Personalized Health Care Initiative Workshop: "Understanding the Needs of Consumers in the Use of Genome-based Health Information Services". Consumer Interest in Health and Genomic Information

07/07/2008

Now, I have the ability to deliver a one-hour presentation in 25 minutes, which means that I will speak faster and faster as I watch Keisha (phonetic) tell me that my time is running out, so if you are translating today, get your lips in overdrive because this is going to be fast.

Let’s break into this. At Yankelovich we have been engaged in health and understanding consumer health for some time. And I just put this up here to give you a sense that this is not just coming from our back pocket, we really have spent a lot of time and energy to understand where the consumers heart and mind is relative to health. And we’re careful about the terminology we use because words like health care and health mean two very different things to the consumer. Wellness and well-being are two different things to the consumer, and so we have to be very careful with the words that we choose because the consumer is going to react in a very different way.

And please note that I’m referring to them as the consumer and not the patient. The day of the patient is gone; this is the day of the consumer. In fact, it’s the day of the health collaborator. And so we’re tracking this on a continuous basis and we want to make sure that you leave here today with a better insight of who these people are and what’s driving their (inaudible). I’m going to touch on a few key things. One, we want to introduce you to several different voices that exist in the marketplace. When it comes to consumer health we’re going to address maybe four of the dozen or so key health trends that we’ve been tracking. We want to then dive into a little bit of research that we did around personalized medicine and the consumers’ level of interest and understanding and engagement with genomic medicine. And then we’re going to get down to where the role of the physician might be in the future.

So the key thing that we want to emphasize here is that relevance is critical. We live in a day when we’re way beyond clutter in the marketplace. A good marketer, when it comes to clutter, adopts two strategies. I will speak loud and more frequently, which essentially just adds more clutter to the marketplace. We live in a time where the consumer (inaudible) active engagement we call marketing resistance. They’re taking active measures to avoid our communication. Health has been notorious for filling the airways with really lousy information from a consumer point of view. I spoke at a conference not long ago where one of my esteemed colleagues got up and was pointing fingers at the marketers and saying that these guys practice things like guerilla marketing and stealth marketing and viral marketing. And I got up afterward and I changed my comment. I said, “You’re right, Kelly (sp).” I said, “We do. In fact, the challenge with health is that we’re guilty of practicing confusing marketing and confounding marketing and conflicting marketing. And we’ve done a pretty good job of disengaging the consumer in much of what we have to say.” And so if we’re going to deal with this marketing resistance, we have to adopt some new strategies.

And now, just out of curiosity how many of you have signed up for the Do Not Call Registry? All righty then. Just a brief moment. You do know that market research is exempt from that, so when we call we’d appreciate your candid responses. What you’re really signed up for is not to avoid research, but what you’re signed up for is to avoid being called at dinnertime about something that you don’t care anything about. And so consumers today we understand that with TiVo and satellite radio and Do Not Call Registries and anti-spam legislation, we’re taking active measures to avoid the very things you’re trying to communicate with us. And so we have to make sure that in today’s marketplace we are more precise in defining who the consumer is and is not and more (inaudible) we deliver to them than we’ve ever been before. And further, we have to seek power to the consumer and change the rules of engagement so that the consumer begins to dictate how he or she plays in this space. And when it comes to health, we’re seeing that happen in a very real way.

Well, let me talk to you a little bit about relevance today and some of the voice of the consumer. We did a study in 2007 in 17 countries with tens of thousands of consumers. And what we were looking for is a way to take a very heterogeneous population and put them into homogenous buckets so that we could better understand how to engage the consumer in health and in health care. And so let me share with you six segments of the population.

Segment number one is a group we called “Leading the Way.” This is a group of people who get it. They organize their whole life around health. Now, they may have some chronic conditions, but they have a normal BMI, they exercise on a regular basis, they are avid information-seekers, they get their screenings as they should. These people organize their life around health.

Maybe you know one of these people because there are not very many of them in our country. In fact, they comprise about 10 percent of the population. They tend to be a little bit older, but the key thing with this group is that they have an inter-locus of control and they have a future orientation, which means you communicate into this group that the reason that you’d want to get genomic testing would be to help you avoid the future risk of disease; that would work for this group.

Group number two is a group that we call “In it for Fun.” This group is otherwise healthy, but not because health matters. They’re healthy and they exercise because they enjoy the competition. They want to look good, they want to feel good, they want to have the energy to compete. This is how they organize their lives. They do practice good healthy behaviors, but this is not a strong health mindset and orientation. And so if we’re going to reach out to them, delivering a message that avoids the future instances of health risk is probably not terribly important. We need to talk to them in terms of what it means to their social life and how that might impact their ability to compete and be aggressive in the marketplace in which they operate. So this group actually is good; we like them, but they’re not going to resonate very powerfully with health messages per sé.

