Talking About Health; Why Health Communication Matters

Health communication and IOM paper findings about how to discuss medical evidence

September 26, 2012

I have talked often about the importance of evidence to guide our informed decisions about health. A new paper from the Institute of Medicine discusses how to talk about medical evidence [see http://www.iom.edu/Global/Perspectives/2012/~/media/Files/Perspectives-Files/2012/Discussion-Papers/VSRT-Evidence.pdf].

One of the interesting issues considered addresses ways that language relates to patient confidence about evidence and health care. 1,068 US adults were surveyed to answer this question: 71% were White, 48% male, 46% 55 years of age and older, 55% rated themselves as in ‘very good’ or ‘excellent’ health, 62% were not living with any chronic condition, 88% had health insurance, and 36% usually or always bring a list of questions with them to ask their doctors.

The summary of findings is in Table 1. ‘What is proven to work best’ was found to be the phrase leading to the greatest level of confidence, 79%–in the evidence used for their health care.

I wonder, given that so many come prepared to ask questions, if the participants would ask any questions about the evidence. Things like ‘is the evidence based on someone my age, my biological sex, or my race/ethcnity?’

I wonder, too, about the levels of education for this group. IOM has convened panels to write reports about health illiteracy in this nation. What does ‘evidence’ mean to the large percentage of adults in the US who are health illiterate? What does ‘evidence’ mean to this group of mostly white, mostly insured, and very healthy personal advocates [they ask a lot of questions on their own behalf] participants?

Hopefully, the responses do not become scripts for medical interview education.

The paper also makes ‘evident’ that US health consumers want their personal goals to take a priority in conversations about their health with health professionals. So, we need to understand what goals the patient has about the ‘evidence’ being used to guide decisions. Is it their goal to understand more about what makes up medical evidence? If so, I am not ‘confident’ that this advances that aim.

What do you think about tobacco settlement dollars?

March1, 2011

It is a fascinating history filling volumes of research journals and books and ledgers… The tobacco settlement… It came to my attention again today as I was reading about Pennsylvania’s adult basic health insurance program.

Mostly, in the past several days, I’ve heard sound bites about the program shutting down and leaving Pennsylvanians uninsured. The shutdown in the stories I’ve heard seemed to be linked to state budgets and all that is going on there. Today, I had a moment to explore more about these soundbites and learned that…the program began under Governor Tom Ridge who used the State’s tobacco settlement funds [http://onevoicetulsa.com/index.php?ht=display/ContentDetails/i/4424680].

The tobacco settlement was designed to provide states with funds to address increased health care costs related to tobacco use…smoking. This was to include cessation programs as well [http://www.tobaccofreekids.org/what_we_do/state_local/tobacco_settlement/].

One might ask how we get from the the latter to the former? We all share higher health care costs linked to smoking…whether or not we smoke or have smoked. So perhaps it was a creative and even equitable program that the former governor introduced…

Is there really any reason to believe that communication about health causes discrimination?

January 19, 2011

Yes. And we are hearing about it again as the Congress considers health care reform…yet again.

Insurance discrimination… Parents are worried once more as Congress talks about health care reform and it seems as if some conditions might not be eligible for care. It is hard to understand why a conditon that someone is born with might be ruled out for care, while a condition that has direct links to our personal behavior would be covered… We don’t want to find ourselves playing a ‘blame’ game… but resources are limited. We have somepersonal responsibility. Society has some responsibility. We have to consider both.

Employment discrimination… A subtle thing can happen, subtle because it is hidden from view. As costs for health care increase, as medical knowledge grows, will there be some conditions that rule us out of consideration for employment?? Will some genetic conditions linked to risk from some diseases lead some employers to require testing for those genes? What do the innovators of ’23 and me’ think about these issues?

http://www.youtube.com/watch?v=F7UHBBHhoj0&feature=related

Social discrimination. We have years of evidence to support that naming or labeling health conditions can lead to stigmatizing behavior toward people who have been labeled…avoidance and more.

Reproductive discrimination… Yes. How we talk about health can cause discrimination…

How do we talk about a right to health care in the U.S.?

October 14, 2010

It was little more than a decade after the Constitution was adopted when the U.S. Congress debated a role for the government in providing health care for some U.S. citizens. It was argued that when merchant seamen, who acted on behalf of the welfare of all U.S. citizens, became ill and/or disabled, it was only “just” to pay for their health care. In accord with this premise, Congress passed an act to provide for merchant seamen’s medical care in 1798. Congress used the authority of Article I, Section 8 of the U.S. Constitution to support this policy. It empowers the federal government to regulate commerce with foreign nations and to tax for the general welfare as a means to that end.

