Talking About Health; Why Health Communication Matters

Who owns our genetic information?

119_1944a May 29, 2010

There has been some discussuion in the media about some pharmacies considering and reconsidering whether to offer genetic testing for purchasing. Why would we want to know about our genetic make-up when it comes to health? Why would anyone care if we paid money to purchase genetic testing without our doctor recommending it? How should we be talking about this issue?

Knowing information about our genetic might be one more way to promote our health. As we discuss across the entire book, Talking about health, this era of personalized medicine makes it possible to predict our risk for some conditions. However, as we have discussed in this blog before, knowing that we have genetic contributors to heart disease or that we do NOT have these contributors does not determine that we will or will not get heart disease.

So one reason that there may be concern about giving us access to genetic information through personal purchasing power is that having the test may give some of us a false sense of security and some of us a false sense of ‘doom’ about risk for disease. We may not use the information in ways intended. We may lose sight of the information being just one indicator of possible risk. Remembering that the era of personalized medicine is NOT about single genes predicting absolutely that one will get a disease is a critical part of realizing any benefit from knowing genetic information about our health.

Another often discussed issue is ‘who owns our genetic information?’ While this has been frequently discussed based on concerns about health insurance, we hear less discussion in the media about disclosure to family members. Once we know our genetic information, who should we share the information with in our families? After all, any information we have has some relationship to the biological make-up of other members of our biologically related kin. Should there be any responsibility for telling others about what we learn? Who decides?

We also hear no conversations about the fact that tests can be ‘wrong.’ How should results be treated? If we are found to have genetic predictors of increased risk for heart disease, for example, should we be tested again to be sure the results were accurate? Tested with the same test we purchased? If we did not have positive test results, should be be tested again to be sure that we don’t have the genes? What are the levels of accuracy associated with these tests? How much faith can we place in the results? Does our own human error enter into the equation?

So, yes, we need to be talking about these issues alongside our conversations about making genetic testing available to use in our local drug stores…..

How might communication–including access to the internet–relate to health disparities?

butterfly-picture May 19, 2010

Health disparities…differences in the health status of some of us compared to others–have many links to communication. We could place more emphasis on efforts to address some of these as part of health care reform.

One communication contributor to health disparities is a lack of equal access to health information. In particular, a digital divide has been identified as leading to differences in people’s awareness and understanding of ways to promote health and treatments for various diseases.

The digital divide has been discussed for years in terms of the affordability and availability of computers. This contributed to programs to increase access to computers in public schools and public libraries. Access to sources of health information is an important goal–one that may be enhanced by improving the nation’s infrastructure. I was struck by a colleague’s recent revelation on our way to a meeting in a rural community in Pennsylvania. He said that he seldom uses the internet from home. In his location, internet access still depends on the use of a dial-up modem. The slow and painful effort to get online just isn’t worth it. Libraries and schools in his area suffer from the same challenges.

The effort to reduce the digital divide by increasing access to online health resources is a good start but reminds me of the ‘just build it and they will come’ fallacy. Once we get on the computer, and we use our favorite search engines to look for health information, how do we decide whether the information is useful and relates to us? How do we understand the information? How do we harness resources to apply the information when we do understand it? That includes having sites for care and providers for care. …that includes having the ability to pay for care, time off to receive care, and transportation to sites for care.

Health disparities becomes a communication issue with many facets and many audiences to consider. If we approach health disparities as only an issue relating to access to information, we risk placing blame for continuing and/or growing disparities on people experiencing the disparities.

In a world where access to health information was supported by access to services, products, and care–our individual perceptions still may lead to disparities. Understanding related to the information and choices to apply the content depends on some knowledge of health terms and ability to translate the metaphors so often used to commmunicate in health information. Understanding also depends on the cultural and social lens through which we view the information. And on our own goals–including where we place responsibility for health.

