Tag: health information

Networking the New Normal: Confronting Illness through Social Media

GUEST BLOGGER: Terri Beth Miller, PhD

This is not how you expected life to be. You’re run down. You’re hurting. You’re physically and emotionally drained. And it feels as though those closest to you are a million miles away, as though you’ve suddenly found yourself stranded on a desert island with no hope of rescue.

This is what it can feel like when you are confronting illness, when a diagnosis suddenly transports you to a new world you never wanted to visit, let alone permanently inhabit.

The truth is that illness, whether physical or psychological, chronic or acute, can be one of the most frightening, disorienting, and isolating experiences a person can face. And yet, if we live long enough, we will all confront this experience. After all, ain’t none of us getting out of this life alive.

But diagnosis doesn’t have to mean disaster. Our 21st century world offers resources once unimaginable to those seeking health information and support. Few are more potent than the vast social media networks available to connect people in the most far-flung corners of the globe with the simple click of a button.

This seemingly limitless connection can be an infinite comfort for those who are suffering from illness, allowing survivors to reach out to fellow survivors, who often can understand illness in a way that those who haven’t experienced it simply cannot. After all, family and friends may empathize. They certainly can provide a love and comfort that the virtual world cannot replace. But there is a special and necessary connection shared by those have felt the gnawing at the bones, the torment of the mind—by those who have the visceral, intimate experience of real, bloody, hand-to-hand combat with illness. This is the connection that social media can offer to those suffering from illness, a means to overcome the isolation that can cut as deeply as sickness itself.

In addition to the opportunity to connect with fellow survivors, social media is an exceptional outlet for sharing health information and resources, from exploring treatment options to connecting with care-providers. After all, an informed patient is an empowered patient. Because those who are suffering from ill health often feel a tremendous lack of control and a vast feeling of uncertainty for the future, this access to knowledge can restore the sense of self-determination and understanding that survivors knew before diagnosis. These resources can restore some normalcy, or at least something of a return of the survivor’s sense of self.

Nevertheless, extreme caution must be practiced. We are perhaps never more vulnerable than when we are battling illness, and unfortunately those who would prey on the hopes and fears of the desperate are legion. So while it is healthy—and, indeed, essential—to seek out all the knowledge and resources possible when battling illness, it is equally essential to be wary of promises that are simply too good to be true. Vet the company you keep and the treasures you store up in the virtual world just as you do in the physical one.  Avail yourself of the immense resources available to you online as you wage your battle with sickness. But do so from a position of strength and discernment. This is your body. This is your mind. This is your spirit and your life. Harness the best and highest powers of social media. There is tremendous solace, solidarity, and support to be found online for those battling illness, but only for those who use it wisely.

For more information on the most beneficial mental health online resources, please visit: https://openforest.net/4-best-mental-health-bloggers-period/

Terri Beth Miller completed a PhD in English Language and Literature at the University of Virginia. She has taught writing and literature courses for more than a decade and is a regular contributor to the http://openforest.net mental health self-help portal. View her profile on LinkedIn at https://www.linkedin.com/in/drterribethmiller.

Being Under a Watchful Eye Has Potential to Increase Independence

High-tech mHealth technology is not just for the trendy young population of today. In fact, senior citizens were one of the first groups to utilize an early form of mHealth in the 1980s and 1990s. Remember “Help! I’ve fallen and I can’t get up!”? Despite the notoriously corny advertising, these remote alert systems were years ahead of their time and just the beginning of personal health monitoring devices.

care in the home

Currently research is being conducted at University of Texas at Arlington into more advanced technology that can monitor gait and balance through floor sensors to assess fall risk, skin color through bathroom mirror sensors to detect illness and disease, and heart rate through various sensors in mirrors and beds to identify a variety of health complications. To hear the whole story, listen to NPR’s report, Live-In Laboratory May Help Older Adults Live Independently Longer. Also learn about another research group at the University of Missouri that is testing a more cost-effective monitoring system.

Essentially this technology is aiming to detect small changes in health data to make important predictions about seniors’ health risks and then take precautionary or preventive measures to mitigate these risks. It has the potential to provide piece of mind for not just seniors, but their children and healthcare providers too. In addition, the massive amount of detailed data can help scientists and researchers better understand aging and the development of many diseases, illnesses, and causes for injury.