The third group is the “Value Independence.” This is a fun group; we call them the do-it-yourselfers. This group is so tired of science and medicine creating confusion in their lives that they’ve determined that they can figure it out on their own. This is the do-it- yourself diet club. They mix and match until they find that works right for them. Unfortunately, they continue to get gain weight; they’ve not been very successful with their do-it-yourself technologies and have created a whole host of challenges for them and for their families. They don’t necessarily trust the voice of the physician. They think in many cases that medicine and science are overrated. And this is a group that’s turning more and more to alternative medicine and looking across the pond for new kinds of remedies and interventions that may prove to be a more positive intervention for them than traditional medicine. Very interesting group, hard to reach, they don’t want to hear your voice. This is a group that’s going to pay an awful lot of attention to social networks. These are bloggers-extraordinaire; they’re going all over the place looking for information from people other than the scientist because they don’t know that truth is found necessarily in science. I’ve been guilty of this -- well, I won't go into this story because I don’t have time, but another time. The next group is a group we called the “I Need a Plan.” We lovingly refer to them as the undisciplined. This is a group whose heart and mind know what to do but whose body simply will not obey. They know that they need to lose weight and they will start a diet, and then they will stop a diet. They will begin to exercise and then they will stop exercising. They need structure. They have a very extra low locus of control. They need the health care professional to intervene and help them to get with the plan and stick with it so that it can have success. These guys spend a lot of money on health; they are actually very well informed, but they are looking for partners who can help them start and finish something successfully over time. We like these people a lot because they are willing to engage. But this is a group that doesn’t need one more piece of information; they simply need help in applying the information in their life.

The next group is “Not Right Now.” We refer to these folks as disinterested. This is a group that is relatively healthy, but keep in mind, the disease is what happens to somebody else. They are a bit younger; they are generation invincible and are not likely to engage with health or health-related information at all. This is a group in the world of food where we get all excited about organic food and natural food; this is the group that when Hardees rolls out says 940 calorie breakfast burrito, they were in line four days a week because it tastes good. This is a group that’s going to do what they want because it helps them feel good about themselves.

This is a group that has Aunt Sally. You know Aunt Sally; she’s 97-years-old, she started smoking when she was 3, she drinks like crazy, but she is still ornery and full of vigor and we’re going to be just like Aunt Sally. This is a group that is very difficult to reach because they’re simply not listening to health information. They’re potentially a train wreck in the future because they are gaining weight and they are engaged in very unhealthy behaviors for the most part.

The last group is a troublesome group. This is a group that we call “Get Through the Day,” often referred to as given up. They have been afflicted with poor health for the majority of their life; nothing they’ve tried has produced a meaningful result. They are frustrated and basically have resigned themselves to poor health for the rest of their life. Unfortunately, they tend to be a very expensive consumer in the health space; they have many chronic conditions and they present themselves often in the most expensive health care delivery venues possible.

And so they’re a group that we have to pay a lot of attention to. This is the group that disease management companies focus a lot of energy and attention on. But we understand that this group will never get anywhere on their own; self-help tools will be completely unsuccessful. This is a group that’s very dependent upon professionals to help them experience any kind of benefit.

Now, I throw these six out very quickly. We have a ton of data behind each of these people. We’ve looked at 40 different chronic conditions, we’ve looked at weight management, smoking cessation, exercise, sleep management, stress management, all kinds of things. As we look at these kinds of people to understand how and where and why then engage or disengage in the health debate.

And what I want you to take away from this is that one message will not fit all, nor will one solution fit all. And we have to make sure that we’re reaching out to these people in a very targeted fashion if we hope to engage them in improving their overall health and wellness.

And when I speak of wellness, I want to get into some specific trends and some definitions. Number one, we’ve been measuring for the last four or five years, the evolving health mindset. What you need to be aware of and what you’re already probably very well aware of is that health today is a holistic view. It is a combination of mental, emotional, spiritual, and physical wellness. My concern with this trend right now is that the mental, emotional, and spiritual dimensions of wellness are actually masking the physical reality of disease. We asked people to tell us how many chronic diseases they suffer from, with which they’ve been diagnosed by a medical physician or professional, and what we’re finding is that people who have even more than three chronic diseases are listing their overall health as being good or very good. Now, why in the world is that? It’s because they have a positive outlook on life. It’s because they have a sense of purpose. It’s because they have people who love them. And besides, I don’t feel any different whether I take my hypertension medication or not. And so what we’re finding is that there’s a huge emphasis on that. In fact, we ask people, “What do you do to improve your health?” And what do they tell us? “Oh, I need to stop smoking. Need to lose weight. Need to exercise more. Need to eat better. Need to get a little more sleep.” Very physical in its orientation. When we ask them, “What’s the most important things you can do to maintain your health and wellness in the year to come?”