Some of us assume more personal responsibility for our health than others. Some of us believe more in the role of family history and genetics than others. Some of us believe that the environment plays a greater role in our health than our own behavior. And some of us believe in a role for spirituality and religious faith. When we combine these into our health perspective, sometimes health disparities emerge… Can erasing a digital divide make a difference in these issues? Perhaps if we communicate about them directly, online and in other settings where we talk about health.

How will health care reform change how our country communicates about health?

118_1806 May 12, 2010

Watching my 5 year old granddaughter play youth soccer was great fun. Such energy. Such excitement. Such effort. Everyone running toward the ball and doing their best to get in a good kick. Sometimes in their enthusiasm, they lost sight of which goal they should be aiming for and may even accidentally kick the ball into the other team’s space. It’s a bit like health care reform in the U.S.

Keep ‘health’ in health communication… this is one of my mantras. I remind myself of it when thinking about the value of my own health communication research and the value of work that I review. It reminds me to consider, “how will the work make a difference in the health of someone?” Will it, for example, help someone to make a decision about which treatment to choose, which food to eat, how important rest and fun can be for health? Will it help someone to talk with family members about health history or to disclose to family members, doctors, or others important information about health status? Will it enable others to provide emotional or tangible social support to keep to a health regimen? …and so on.

So when I listen to conversation about health care reform, I am struck by several trends. First, there is so much fear and anger in the discourse. My mom, for example, will be having hip replacement surgery this summer. She is in her late 70s and on Medicare. She is convinced that her doctor will be paid very little for her surgery because of health care reform. She is also fearful that if she doesn’t act now, she may not be able to even find a doctor who will do the surgery soon…because the doctors won’t be paid well and won’t accept patients on Medicare.

We know quite a bit about fear appeals in communication. And sure enough, what I hear suggests to me that for many, the talk about health care reform and the actual reform itself does not make the efficacy of the actions clear. How will this reform be an effective response in both promoting ‘health’ of citizens and in limiting the runaway expenses? How might each one of us feel more confident or gain the ability to make decisions about our own health based on the reform? Made to feel fearful, many become angry and direct it toward the source.

Second, there has been too little direct translation of how health care reform will benefit health. Health illiteracy and science illiteracy often provide a way to explain our lack of understanding about health issues. Health insurance illiteracy is a whole new ball game. Most of us have some experience with car insurance or home owner insurance or life insurance, so we fall back on those as a way to understand health care insurance and health care reform. We need some help here. We need to know what ideas from other insurance contexts apply and what ideas don’t apply.

In some cases, if you get ticketed for speeding or running a red light, it shows up as higher premiums on your car insurance for awhile. Generally, we think that buying life insurance when we are younger rather than older will be less expensive. And if we fail to prune the tall tree near our home and it falls onto our roof, causing us to file a claim–some increase in our premium isn’t too surprising. So how do these ideas relate to health care reform? And if they don’t, why not?

Third, the optimistic outcome relating to health care reform and changes for how our country communicates about health is that we all become wiser about how politics relates to health… So we participate in the political process with our vote in elections and our voice in debate… not just in overcrowded town hall meetings but in the online forums available to us through access to our representatives where we ask questions and persist until we have answers… often and not just when something ‘big’ seems to be in the wind.

In short, we need to keep our eye on the ball and the goal, and make sure that those who represent us do the same…

What does the “food pyramid” tell us about health communication and ‘old science’, ‘new science’, ‘conflicting science’, and no science’?

143_07811 May 3, 2010

I cannot recall the first time I heard about the ‘food pyramid’ but it was decades ago. The United States Department of Agriculture [USDA] online site at http://www.mypyramid.gov/ provides an overview of the research in this area. Right under the image of the pyramid on the homepage, the follow sentence is bolded: “One size doesn’t fit all.” Over to the left of the pyramid, the heading, ‘Specific Audiences,’ includes ‘Preschoolers’, ‘Kids’, ‘Pregnant & Breastfeeding’, and ‘General Population’–giving us a sense of groups whose needs vary. Skimming through some of the information, it doesn’t take long to affirm one of the points that I make in my book, Talking about health…

When communicating about health, sometimes there is no science to guide prevention guidelines, diagnosis, or treatment. A quick review of the history of the food pyramid shows that even before vitamins and minerals had been discovered, the USDA provided dietary guidelines–the first time appearing in 1894. The first food pyramid was published in the 1960s. The goal is to help us know how to talk about food and nutrition without having to be an expert. So food is divided into groups and we gain a sense of how much of each group adds up to a more versus less healthy diet.