So–the health and well-being of individual seamen was not the argument used to support a role for government. The need for a government role in health and health care resided in a focus on commerce. If the seamen could not do their jobs, it could harm the nation’s commerce. Other early federal debates led to the provision of health care to the armed forces. It was argued that a healthy army and navy were necessary for national defense. Then, in the first two decades of the 20th century, middle class progressives realized that the American industrial society’s working-class citizens suffered ill health and injury, affecting their ability to work–harming the nation’s productivity levels.

Workplaces were often unsafe, causing injury to workers and their ability to work. In recognition of these facts, a number of economists formed the American Association for Labor Legislation (AALL) in 1905 for the purpose of studying labor conditions and labor legislation. The group advocated for health reforms in industry and sought compulsory health insurance. Initial efforts to argue the merits of such legislation focused on workmen’s compensation. This strategy aimed to provide access to care for workers injured on the job. Woodrow Wilson joined the AALL. He included their social insurance plank in the 1912 Progressive party’s platform. In 1915, they published a model health insurance bill in legislative language to be considered by State legislatures, with California, Massachusetts, and New Jersey supporting the proposal out of the 12 States that discussed it.

As debate continued within the States, so did opposition to a proposal for government health insurance. World War I produced the War Risk Insurance Act that established a comprehensive system of benefits for servicemen and their dependents. A broader policy was defeated, however, with AALL leaders naively assuming that such reform would be viewed as beneficial to all.

Once access to health care is argued around the role of commerce, the challenge becomes how to separate whose ill health and injury would not fit within that realm. If each citizen who works–and this includes those who work inside the home to enable others to work outside the home–contributes to the economy, then the argument appears to support the need to guarantee health care for all. Children will be the next generation of ‘workers’, so their care should be supported as well.

The Congressional Committee on Costs of Medical Care in 1927 proposed Health Maintenance Organizations [HMOs] as a strategy aimed to provide affordable health care to all citizens. A minority report written by doctors and adopted by the American Medical Association took the position that HMOs would hurt the quality of health care. As a result, the Committee’s recommendation was not seriously considered. Congress, however, initiated a program to cover its own members’ health care. And so, talk about a right to health care in the U.S. a century ago…not very much different from talk about a right to health care in the U.S. today.

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 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 can maps tell us about health?

115_04112

March 13, 2010

A map is a wonderful example of a visual health communication tool that tells us so much with so little text. The notion that “one picture is worth a thousand words” more than applies. Mike Mackert discusses a new resource, a map, on his health communication research blog [http://blog.healthcommunicationresearch.com/2010/03/new-interactive-tobacco-map.html]. If you click on his link to the overall map resource, you can use a slide bar on the right side to display which states have passed which laws and policies relating to tobacco and smoking. A great example of giving citizens and elected representatives points for comparison. From a communication perspective, several thoughts come to mind.

First, this is a great way to illustrate a role for visual literacy as part of health literacy. In terms of our understanding, when we have a visual image to tell us something, it saves us a step in our thinking and understanding. We don’t “think” in words. For example, when I say “snow,” you “think” an image — something likely related to your own experience with snow. You do not think “s”–“n”–“o”–“w” and try to get meaning from thinking and forming these letters in your head. When you see a picture of snow, there is an instant connection to your mental picture.

Second, this process I have just described assumes, of course, that you have experience with snow to draw on in forming a mental picture. I am reminded of a test that my daughter was given in order to start public school “early.’ Her birthday is September 14th. She thus missed the September 1 cutoff date. We requested that she be tested to start, as we felt that she was more than ready. The test validated our opinion. It also showed that she could not give a name to a picture of a “snow shovel.” She was born in Tucson, Arizona, and she had never seen snow let alone a snow shovel. So, she could not make a match in memory between the picture and a name or label for it.

So, third, any visual form used to communicate–and there are many in health communication, ranging from photos to bar graphs to pie charts to maps and more–depends on a user’s ability to connect experience and skill to an intended meaning. In the case of the map Dr. Mackert identifies, it aids the user who moves a mouse over the geography by having the names of different states ‘pop-up’ to help a user who may not remember the name or location of any given state. It offers a series of folder options across the top for a user to click on, so that there is not too much information presented in any one map. It does rely on a number of colors in the maps that are somewhat close on a color wheel and might be difficult for some users to distinguish. It also identifies two sources of the information at the bottom of the map that are not easily navigated to gain insights about the method used to gather the information. It is, however, what policymakers often seek to help them wade through all the mounds of information related to decision-making.

