying for the system.
An aside is that I think defined contribution is a lot of consulting. It is the popular consulting fad right now, in management consulting.
For a significant shift away from defined benefits to, in fact, defined contributions, not just cost shifting, but in fact, defined contributions would require major change in ARISA and would also require employers to completely change their involvement with health care and health insurance, probably not something that is going to happen in a relatively tight labor market.
In looking at the community health dimension, the primary end users will be public health officials, whose work balances the needs of individuals and the public.
Understanding the range of public health departments, from large metropolitan public health departments with lots of resources, who are concerned about urban epidemics as opposed to smaller rural county public health departments where the local public health officer may also have a job as the school nurse, those individuals have very different needs, very different resources available to them, and have very different challenges in their everyday work.
What I found, in interviewing for the Info project was that individuals further out from the city had less and less time to overcome much greater challenges.
In Ocanogin County in Washington, there were no fiber optics networks when they started the project. There was no backbone whatsoever.
The local county government was opposed to bringing it in because they thought it was a bad idea for some reason, and it took an extra 18 months for that implementation to happen out there in that county.
Then for the provider health dimension, there have been a series of articles recently discussing what might be the killer app to bring clinicians online, and the clinician resistance to technology is pretty well known, and I think others have spoken to this very eloquently.
Another barrier addressed by understanding the target market is the concern for privacy and security of personal information on line.
The technology, obviously, exists. Information security is actually threatened most by the behavior of those that are handling the information and not the technology itself.
Consumers don't understand, for the most part, how the security of their information is handled. They certainly are not confident in the security of their health information on line.
Seventy-five percent of individuals surveyed earlier this year by Cyber Dialogue said they did not trust that the information that they shared on line would not be shared with a third party without their consent.
They also significantly changed their behavior or said they would change their behavior if they were searching for health information at their place of employment where their employer might be watching their behavior.
Harris also looked at this as it relates to -- compared American versus European public responses to the security of health care information.
They found that in a system where the government runs the information networks as opposed to social welfare, there is a greater deal of trust in the government handling that information.
There are also much stricter rules for handling that information and much stricter penalties in the European Union.
My second challenge and suggestion, area of suggestion, would be where investment is required to make this happen.
There is obviously investment required in the hardware and software itself, that a lot of the necessary fragments of the network definitely exist, but at this point, it is a matter of paving some of the cow paths that are out there, and being able to create the ideal network that we are all hoping for.
This is happening in an environment of traditional underinvestment in information technology from health care organizations, that health care organizations traditionally spend two to four percent of operating budget on information technology compared to seven to 10 percent in financial industries, also comparatively information-rich industries.
The investment also has to be in the integration of information, that health care information, as Blackford showed, is incredibly fragmented, and it is controlled by different groups who consider control of that information a powerful thing, and the territorial nature of these fragmented silos of information is something that will need to be overcome.
That also requires a decrease in competition between these groups that hold the power of this information.
I would suggest that you are in a position to create incentives for collaboration and consolidation of effort, that part of the investment would also be in the creation of alliances and relationships and addressing some of the more difficult political issues around sharing information.
I would also suggest that there is a need for investment in access. There is a need for an investment in consumer access, recognizing who the consumers are.
There is a need for investment in provider access, incentivizing providers to actually use the technology. There is a need for investment in access to make it equitable for everyone, whether in a rural or an urban setting, to have access to the power of these networks.
Finally, I think that there is a need for investment in networks, period. The internet, and increasing returns economics says that each person added to the network increases the value of the network overall.
So, a single fax machine isn't worth a heck of a lot, but a thousand of them create a community of communication.
What you are trying to create here is an incentive to join this network, a way to keep increasing the number of individuals, the amount of information and the amount of quality that can be brought by connecting everyone and integrating information. Thank you.
MS. LANE: I would first like to commend the committee on two excellent reports. I think they are a great start.
I have basically six ideas to add, to suggest adding to improve these reports. These come from my vantage point as kind of a grass roots worker with consumers around California, also other parts of the world. That is the perspective I will bring here today.
I will end up by suggesting that the NHII report be broader in scope, be deeper in specificity, be universally accessible, universally usable.
That the NHII be a result of many different partnerships, many public private partnerships, and that somehow the three domains that have been identified so far be more dynamically linked.
Whatever happens in the design of the NHII, that it be grounded in the experiences of real people. That is the vantage point I come from.
By way of background, I work with a group at UC Berkeley that has the mandate to develop health and wellness information for all Californians, and also to get it out to all California households.
This effort began 12 years ago, and it began rather badly. Since it has turned out well, I don't mind admitting to all the mistakes, and it has been very instructive, what these mistakes were.
We started out in the traditional, let's say, health educator, public health approach, in which we gathered together experts and determined what were the main health issues facing our California population.
We then determined what would be the best behavioral and health care solutions that we could apply to that, put all that information into a guidebook.
Then we had the presence of mind to actually take it out to the users before we published it. Now, that is a kind of radical idea.
When we did that, we took it out to diverse communities, and we were expecting they would say they liked it, and we would go ahead and publish it and get it out across the state.
Well, they trashed it. They said that all of our expert advice was for naught, that the topics we had picked were not the ones that really they thought affected their health particularly.