Often, what we know in any area relating to health is based on ‘old science’ that we learned in school several years or even decades ago–forgetting the simple fact that times change. New knowledge is generated everyday. If asked, we know this truth. The trick is to apply it when we are communicating about health. ‘New science’ may support the ‘old science’ or build on its core idea. ‘New science’ may also conflict with ‘old science’ creating doubt and indecision. It is helpful when talking about health to consider the ‘age’ of the science we are using and also the characteristics of the people the science is based on. As suggested by the latest food pyramid, when science takes into account the ‘age’ of and audience, the food pyramid looks slightly different for different groups…

Does wearing a mini-skirt affect female reproductive health?

copy-of-ij-women8-bridge April 25, 2010

Media reports often ask a provocative question to get our attention. Sorting through all the endless media clutter makes efforts to get our attention all the more challenging. And if it is a provocative question that got our attention in the first place, well–we’ve all played or heard of the old ‘telephone’ game where a statement that reaches the last person in the party usually is quite different from the statement made by the first person. Shorter. Interpreted through the lens of all the ‘hearers’/listeners along the way to the end… So, do we repeat the provocative question to others and even give it a bit of a twist to make it, well, even more provocative?

As best, I can tell, the question posed in the title of this post emerged from an article that appeared in a Russian news story. Here is the link to the story I found: http://english.pravda.ru/society/family/10-11-2009/110401-mini_skirt-0.

In a nutshell, the article–which has been translated into English so it may include some translation biases–asserts that “Mini-skirts should be worn sensibly.” The physician interviewed in the article says she herself has experience wearing min-skirts and has never experienced health problems as a result. She also goes on to note that mini-skirts can increase the risk for some conditions due to exposure to metal benches, stone steps, or cold weather. Near the end of the article, it is noted that women wearing min-skirts without wearing stockings should not sit down when using mass transportation in order to avoid infections. The article includes the statement that, “In rare cases such carelessness may lead to infertility.” So there is the seed.

In sum, as with using public toilets and any other situation in which we might encounter an infection, taking care to avoid infection is the best path to avoiding illness. In terms of talking about health, track down the source of surprising statements like the question posed here and see what the message might be that could promote our health…

What is the meaning of uncertainty when it comes to illness?

April 21, 2010

Communication and uncertainty go hand-in-hand. Many of our theories in communication focus on uncertainty as a reason to communicate. In these cases, we usually focus on communicating to reduce uncertainy. We talk about how we use cues from others–such as how they dress, the hair style they wear, the way that they gesture, and even how fast or slow they talk and their accent–to decide how much we are like another person. In these ways, we are using nonverbal information to reduce our uncertainty about talking with someone.

In already established relationships, we also experience uncertainty. Relational uncertainty may happen because we don’t know if our friend or family member is being ‘honest’ about whether they think we should take the job, go back to school, or in a million little day-to-day situations–like what to wear, what to eat, or what to do with our free time. We often try to reduce our uncertainty in these sitautions as well by communicating. ‘What do you want to do?’ ‘What are you doing to wear?’ ‘Do you think I should take this job?’ ‘What about the fact that we can’t sell the house right now?’ ‘They didn’t offer me any moving costs–can we afford it?’ So relational uncertainty emerges in a thousand different ways as part of having relationships. And it is a challenge to imagine how to balance the relationship needs and well, live our lives. So what happens when into the mix we introduce illness?