Number one on the list is to make sure I have good insurance. Right behind that is to practice good hygiene and personal cleanliness. We’re glad that we’re washing our hands more. What’s interesting is that exercise doesn’t even make the top ten. The diet barely cracked the top ten this year; it was number 12 in 2005.

The physical reality is not nearly as important to the consumer as the mental, emotional, and spiritual dimension. If we’re trying to change physical behavior, the take-home message is that we’ve got to couch it into the context of this mental, emotional, spiritual dimension or we will not cut through the clutter or the resistance in the marketplace. So keep that in mind. And, oh by the way, I am not a patient and I am not a disease. And I refuse to be defined that way. I am not a diabetic, I am not a hypertensive, I am not dyslipidemic; I am Steve.

And, oh, by the way, I’ve got these things that interfere with what I’m trying to accomplish in my life. If you can help me with that, that’s great. So keep that in mind as we’re engaging the consumer in today’s health marketplace, it is a holistic view. And we know that even those individuals who are mentally, emotionally, and spiritually engaged with health, the physical dimension factors in very nicely because physical health -- a crisis actually will disrupt or trump these other dimensions of health and wellness.

Number two, the thing to keep in mind, in terms of particularly genomic health and medicine and where we’re moving today is that home is becoming the center of health. We are living in the world of the Baby Boomer. Maybe you know one; they may be seated next to you. They are kind and nice; be gentle with them. One thing we know about Boomers is that we will never grow old. We refuse. We are redefining retirement, we are redefining age. And we are absolutely confident that we will never need to go into long-term care. In fact, we don’t want to. We’ve been in to long-term care before and we don’t like how it smells. And we don’t ever envision ourselves in that environment. And so what we’re seeing more and more is that the harm is becoming the center of health. I started a hospice company some time ago, and what was interesting is before World War II, people would pass away in their own home. Post-World War II, the single leading indicators where people would die was the availability of the hospital bed. Medicine changed. Well, I think it’s going to re-evolve, that the home is going to become a place where much of health is actually delivered. And so we’re watching that carefully. One of the reasons behind that is because we live in a world of the multi- generational caregiver. And perhaps you know them too, they tend to be female. They’re caring for an aging parent, they may have an ailing spouse, they may have children who are experiencing chronic disease earlier and earlier, but they have their hands full. And the market is recognizing that and is quickly coming to their aid and looking for everything they can do to empower that individual to maintain his or her own health and wellness, as well as to be good custodians of the health of others with whom they’ve been entrusted. So keep in mind that the home is going to be the center.

We know that more and more of health care will be delivered in the home. We’re seeing advances in telemedicine. The whole rise in in-home diagnostics is very impressive and will continue to be there because: one, it caters to the fundamental need of convenience; and that’s an important thing in the mind of the consumer.

Which leads me to the next thing, and that is the idea of diagnosed need. In a very cynical world, which we’ve trained the consumer to live in, we have determined that we can trust ourselves as much as we can trust anybody else. And so I want to be able to get a firsthand glimpse of my own symptoms. I’ll show you a slide here at some point if I get to it, that shows us where the consumer is going for health information and why they’re going there.

There’s a massive generational differential. The mature generation still is a bit of the Marcus Welby, M.D. generation where doctor knows best. The rising generation may go to the doctor as the third or fourth voice in the health continuum. That ought to cause a bit of fear, and it’s given how well some of the younger generation takes care of themselves. But nonetheless, we are looking for not just information but tools. And if I could just submit one thing, we don’t need probably another website with health information; we can find cancer information now I think on 200 million websites. Okay. It’s enormous. The consumer came to get a drink of water; we turn on the fire hydrant. I went from a period of complete disengagement to opening the internet and creating a floodgate that makes it virtually impossible for the consumer to differentiate what is truth and fiction. What the consumer needs is accurate information delivered through a credible source with passion over and over again. But more importantly, I need the tools that help me interpret that information in a personally relevant fashion and give me the power to actually do something with it. And our idea is not the BMI calculator. Anybody gone on to do the BMI calculator?