Maps can, therefore, tell us what is happening in one location as compared to another, giving us a location hypothesis or explanation for health and health care…

What is “public health” anyway?

copy-of-p3061598 March 1, 2010

As children begin to know about roles and jobs, some will say, “I want to be a doctor.” Their parents buy them a ‘doctor’ kit to play with, and they practice being a doctor. I never hear a child say, “I want to work in public health.” Why is that? What’s wrong with this picture?

Public health isn’t part of the usual high school curriculum, so we don’t get an introduction to what a career in public health might look like. When health education is taught in high school, the course doesn’t introduce students to the public health system. And so, not surprisingly, few of us know what public health is or what the public health system does.

Public health often treats health as a public good. A public good is something for which the benefits for one of us cannot be separated from the benfits for ‘all’ of us. When I get a flu shot, I am supposed to benefit by not getting the flu. But others benefit because they do not get exposed to the flu from me.

So monies spent to inspect restaurants or public pools benefit every member of the public who eats at the restaurants or uses the pools, not just one of them. Monies spent for newborn screening programs benefit all of us because we identify conditions at early stages when prevention or care may limit the harm, and all of us benefit by having a friend or neighbor who can be a healthier and more productive citizen.

School vaccines. Programs for reproductive health. Collection of data about births and deaths–vital statistics that can show patterns and be used to suggest how to improve birth outcomes and decrease deaths. Cancer registries. Programs to prevent disease and accidents. All of these and more are prt of public health’s efforts to promote the public good.

Is the public good “good” for me? Often it is. Sometimes, it may not be.

There are limits to what vaccines I want to be used as gatekeepers to my employment. But there are even more limits to what genetic tests I want to be used as gatekeepers to my free choice to pursue life paths. So the first step is to become aware of what public health means what public does. Then we can advance agendas relating to support for public health and guidelines about where to draw the line in the name of promoting the public’s health.

Should we ask our doctors about antibiotics?

138_07301 February 27, 2010

On the ABC evening news this past week, Dr. Besser advised the audience, “Do not ask your doctor for antibiotics.” He provided the evidence to support the claim that asking for antibiotics greatly increases the chances that a doctor will prescribe antibiotics to a patient. He went on to explain that antibiotics are designed to treat bacteria. They do not treat a virus.

I would reframe this conversation. From the doctor’s side, if a patient asks for antibiotics to treat a virus, this seems like a great opportunity for the doctor to explain, “Antibiotics do not work to treat a virus, and your cold is caused by a virus.”

The advantages of this approach include the chance to improve a patient’s health literacy. We can increase our own understanding about health if our doctors take the opportunity to use these teachable moments to ‘teach’ us.

Another advantage is that we feel able to ask a question about our treatment without concern that our doctor might prescribe something unncessary. One likely unintended of Dr. Besser’s advice to not ask for an antibiotic is that it may lead us to wonder, ‘how often would a doctor prescribe something to me just because I asked for it?’

The medical research supports the conclusion that in the U.S., direct-to-consumer advertising leads patients to ask for tests and prescriptions that increases the likelihood that a doctor will order the tests and/or prescribe the medication. So, like in the case of antibiotics, when a patient asks — a doctor is more likely to prescribe.

But is this always a bad thing? We have decades of research to support the conclusion that the time demands on a doctor and the ever growing body of research about available therapies for various conditions = less chance to consider all options in each situation. To participate in our care, we should ask about treatments we may know about. Just asking may prompt the doctor to consider a path that wasn’t the one being considered. Just because it is considered doesn’t mean it should be selected. Sometimes, however, the doctor might judge it to be a ‘good idea.’

If each time a patient asks a doctor for treatment that is not a good match to the health condition, a doctor feels compelled to prescribe the treatment, it will lead to further waste in the health care system. We know that a doctor is not likely to follow the path a patient suggests if the doctor believes it will be harmful…at least, in the short term. But with antiobiotics as a case to illustrate, we want our doctors to think about our well-being in the long term. And if our request doesn’t make sense, take a minute to tell us why it doesn’t.

This approach means that doctors and patients can keep talking, and that their communication might benefit health in the short term and the long term, and the cost of health care as well.