A diagnosis, whether it is terminal or not–as suggested by one of the participants in my last post–may spark the motivation to communicate. The diagnosis might be for a chronic condition such as heart disease, high blood pressure, high cholesterol, diabetes, or even HIV. It might be a broken leg or a sprained neck. Into each and every one of these and possibly thousands of other diagnoses enters uncertainty. “Illness uncertainty” is a big part of the uncertainy. But “relational uncertainty” is introduced into a diagnosis as well. To improve our communication about health, keeping both kinds of uncertainty in mind may help.

A diagnosis often leads us to want to reduce illness uncertainty about such things as ‘what is it,’ ‘what does it mean for my life,’ ‘how long will it last,’ ‘how will we treat it,’ and a host of other questions that may lead us to seek information to reduce our illness uncertainty. Sometimes, there will be no answers as we seek information, and so we have to “manage” our illness uncertainty by knowing that we have done what we could to answer our questions and perhaps by joining support groups online or in other ways putting ourselves in a position to keep up-to-date with any new information. What we don’t often think about is that in some situations, “increasing” our illness uncertainty may offer the most hope. As an emotion, hope let’s us look forward to a future that is a positive one and where we see ourselves able to achieve important goals. When we do not have certain information about our illness, that may provide a path toward hope if we frame it based on such comments as, “the doctor told me, ‘I don’t see any expiration date on you'”,–meaning that there is no answer to a question framed as, ‘how long do I have to live’.

In some of my past research, I have talked about the acute phase following a spinal cord injuury. During this phase, patients and families often are most reassured by communication that increases their uncertainty about the course of the diagnosis. Doctors not knowing whether a patient will walk again is a hopeful thing. At the same time that the patient and family experience hope related to increasing their illness uncertainty, they may experience sadness and fear and anger about a sense of increasing relational uncertainty. This is a case where friends and family may be very supportive in the beginning but seem to be less so over time. Communication may need to be more direct to reveal what is happening. If a friend asks, ‘what can I do for you?’ and the ansswer is always the same–‘nothing’–the friend may quit asking and quit coming around. There are many reasons that we don’t ask for help–and we can discuss those in the coming days–but if we remember that it may increase a friend’s uncertinaty about the relationship if we say ‘nothing’ and we obviously need help. And their lack of helping when we obviously need help may in turn increase our uncertainty about them. And both may contribute to illness uncertainty in negative ways–relating to a lack of tangible and emotional support–perhaps we can stop the spiral and communicate about our health and our relationship in more fruitful ways… not always to reduce uncertainty… but at least in ways to manage it.

What do you say to a loved one just diagnosed with terminal cancer?

122_0562 April 13, 2010

Maureen Keeley and Julie Yingling are authors of the award-winning book, Final conversations: Helping the living and dying talk to each other. Through interview data collected from some of us who have gone through the experience of knowing that a close relative has received a terminal diagnosis, Maureen and Julie provide a table of contents that introduce the important topics they address in the book. Among these–telling our loved one, “I love you.” While saying the words is important, giving clear messages that leave no doubt about the love that has been shared is emphasized in the authors’ summary of what interviewees told them. Telling a parent that she is loved, that you will do your best to live the kind of life she would be proud of, and that you are grateful for the time you had to to share together…these are messages that we want to say explicitly while we have time to do so.

Keeley and Yingling remind of us that a terminal diagnosis does not mean that your loved one is dead–yet. He or she probably wants to go on taking care of everyday business as long as possible. So when your loved one says that he wants to hear about your life, he really means it. There may not be a lot of opportunities left for you to tell him about the everyday and ordinary parts of living. What did you do at work? Who did you talke to? What did you eat when you went out to dinner last night? Where are you planning to go on vacation this year?

Simple joys…baking cookies for a loved one and eating them with a cup of herbal tea or coffee. Sitting near a window that looks onto a view that is a favorite one. One of my aunts that I felt very close to died from ovarian cancer. I remember her wanting to continue to do some work from the office…right up until she died. Her employer brought some of the bookkeeping to the house and she worked on it when she felt like it. We didn’t say to her, “Why are you spending your time that way?” She wanted to do it. That was enough. An uncle who died from lung cancer wanted to go on a camping trip. It meant getting a trailer that he could be comfortable in so that my aunt could take him on that final campout.