Would you find comfort in having a parent in such a “Live-In Lab?” Would you personally be comfortable being monitored 24 hours a day? Is there a balance or tradeoff between science, safety, and privacy?

Image Sources: Flickr & Flickr

Wellness Wednesdays: What is Health Behavior?

Defining ‘Health Behavior’

Today, we are going to begin exploring the simplified model of health behavior I introduced in last week’s post. However, I would like to start by clarifying just what ‘health behaviors’ are. Over the years, I have found David Gochman’s definition to be one of the most comprehensive. Gochman (1997) defined health behavior as ‘those personal attributes such as beliefs, expectations, motives, values, perceptions, and other cognitive elements; personality characteristics, including affective and emotional states and traits; and overt behavioral patterns, actions and habits that related to health maintenance, to health restoration, and to health improvement.’


Knowledge: Not Just Facts

‘Knowledge’ is the first component of our Simplified Theory (as a reminder, the other three components are ‘tools’, ‘skills’, and ‘materials’). We will break knowledge into two basic elements: factual information and attitudes/beliefs. Without drifting into a lengthy discussion of metaphysics, there are many academics who have proposed that there is not one reality, but many (I know, I know…it sounds pretty ‘out there’ – just bear with me). In some ways, they are right.


Is Perception Reality?

Individuals dictate their reality in a very concrete way, based on they perceive the world. This ‘subjective’ reality appears objective to the individual, and also has external consequences – but does that make it more ‘real’? To be clear, there is only one reality – my point is that there are infinite ways to perceive that reality, and how a given individual will carry out that perceptual process is determined by the innumerable experiences that person has had.


Necessary, but Not Sufficient

We live in the ‘Information Age’ – enjoying unprecedented access to factual information than ever before in human history. However, this access doesn’t seem to have translated to better health. In fact, health in the United States has been declining for decades, and now, for the first time ever, children born today may actually live shorter lives than their parents. This is unacceptable. But how do we fix it?


Changing Attitudes

Providing information is only the first step to promoting behavioral change. The bigger challenge is changing the attitudes and beliefs that prevent that information from being used to influence behavior and affect health. Next week, we’ll talk about some strategies by which that can be accomplished, on both the individual and organizational level.


Can you think of an example in your life where there is a disconnect between ‘information’ and ‘attitudes’? Have your beliefs about a behavior ever prevented you from trying it, even though you ‘knew’ it would be good for you? Please help to continue this conversation by adding your comments below!

Everyone’s a Health Expert

These days, it’s not uncommon for people to connect via a variety of media and communication channels – websites, blogs, Facebook, Tumblr, Google+, Instagram – tools that allow people to not only network with each other, but spread ideas and exchange information. This system of “user-generated content” is a progressive way for people to make connections and learn – but what happens when the content is all a sham?


Vani Hari, the Food Babe blogger (photo from FoodBabe.com)

Recently, two “wellness gurus” have come under scrutiny: Vani Hari, the Food Babe blogger, and Belle Gibson, the blogger who claimed to have cured her terminal brain cancer through diet changes and other controversial alternative therapies (but later admitted she never had cancer). Both young, beautiful health advocates have hundreds of thousands of followers on social media, as well as cookbooks and iPhone apps. Another characteristic the two have in common: neither has any form of education nor formal training in nutrition, health, or science; however, they’re more than willing to share their firm opinions and recommendations on food and health as if founded in evidence.

At what point did it become acceptable to act as an expert in a field you’re completely unqualified for? Similarly, at what point did it become acceptable for the general public to trust and follow these “advocates” as if they are equally knowledgeable as credentialed medical and nutrition professionals? Not only do these “celebrities” of health lessen the work of true professionals, but it also makes it far more challenging for the public to trust any source of information or respect the true relationships between diet and disease, which is still being rigorously researched.

While it is essential to have the right to communicate one’s opinions and ideas, I urge everyone to observe the credentials (or lack thereof) from those touting the next best magic-bullet cure or diet. Those of us working hard towards (or with) degrees from reputable institutions deserve respect for what we attempt to do, and the public deserves access to honest and reliable information without having to wade through the chaos of fraudulent or exaggerated claims.