The solutions were condescending, impractical, not effective for them, from where they were coming from. Advice was nice, but they really needed to be connected into a whole variety of services in order to improve their health and well being.
So, with great chagrin, we went back, regrouped and decided to radically change our approach. What we did was to adopt a very participatory approach in which we said, obviously, what we are doing isn't working.
I think at the beginning of the session today, that John or Daniel mentioned that we have been doing health information badly for a long time. I agree. I have been part of that.
So, we adopted the philosophy that people actually know what they need, and they can tell us, if we are only open to it.
We began several years of going around the state and talking to thousands of people from all kinds of backgrounds, all age groups, all ethnicities, all kinds of health conditions, people with disabilities, all kinds of socioeconomic groups, all kinds of language groups and asking them, what did they think affects their health and well being, what would they do about these various issues that they are bringing up, and what services did they think they needed to connect to, to improve their health and well being.
Well, the results were very surprising. People did not talk about the kind of things that we public health professionals usually talk about.
In fact, a minority of the time did they ever mention what we would call a traditional health topic. Mostly they mentioned things that had to do with managing their lives, things like child care, dealing with violence, transportation issues, education, jobs, and the like.
They were very, very broad in what they thought affected their health and well being.
They also mentioned that for information to be useful to them, it had to be very, very specific. It had to deal with their neighborhood and at a very specific level. We were surprised by that.
They also mentioned that the services they needed to be connected to, again, had to be in their neighborhood and they needed to know a lot about these services, in order to connect up with them effectively and improve their health and well being.
This is what we learned. As a result of that, we took all this accumulated wisdom, plus the input of experts in many fields, and we developed what we call a wellness guide for Californians, what we call a life guide.
It covers a broad range of topics, and we put it in the words of the people who were to use it, put it in the format that they suggested it be in.
Then we worked with many sectors to make this come about. We worked with private industry, we worked with foundations, we worked with philanthropy, we worked with educational institutions and even government.
For example, one of the things that people said was, you know, help us connect to services. That was pretty hard with a statewide guide. It had to be 1,000 pages long.
What we did was to work with all the competing phone companies in California, no easy feat. We got them to agree to adopt a very simple people-oriented taxonomy of community services in the phone books throughout the state, that we could link into a very simple similar taxonomy in a guide.
So, no matter if you are in Sacramento, here in San Francisco or in Los Angeles, you could go back and forth and find an entre to the local services through the phone book. Anybody could use this.
We worked with advertising firms to find out the best marketing techniques that would help us get to people and interest them, motivate them, something that public health people are not necessarily known for doing in their educational materials.
We are now taking this print material and going on line again, in this same fashion, of having people determine what works for them on line, the format, the interface, the interactivity, et cetera.
That has been our experience. I think our of that local experience here, we have come across a number of issues that might be something of a microcosm of the issues that we are facing and thinking about in NHII nationwide.
I would like to share some of the ideas that hit us and see if they might be ones that would also be relevant to developing the NHII.
The first issue is the definition of health. I notice that both reports mentioned that it was difficult to have a good definition of health.
Nobody was particularly happy in this committee with the definitions, at least that is what the reports say.
There seemed to be a sense that we would like to move away from just a disease or medical care type approach in looking at health toward something else.
It was mentioned that maybe the WHO definition was better, that Utopian vision of perfect physical, mental and social health.
I think we are stuck there. We are stuck between somehow between disease and Utopia. We don't have a road map, a word that has gone around a lot this morning, on what is the pathway to get to this Utopian version of health.
So, I think that comes out of another issue that was brought out in the reports, that the factors that determine health are very complex, very difficult to know, which factors are really affecting people's health, and therefore how we should go with an NHII or anything else in health.
I would like to begin by just summarizing the current estimates of what affects health.
If we look at this pyramid, the current estimates are that health care affects about 10 percent of a person's health status.
Now, you wouldn't really know that from how we spend money in our health budget, in which 80 percent is going to health care, but it is only estimated to account for about that much of a person's health status.
Environmental factors and genetic factors are another 20 percent each. The lion's share seems to reside in the social and behavioral factors at the bottom here.
These include, of course, the many decisions that we all make every day that affect our health.
Now, if we look at this, the social and behavioral factors, again, that presents us with a lot of complexity. What are we talking about. There are so many factors here.
One of the things that has really intrigued me, looking at the research over the last 30 years, is that one of the most powerful factors to emerge in this whole are of social and behavioral factors is the perception of one's control over diverse issues in one's life.
That factor seems to be emerging as maybe the single-most powerful determinant of a person's health, more powerful than smoking cigarettes or not, or diet or exercise, et cetera, the perception of being able to control diverse issues in one's life.
That is a very different definition than most of us probably go by in our usual health silo. If we accept this type of factor as being very important, then it might mean that moving toward health is more of a matter of handling life events better.
That is very broad. I would suggest that, from my own experience, that is what I am hearing from people. When I saw this pyramid, the first time I saw it, it was on an Institute for the Future presentation by Wendy Everett.
I had an ah-hah experience. I thought, you know what, that is what thousands of people are telling us. What affects my health is handling my life issues, all the hundreds of things every day.
We are beginning to understand why this must be so, why this factor is emerging in the international research, no matter what society we go into. It is always emerging as an extremely powerful factor.