It also may be the time to talk through some things that have been avoided in the past. We don’t have just positive feelings, even about the relatives that we feel close to. A conflict long buried might be on our minds. An invitation to a loved one such as, “Do you want to talk about it?” may open the door to clear the air. We shouldn’t force the invitation, but provide a space for a conversation that many times will be a relief to the living and the dying.

The authors also emphasize how important it can be to say that a connection to a loved one lives on…even when they do not.

What is the message in ‘Jamie Oliver’s food revolution’?

141_0767 April 7, 2010

In the past couple of weeks, I have been watching the TV show that sparked some discussion on this blog a couple of weeks ago. After watching it so far [and with plans to continue to do so], I wanted to take note of a couple of points in his message that may be getting lost.

First, I heard Jamie say, “It is not about weight. …Thin people can be unhealthy, too.” This is a message about our health that gets lost in the clutter of messages about weight loss, dieting, obesity, and the fixation on what the scales say. Another time that I heard a similar message in a popular TV show was one year when the first dancer to be voted off ‘Dancing with the stars’ was a model. When she was rehearsing and then performing, she did not have the physical strength to pull herself up from some of the positions her partner placed her in. She was beautiful but as her expert dance partner said, “She is deceptively unfit.” So, yes, it is NOT about the weight. If we could follow more of the fitness model and less of the weight model, a healthy weight would likely be one of the outcomes. This is one of the great messages being communicated by Michelle Obama… to the kids of the U.S., get out and get up and get moving. To the rest of as adults who set role models for our youth and for our friends and family and coworkers, ditto… I talk about this in my book ‘Talking about health’ when I tell my own experience with sitting at the computer for too many hours over too many years and developing bone spurs in my neck–literally a stiff neck. I talk about how our generation of computer workers is not unlike the old factory and production line works in that we are in one position for too long and literally get stiff [and a little fat from it, too]. My physical therapist told me, ‘Never sit at the computer for more than 30 minutes without getting up and taking a stretching break for at least 2 minutes.’ He told me to set a timer and I do–at home and at the office. Get moving and make it fun!

A second message from Jamie Oliver’s show that we should hear and act on has to do with the how over processed our foods have become. We have given the food industry a profit motivation to come up with products for us to purchase that say on them such things as ‘fat free’ or ‘no sugar added.’ A long list of ingredients then includes a lot of long words that none of us recognize because they have mostly been created in food laboratories. I was shocked when Jamie showed a class of youngsters various vegetables and the kids could not name a ‘tomato’ or a ‘potato.’ They knew what french fries are but not what a potato looks like. Wow! A shout-out to those writing the ABC picture books. We need to put some vegetables in one. Perhaps an entire picture book devoted to vegetables. And then, of course, it would be great if we followed up by eating some of these vegetables. On this blog a couple of weeks ago when the Jamie Oliver show was brought up by a participant, it was noted that the cost of fresh vegetables is high. The cost of frozen vegetables may be a good substitute. One of the partipants in that discussion said that she could buy a bag of mixed frozen vegetables in the store brand for $1 and feed her family of four with it. I suspect that the store advertises that product with an emphasis on the cost rather than the nutrition. We need more communication about how to use frozen affordable vegetables when fresh ones are not an option.

Third, following on the heels of our food being over processed is a message about our foods containing too much salt. Most of us know that the ‘dead sea’ doesn’t support any life because the water is too salty. Well, when we get too much salt, our health doesn’t do well. That is one of the challenges of buying frozen vegetables. We still have to look at the product to see if anything has been added. Not all frozen vegetables are created ‘equal.’ Some of them have salt added. So it is not just the long scientific chemical names to watch out for when looking at nutrition labels and the ingredients of products, we need to watch out for ‘sodium’–salt that has been slipped into the ingredients. We can change the way products come to us. We change them with the votes of our dollars–our food purchasing dollars…

What is Dr. Besser telling us when he says, “There is no ‘evidence’ that herbs work for a cold”?