Photo sources:

Featured image from the upcoming Australian Women’s Weekly article featuring Belle Gibson, via The Washington Post

Vani Hari on The Food Babe

Top 100 List: Health Websites You Can Trust

Over the past ten years, there has been an explosion in Internet access and use in the United States. With the increasing availability of the Internet, it is true that the Internet has got increased attention as a source of consumer health information. Especially, when Web browsers started providing easy access to the World Wide Web in the 1990s, early adopters – both searchers and content managers – recognized the power of the new medium for posting health information. With the launch of the MedlinePlus website in October 1998, Donald Lindberg, a director of the National Library of Medicine, mentioned, “carefully used, the Internet offers the public a wonderful opportunity for assessing timely and critical health information”. Considering these days, however, there are numerous health information resources online. Then, how could we distinguish between reliable and unreliable resources?

Here is a good tip for your question! The Medical Library Association (MLA)’s Consumer and patient health information section (CAPHIS) announced a top 100 list of health websites that consumers can trust. The list consists of ten specified categories including General Health, Men’s & Women’s Health, Parenting and Kids, Senior Health, Drug Information Resources, etc. The purpose of the list is not only to provide CAPHIS members and other librarians with a resource to utilize in their daily practice and teaching, but also to have a limited number of resources that meet the quality criteria for currency, credibility, content, and audience. I expect this would be also helpful for health communicators like us and even consumers.

One thing we need to remember is that the suggested resources are not intended to be a substitute for professional medical advice, diagnosis, or treatment. We should always seek the advice of physicians or other qualified health professionals with any questions we may have regarding a medical condition.

Image source: Nottoway County Public Library (http://www.nottlib.org/)

Spotlight: Dr. Barbara Wildemuth

The Interdisciplinary Health Communication (IHC) program at UNC-Chapel Hill wouldn’t be what it is today without endeavors from a number of researchers. It would be difficult to say without Dr. Barbara Wildemuth, an associate dean of the School of Information and Library Science (SILS), one of the founders of the program.

Dr. Wildemuth is definitely one of the authoritative figures in the field of health information. Her lengthy and prestigious CV also illustrates her one of the role models of interdisciplinary studies. Dr. Wildemuth earned her master degree of library science at the University of Illinois and another master of educational statistics and measurement at the Rutgers University. After that, she completed her doctoral degrees at Drexel University majoring information studies in 1989. Her professional experiences as a professor here at UNC have been almost 25 years. Specifically, her teaching includes in various aspects of research methods, user interface design, and information ethics. Furthermore, Dr. Wildemuth has been named Outstanding Teacher of the Year at the SILS in 2000.

Not only is she an excellent teacher, but she is a highly effective researcher and methodologist. In terms of her research fields, Dr. Wildemuth has been focusing on people’s use of information and information technologies, including information related to their health. Her most recent research projects have included studies of people’s needs and interest in personal health records; medical students’ use of a factual database in microbiology; and a computerized presentation of a health maintenance/risk assessment questionnaire that adapts to the patient’s literacy level and computer skills.

Her passionate teaching and research studies toward health information have inspired many to become leaders in the realm of health information. We all appreciate Dr.Wildemuth for sharing her wonderful journey related to her research studies and her lives. We were considerably pleased to listen to it.

Image source: http://ils.unc.edu/~wildem/wildemuth.html

Misinformation Nation – Why Facts Fail Us

Because information is the basis for the political and societal decisions that determine the fabric of society, misinformation can result in serious consequences in a range of domains, including health. Demonstrating this point, unsubstantiated claims of a link between vaccination and autism resulted in decreased vaccination and subsequent increases in vaccine-preventable disease.

What accounts for the spread of misinformation? Studies have indicated that people are most likely to pass on information if it elicits an emotional  response in the recipient regardless of the information’s truth. When parents who believe their children have developed autism as a result of vaccines present their beliefs as facts, for example, their claims are more likely to be repeated in popular TV, radio talk shows, TV dramas, and documentaries. People also tend to extract knowledge from sources that are overtly fictional. Marsh, Meade, and Roediger (2003) demonstrated that even when information from clearly fictitious stories contradicts common knowledge, people still use relied on it to respond to quiz questions.

There are also instances in which misinformation is intentionally manufactured. Though the public is generally aware that politicians are not always credible, they are often unable to distinguish between politicians’ inaccurate and accurate statements (Ramsay et al., 2010). Within 5 weeks of Sarah Palin posting a comment about “death panels” on Facebook, 86% of Americans had heard the death-panel claim. Among these, half either believed it or were not sure of its accuracy. Vested interest groups also disseminate misinformation, particularly in the realm of public health. In 2006, a U.S. federal court found that major cigarette companies had intentionally denied, distorted, and minimized the hazards of cigarette smoking (Smith et al., 2011).