Anybody ever play with that? Only two honest people in the group. Yeah. What’s interesting is that you take it once and you’ll find out that you’re maybe not within the normal range; it’s amazing how fast you grow. You know, you’re now 6’, now you’re 6’4, and it feels a lot better in that range. That’s not going to cut it in today’s marketplace. The consumer needs to be endowed with tools that empower them to take action and to monitor that action. But it’s not just the tools, we need improved access to competent health care professionals who can help us interpret and manage that information and help us monitor our progress so that we really do achieve the (inaudible) that we’re seeking. And all of that needs to sit in the world of personal health accountability, a term that has not been introduced to the consumer but is coming very quickly. We’re tired of waiting for the federal government to drive change, we’re tired of waiting for the state government to drive change, we’re tired of waiting for the municipal government to drive change. The employer is now firmly engaged in this. I work with a lot of employers who have launched massive health and wellness programs to engage the consumers to change behavior, and they’re holding them accountable. And we may not like their tactics, but nonetheless it’s coming.

The next stage will be the individual themselves because employers will look for ways to lessen the liability of health care and responsibility for that.

The last piece is self invention, which is interesting. We’re figuring out new ways to invent who we are, what we’re all about, and there’s a lot of interesting medical information there that I won't touch on because I’ve already had my ten minute warning.

We’re going online because we wanted to research specific diseases and illness, but interestingly, we want to diagnose the symptoms that I have. Now again, a scary thing, but we’re going on and finding diseases that we never had before.

Let me get into specifically some of the research that we did around consumer genomic medicine. We did fundamentally qualitative information for the purpose of this to provide a snippet and insight into where the consumer’s head is. And what we find is that when we talk about genomics, that the consumer has some degree of familiarity, but very limited understanding. And so we say that the familiarity with genetic testing is pretty limited. And what we find is that we know a little bit about what it is, but we don’t necessarily know how it will be used and how we can apply it to our own health and wellness to our personal success. We are not aware that there are companies out there who actually are doing this.

We think this is being done by lots of other people and other institutions, and we don’t really have a clue about what the cost associated with genetic testing is. So again, a very good indication, those of you who are living in this space have probably done a lot more extensive research, but we know that this is the beginning days for genetic testing and the consumers are interested, their curiosity is certainly piqued, but they don’t know a lot about it and necessarily how to take action. What’s interesting is that they give us a lot of the right answers. You know, it’s a procedure used to find out the makeup of a person. It’s completing a series of tests to determine various things such as health concerns. They can articulate at least the surface level of what this is about, but again, don’t know a lot about how to use it.

Who is it for? Well, everyone, some say. Children, parents, and grandparents, people who are overweight, babies and children, there’s a whole range of potential users of this kind of information. Why do they get it? Some think it’s a preventative measure, some want to know how much time you have -- which I thought is a little bit of a morbid thought, but -- should tell you to use your time any differently. But they certainly see advances in medicine. When we ask where do they go to have it done, some are going to go to the doctor’s office, some to the hospital, some to the university hospital, some to the specialist, some are going overseas, and some in an approved facility. Not too many people are going to a DNA lab, and certainly people are not thinking about doing this in a third-party remote kind of fashion.

Am I willing to consider it? I’m interested, but I’ve got to admit, I’m a bit skeptical right now as the consumer. I don’t know -- really, if I got a negative result back I would probably still go talk to a physician anyway just to be sure. And so what we’re saying is that, yeah, I’d be interested in considering this thing if I have an increased element of risk. They want to know more about the information. The biggest concern is about accuracy. If I go and get this done, how do I know for sure that it’s me you’re talking about, particularly if I don’t necessarily agree with the results. They’re not as concerned about privacy; they assume that’s a given and would expect you to take good care of that information.

But they are skeptical of getting something that doesn’t come directly from a physician. And again, we talked earlier that the physician is my most trusted source of health information, (inaudible) accessible, and there may be a misplaced sense of trust there. But the law of proximity is very much alive when it comes to health. And consumers are going to trust that individual which is closest to them and whom they believe is objective and has their best interest at heart. The (inaudible) genetic testing means, we don’t know how it’s used. We hope that it’s going to give us a better understanding of my risk for disease, and that it will help provide a blueprint for me to take more poor health and to plan more effectively for my future, but I’m worried that I won't be able to understand what comes back to me. I don’t know that I will be free from any kind of discrimination if others find out that I may be predisposed to a certain type of condition. And so the hopes are there, the challenges are there, but they don’t weigh heavy on the mind of the consumer.