March 30, 2010

Spring is in the air and hopefully, you are not suffering from a spring cold. Or allergies. This morning on, “Good Morning America,” Dr. Besser talked about health information and social media–offering cautions about ‘advice’ that might appear on Facebook or other outlets, or health information sent via tweets.

After offering the general advice to be careful about what we believe, he focused on an example relating to the use of an herb to fight a cold. He made the statement I used in the title for this post: “There is no evidence that herbs work for a cold.” O.K. What’s wrong with that statement?

From a health communication perspective, this kind of comment is made often. If Dr. Besser or another source of the comment is someone we trust and believe to be an expert, we may accept the comment without further thought. We are usually not expert in health. Not surprisingly, we look to experts in health to guide our understanding.

But here is the problem I have with such statements. They do nothing to help us become more competent in making decisions for ourselves about health information. Dr. Besser could explain that there is no evidence and also explain what he means by evidence. For him, evidence = scientific data. Those numbers are usually the result of carefully conducted clinical trials. Those carefully conducted clinical trials cost — well a lot of money. And relatively few dollars are spent on research to study complementary and alternative medical practices–such as the use of herbs to fight colds.

The traditional approaches to health in the U.S. are prescription and over-the-counter drugs, and surgery, and the use of medical devices–many device relate to surgery and others that boost some of our ability to manage our own health. There are many expensive funded studies to evaluate the effects of these approaches. Based on the results, evidence is published and then disseminated to guide our doctors’ knowledge and our care.

We should realize that the research by pharmaceutical companies sometimes looks at herbs and works to understand how they might work to help or harm human health. Finding that an herb works may lead the drug company to produce synthetic versions of the herb and conduct research to see how they work. After all, we and our doctors do not live in the era of Dr. Quinn, Medicine Woman and cannot go into nearby woods to pick herbs to make teas or other potions to heal us. Medicine generally needs products that can be sold in mass quantities.

So, what does a lack of evidence mean when it comes to Dr. Besser’s statement? It means that no scientific clinical trials have shown the use of the ‘natural’ herb to be effective in reducing the effects of a cold.

Dr. Besser’s statment is not considering that your friend, your neighbor, or a thousand friends and neighbors on a social media site have used the herb and tell their stories about how it worked for them. It is not addressing the fact that we often trust the stories of others as ‘evidence.’ But it is not the same kind of evidence as science would provide. That is something he did not say. From a health communication perspective, we want to know this to help us better understand health information.

He also did not say whether the herb being promoted for a cold is one that drug companies may have or may be studying in some form. From a health communication perspective, we also want to know this to help us better understand health information…

What is math anxiety and what’s it got to do with my health?

117_1754 March 16, 2010

Math anxiety is the tendency to feel anxious at the thought of doing math. This feeling may happen when faced with making change, calculating a tip for the waiter or waitress, balancing a checking account, figuring out how much of an over the counter medicine to take, or adding up how many calories or other nutrients food contains. Not surprisingly, if we feel anxious about these everyday tasks, the prospect of trying to understand health statistics seems even more daunting and causes even greater anxiety.

Math anxiety causes people to avoid situations that might lead to the feeling. In other words, if math makes us feel anxious, we avoid numbers and statistics and any situation where we might have to face dealing with math. Of course, such avoidance means that we miss opportunities to practice math and succeed, which would reduce our anxiety and increase our confidence in our ability to do math.

This reality is particularly alarming when it comes to our health. To make informed decisions, we will probably have to consider some information that is presented as health statistics. It may be information about our risk for a disease, or it may be information about our benefit from a treatment. In either case, it is information that would help us make a more informed decision.

What is the solution? Don’t avoid math. Make the extra effort in whatever situation it might be to understand the statistics and practice the math. In the end, it will pay off. Make the extra effort to be sure your doctor knows you want to know the numbers and what they mean. Make the extra effort to be sure that your local school system is providing opportunities for students to practice math, reduce, their anxiety, increase their confidence in doing math, and improve their skills…