Personalized Health Care Initiative Workshop: "Understanding the Needs of Consumers in the Use of Genome-based Health Information Services". Welcome, Meeting Objectives and Overview

07/07/2008

The Secretary charged this Personalized Health Care Initiative with laying the groundwork here at the federal level, and then partnership with the private sector for a better future with a new kind of health care, truly individualized, personalized health care. We can all see the prospects of much more individualized care, much more effective medical therapies, earlier detection of disease, new powers of prediction and prevention of disease. We all want those things to happen, and rightly we’re quite anxious and a bit impatient for them to come across. Each of us in this room from where we sit know we are blazing a new trail, that’s partly why it’s so exciting, and we want to bring in that future as effectively as possible.

We’re here today to talk about an essential aspect of that future, namely, the interests and needs of consumers as this new realm of knowledge comes online.
This intersection of genomics and consumers has fundamental importance for personalized health care, especially because of new opportunities for consumer
engagement and for prevention that it presents. In recent months, we’ve seen that the traffic at this intersection between genomics and consumer engagement has become quite accelerated and there’s been a lot of public awareness about it. That’s going to continue as it should. So it’s great that we’re meeting today, that the Secretary’s Advisor Committee on Genetics, Health, and Society, SACGHS, is meeting today, and tomorrow also, and to focus on many of these related issues. And I’m glad to see many of the SACGHS members here.

As we stand here today at this intersection of consumers and genomic information, we’re actually looking at several different highways or roads that are converging right to this space where we are. The first one is genomic science. The completion of the Human Genome Project marked a huge scientific accomplishment, but as much as that was an accomplishment, that was just the beginning. That was just a starting point. And we’re all hearing about new genetic findings almost every week. As usual, new discoveries raise new questions, even as they’re providing new answers. And nothing about this field is standing still, and there’s no reason to think that things are going to slow down anytime soon. That’s a good thing. And as we should expect in any new field, how we communicate about these developments and what people hear is going to make a huge difference in whether consumers, providers, and payers will quickly and with confidence come to embrace the real potential that the advances in genomic health and personalized health care have the potential to provide.

The second highway that’s converging on us in this new and rapidly evolving -- the second highway that’s converging on us are the new and rapidly evolving
technologies that are being brought to (inaudible) in this area. That includes technologies that were nurtured by the Human Genome Project itself, like DNA microarrays. It also includes model information technologies, including both the rapid movement and exchange of information that we now take for granted on the web, as well as new kinds of information sharing and new powers of informatics. Unlike many advances in the past, these technologies are not just putting information into the hands of researchers. It’s not just specialists who are experiencing the information explosion, it’s all of us. That makes us ask new questions, questions that are changing all the time so we can better understand how the end-users will be able to use that information to its highest benefit in improving their health care and the public’s health care. So this brings us to the third major highway that’s converging here on this intersection -- the increased engagement of consumers themselves. Of course, in almost every field, web-savvy consumers are not waiting to be shown how the world is changing; they are leading the change in creative ways that could hardly have been imagined only a decade ago. This weekend I was up seeing my mom in New Jersey. She is 81-years-old, don’t tell her I told you to say that, she thinks that’s what the HIPPA Privacy Rule is about. Anyway, she’s 81, and her mom, my grandmother, was a classic Italian lady from the old country. When you said to her, “What’s the recipe for,” any given dish, you know, she would say -- you would say, “Well, how much of a particular ingredient,” you know, “how much bread crumbs should I put in this thing?” and her answer to every question no matter what you asked was, “This much.” She’d put out her hand and cup her hand, and that would be the answer to everything. She just knew and you’d have to be around her to get the information. But this weekend an interesting thing happened where -- as I was thinking about this talk -- is when I asked my mom for one of her recipes and, you know, my mom just said -- well, she started to tell us, then she said, “You know, it’s really much easier than that. Just go on the web, there’s a lot of great recipes available.” I thought, you know, this is a sea change. And of course, she’s also -- we talked this weekend about looking to the web to help her make some choices in health care about a drug benefit program that she’s thinking about changing. There are so many things that are changing, and my 81-year-old mom who, you know, not a great fan of technological changes, she knows about it and she’s excited about it. And she knows about changes that are being -- she has read up on possibilities for genomic health, and she asked questions about this and wonders where is it going and what does it mean? It’s very interesting that we’re having that conversation, and that’s a really good thing. In health care we’re encouraging consumers to take a more active role in their care. Their ability to do so is based in large part on the information they can access and use to make better health care choices. As that happens, all of us in this space owe them the support they need to make the best information and choices they can that are there before them.

So we all stand together at this busy intersection of genomics and consumer health today where these three roads converge -- advances in genomic health, new technologies that are being brought to bear in applying that science, new opportunities and access for consumers that take an active role in their own health care. That’s quite a busy intersection. And in this context, we need to find ways to encourage the traffic to move effectively and safely. That’s challenging, but we should expect these challenges whenever we get to new spaces like this.