What does my doctor say? Well, again, we’ve mentioned this before. The doctor’s voice is very important. But again, the rising generation is turning more and more to the web. What’s amazing to me is we look at the consumer today, they are actually looking more and more to the blog for an empathetic ear and they are trusting people in these social networks as much if not more than their physician when it comes to certain types of conditions. They’re looking for approbation around a certain type of a new type of medical device or drug or intervention based on what other people in the market who are like them have to say, even if they’ve never met them before.

So it’s a great day for this. What we’re finding is that there’s a market out there that consumers are very interested, that they’re excited about the prospect, but it’s a great unknown and there’s still a lot of learning to be had for them to take advantage of genetic testing. The key is, give me the tools so that I can interpret the information that I get and take the appropriate kind of action. Again, many voices, many consumers. Not every one of them is going to jump on this and take advantage of it, and we have to recognize that and make sure that we’re targeting our efforts to communicate with them and engage in the process going forward. So if you want to know more about the consumer, we have a lot to say. Appreciate your time today, and we’ll turn it back. Am I on time? Good. [APPLAUSE]

DR. COWAN: I did not know you could talk that fast. I have a mint if your mouth is kind of on fire. Thank you so much. Those are our three presentations. I think you’ve probably all noticed the same thing I did, there was a great deal of convergence between the three. And sometimes when speakers get up and say so much of the same thing from their different perspectives, it can seem redundant, but I would counter that some things are worth redunding because that has set a tone that will then, I think, generate a conversation that we are going to try to bring out in the three panels.

So would Esther Dyson and your panel come on up? And we’ll go ahead and we’ll shift the panels out as I introduce them. And again, one more for our speakers. [APPLAUSE]

I hope that we have set a perception, and I would be surprised if many of you would not give many of the same points of view. You’re all professionals in this field from one aspect or another, that there is going to be a very different role of the consumer going forward in this particular aspect of medicine, others too certainly, but certainly this one; and that there’s going to have to be a different professional approach to genomics-based medicine than we have used in our traditional past.

I hope you have a feeling that we are early in the game and that we are going to try to spend the rest of our time looking through the eyes of the consumer. You can go ahead and sit there. Yeah, Yeah, yeah. We won't consider this a success -- this day a success -- I’m speaking for Greg and his team planning this -- we will consider the degree of success the richness of the conversation we have. And this is not just occupational therapy for us to (inaudible) away an afternoon. You know, the history books of the Manhattan Project have just recently come out. Enough time has gone by and the historians asked the scientists, “You invented a whole new field of science and then you invented practical applications to it and then you (inaudible) practical applications and you made them work. And you did all that in about 18 months; how in the world did you do that?” And they universally came back to the historians and said it was the discussion, it was the dialogue, it was the conversation. This -- I don’t think it’s too much of a stretch to make at least an analogy to the Manhattan Project. This is a huge sea change in medicine. We are at the verge of it, and you are the ones who will create it and you are the ones who will have the discussions and have the dialogues. The scientist said, you know, “We’d have a problem and we didn’t know what it meant. And then we would have these discussions and then there would be a solution, and nobody really claimed to know where it came from. It was all in the dialogue.” So I think this is a very important day.

We’re going to go into the panels now so I want to set the rules. So that’s the expectation -- that you’re engaged, we have a conversation. Here’s the rules. One, of course, a pesky rule, but no hitting. Well, no more than necessary. Second, I already asked, please participate. When you have a question, we have microphones that I don’t see, but we will. Raise your hand; we’ll get a microphone to you. It’s being recorded; we want to keep this, we want to save it. And get a microphone in your hand, tell us who you are and why you fight -- who you are, who you work for, and then ask the question. And I’ll help moderate the questions, or feel free to ask a particular panelist or the panel head.

Please be concise for the sake of time. We’re doing okay, but try to keep it in mind. We will -- and now, here’s my job. That’s a parking lot; this room is full of passionate people who have a lot of opinions about a lot of things. Some of them directly bear on other doings, some don’t; all are important and we want to capture everything, but we cannot take the discussions down every lane. And so I will be very arbitrary and capricious, I admit it right now, that if we’re going off in a direction or something seems irresolvable or for whatever reason, we’ll put things in parking lots. And the reason we’ll put it in the parking lot is so that we don’t lose it. We’re early in this process, we’re early in the development of this branch of science and medicine, and so nothing will be lost.

Are there any questions about the rules or the engagement? What we’re trying to do at this point where we are? I see no dissent. This panel -- I heard a dissent, what was that?

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