Our information environment is ripe with potential for misinformation. Media can inadvertently oversimplify, misrepresent, or overdramatize scientific reporting, leading to misunderstanding. Additionally, unreliability proliferates many websites. A content analysis of the first 50 Web sites matching the search term “weight loss diets” revealed that only 3 delivered accurate dietary advice. Even so, the majority of Americans look for health information online (Fox & Jones, 2009).

For information on why and how our brains resist correction of misinformation, check out next week’s post.

Information source: Lewandowsky, S., Ecker, U., Seifert, C., Schwartz, N., & Cook, J. (2012). Information and   its correction: Continued influence and successful debiasing. Psychological Science in the Public Interest, 13(3), 106-131.

Image source: http://obrag.org/

The Preference for Paper

A study showed that health educators prefer to distribute paper materials instead of directing patients to online information. Reasons for this preference include:

    – 61% said laptops and smartphones are too expensive
    – It’s easier to customize a packet of information after everything’s printed out than to customize digital communications
    – Older patients don’t always have access to technology
    – Educational tools don’t take in account health literacy (the patient’s ability to understand health information)

This study included nurse practitioners, diabetes instructors, registered dieticians, and social workers. These providers have more communication with patients than MDs, and are more likely to explore the patient’s unique concerns before deciding on the best treatment.

Despite providers eschewing technology, the survey reported that 59% of patients bring in downloaded materials to their visits. 50% of the patients looked up online health information to learn about their conditions, and 35% were looking for more information about a specific medicine. However, 30% of educators said that patients are unable to distinguish between credible and unreliable sources for health information.

The study illustrates a clear gap between patients and providers in regards to online health information. Patients are turning towards online health information in ever increasing droves, and instead of adapting, providers are still offering print materials. There needs to be more communication between the patient and provider on online health information. The provider should at least become familiar enough with online health information that he/she can point the patient to credible sources and tell the patient how to distinguish good sources from bad. I also believe there are some great online health tools available, including patient support communities and calculators that calculate calorie intake and expenditure. However, due to the vast amount of information out there, it is hard for a regular patient with no medical training to navigate. At this point, the provider is needed to educate the patient on deciphering and making judgment calls about the information. Of course, how do we educate providers about talking with patients about online health information?

I was bothered that online information and tools seem to be inaccessible to providers. Is it because of a dismissal of anything online or because the information and tools are not user-friendly? My guess would be a little from column A and a little from column B. As health communicators, we should find ways to make online health information and tools more accessible to both providers and patients. If providers have complained that online materials are more difficult to customize and put together, how can we make this process more user-friendly?

Picture via somadjinn from stock xchng


That’s what her status said…

When I seeking new information there are two things I want: speed and credible information. I want to be able to find and understand this new information quickly and I want the information to be true and from a reliable source. Given my two criteria, I was not surprised that according to Pew Research, most (80%) people are turning to the internet for medical information. I, too, have done this a time or two. But I was amazed to learn that one study found 33% of respondents use social media (Facebook and Twitter) to research diagnosis and treatment/drug options.

I am left wondering if using social media as a source for clinical health information is actually beneficial to the user. Yes, social media allows the user to interact with others and can provide the user with social support which can have a great impact on a person’s overall health. But I wonder is the quality of the information suffering. Who is to say the information shared on social media is actually accurate? What about people with lower literacy and lower health literacy–are they able to differentiate between a crediable and non-crediable source.

It appears that the traditional role of the medical provider as the primary source of health information has been taken over by the internet and social media. While it is good to have the information more widely available, is too much information detrimental? Maybe it is time to re-evaluate how to promote the most reliable information.

Electronic health records: Funded, but not yet functional

Nurses in class

It's time for health care professionals to learn about EMRs, but who will talk their patients into using them too?

They save trees (less paper), are easy to search and the federal government is throwing billions of dollars behind their implementation. So, what’s the problem with electronic health records (EHRs)?

Patients don’t seem to want them, or know much about them. A survey by PwC (PricewaterhouseCoopers) found that “only 14 percent of consumers said they get their medical records electronically from their physician’s office, and 30 percent don’t know why they would need to.”

Where is the disconnect between this efficient and potentially life-saving system (medical records can help catch mistakes that humans sometimes miss on paper) and implementation?

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