As Greg mentioned, I was the Director of the Office for Civil Rights when the HIPPA Privacy Rule rolled out, and I was there for its initial implementation for a few years. There were two goals in that context that I remember we talked about. That -- I have some analogy that strike me as somewhat similar here. And we talked about -- and sometimes they were talked about as competing goals. There was the goal, of course, of protecting health information; that’s an essential goal. And at the same time, there was a goal of making sure that the information could still be both accessed and shared by individuals so that that information would be helpful to them. We didn’t want to -- we wanted to protect privacy and do it in a way that wouldn’t impede access to health care. And some -- a lot of folks talked about those as balancing between those two goals, but we recognized -- and I think all of you recognized that we needed to accomplish both of those goals. And it’s similar I think in some ways for the issues that we’re thinking about now where we have much more information, and we’ll have much more information available to all of us and especially to consumers.

In the personalized health care environment, we want to provide access to -- we want to help people be able to be good consumers of health care. We want to help them understand how they can improve their lives in so many different ways. And we want to do that in a way that’s accurate, rightly communicated, and rightly understood. These are challenges, but they are -- there is great potential in the improvements in individualized and public health that can occur if we accomplish both of those purposes.

Today we’re coming together to share our experience and perspectives on how in this intersection to put consumers first in personalized health care. We’re
all working in different areas, but do have goals in common for better health care and healthier population.

So let me just say a few words about the workshop. We’ve given it the catchy title, “Understanding the Needs of Consumers in the Use of Genome-based Health Care Information Services.” And we’ve got to work on the marketing of that, but that is a mouthful. The key word, though, is consumer and our key focus today. Our purpose here is to look at the ways that genomic information is going to reach consumers and then ask some basic questions. What are the opportunities here for consumers?

What are the cautions that need to be exercised? What tools do consumers need, and who can provide them? What are our different roles and how can we work together? I also want to keep our sights -- I hope that today all of you will help work to keep our sights set on the future. We were only a few years out from completion of the Human Genome Project, we’ve arrived at a time when some of the science and technology that was developed as the result of that project is being made available. But we are just at the beginning of the beginning. Among those represented among us today are some who are already
providing those services directly to consumers. Thank you for coming. We want to learn from you what we can so that we can all learn from your experience thus far. We want to learn from everyone in this room today so we can all be better at forward thinking in this arena. As the science and technology in this space continue to evolve rapidly, we need to ask ourselves what information will be available to consumers, in what ways and under what conditions can it help consumers achieve better health? And most of all, what can we do now to help achieve the best possible outcomes as these new capabilities and new opportunities come online? That’s the basic question for us today. In this area where consumers meet genomic information, and where new consumer knowledge is so important, what can we do now to make a better future? We have a half day, and that’s a tall order.

Mike Cowan is our facilitator. Mike is an Admiral and former Surgeon General of the Navy, so he’ll be using all his command skills to help us stay on course. We’ve already seen the good work you’ve done that way. Eric Topol from Scripps in San Diego will lead off with a view of what’s happening now and what we may expect in the future. Steve Bodhaine from the Yankelovich Public Opinion Survey Firm will provide us with a short portrait of consumer understanding an attributes in this space today. Then we’ll have our three panels with Q&A opportunities after each. And we’ll wind up with the discussion moderated by Mike Cowan, and Mike will be coming up here in a minute or so to introduce our first speaker.

Let me thank you all again for coming today. The Secretary and the Department share with you a strong interest and desire to see the day when consumers can confidently rely on every increasing array of genomic and technological advances to target preventative therapies, prevention therapies, and so much more. Thank you very much. [Applause]

DR. COWAN: Well this is an exciting afternoon. Again, thank you for being here. My role today will be kind of the traffic cop. Those of you who have -- and everybody’s looked at the schedule and you see we have an exciting topic, we have exciting speakers and panels -- and the audience -- I’ve looked through the credentials of the people who have come here to represent the entire professional spectrum of people who are interested in this topic. And there’s another 20 or more people who have joined us virtually, and we will work to get them into the discussion. So we have a big subject, lots of ramifications, lots of people with passionate interest in it. This is all good news, and Greg Downing, who was the introducer, the gentleman in the yellow tie; Dr. Downing is the Director of the Personalized Health Care Initiative. I don’t think I mentioned your name Greg, but he’s the leader of this whole effort today and has been working to put this all together. So I will try to keep us on track. We’ve all been to conferences and know that there are riffs on the theme on that we can take, and we shall. And I will talk some more about the ground rules and how we will handle that in a moment, but what I’d like to do is get us started right into the meat of things after I make just a couple of quick announcements.

There are bathrooms that are real close to us, but they’re not for us. They are under restoration and so restrooms are down the hall, down the elevators, bottom of the elevators take a left, and they’re sort of tucked up under the elevators.

If you have cell phones and have not turned them off or put them on (inaudible) already, would you do so? Everybody’s done so? Oops. I’ll do mine in a minute. And I think that’s all of the housekeeping we need right now. We have two exciting sort of keynote talks to get out our thinking juices flowing, and then we will go into a first panel followed by a break, and two following panels. And I get the privilege of introducing Dr. Eric Topol. He’s the Director at the Scripps Translational Science Institute. He has about ten other titles there, but if we read his titles he wouldn’t have as much speaking time and we’d be asking him to shorten it up. He is also the Dean of the Scripps School of Medicine.

Anybody know a graduate of the Scripps School of Medicine? Nobody’s graduated there yet. It’s a new medical school. Eric is in the process of putting it together, and he’s putting it together with the future of genomics as being an integral part of the future of medicine. I think it’s a very exciting project and I think you planned on saying a word about. So with no further -- Eric, please. [Applause]

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