Blog post by Colin Hung
Last week I had the privilege of attending #HIMSS14 – the annual conference that focuses on innovation in healthcare IT. HIMSS14 was the largest in HIMSS history with over 38,000 attendees and 1,200+ vendors in the exhibit hall.
During the conference I had the chance to meet many friends, collaborators and tweet-peeps in real life. This is a real treat and I truly enjoy this aspect of HIMSS. I gathered some of the photos of the people that were at #HIMSS14 – many of them members of the #hcldr, #hcsm and #HITsm communities. You can see some of the photos here.
While standing in line for lunch one day, the three people ahead of me were debating an interesting question – which was more important: patient engagement, access to information or health literacy. The consensus was patient engagement. This question and their discussion stayed with me for the entire conference. I too believed that patient engagement should be priority #1, but as I toured the exhibits and listened to speakers at various sessions, I began to wonder if I was wrong.
It finally hit me when I was standing in a booth, watching yet another demonstration of a “patient engagement platform” that was little more than a viewer for lab results on a mobile device. Providing patients with access to their health information is laudable. Finding ways to engage patients is noble. But what happens when they don’t understand the information that they are “engaging” with?
As I looked at the screen filled with lab results, I realized that I didn’t have a clue what the information was telling me. I had no idea whether the Complete Blood Counts (CBC) or Electrolytes meant the fictitious patient needed an immediate trip to the Emergency Room or a high-five for being so healthy. I am embarrassed to say that I feel I have very low health literacy.
What is health literacy? The most widely quoted definition comes from the American Medical Association:
Health literacy is the ability to obtain, process and understand basic health information and services needed to make appropriate health decisions and follow instructions for treatment.
According to this definition, I believe I would be considered ½ literate (is there such a designation?). I can definitely follow instructions when it comes to medication and physician instructions, but if you show me a blood test or even my doctor’s clinical notes, I’m not sure I’d be able to make an “appropriate health decision” based on what I read. And therein lies the challenge. What was considered “basic health information” back when the above definition was crafted has changed significantly over the last five years. As patients, we now have access to a lot more clinical information about ourselves than ever before. In fact I wonder if the entire definition of health literacy has to change now that we have explosive growth of personal health tracking devices like FitBits and access to our own health information via Blue Buttons and Personal Health Records (PHRs).
According to the Centers for Disease Control and Prevention nearly 9 out of 10 adults in the United States have difficulty using the everyday health information that is routinely available in healthcare facilities, retail outlets, media and communities. The situation in Canada isn’t much better. The Public Health Agency of Canada reports that 60% of adults and 88% of seniors are not health literate. Basically this means that the majority of people in North America do not have a basic understanding of health information that was available at the time the studies were conducted. That’s well before we had patient portals, fitness trackers and PHRs.
Why is Health Literacy Important? The American Speech-Language-Hearing Association has some compelling evidence on its website:
- People with lower health literacy skills had a higher incidence of diabetes-related problems (Schillinger et al., 2002)
- Poor literacy was associated with a higher risk of hospital admission (Baker et al., 2002)
- Low functional health literacy in women with diabetes was associated with factors that may negatively impact birth outcomes (Endres et al., 2004)
- Inadequate health literacy was associated with poorer physical and mental health in older adults (Wolf et al., 2005)
In an article written by Philip Moeller for US News in 2012, he states that a lack of health literacy leads to a worsening cycle of health problems including:
- The reduced ability to interpret medication labels and health messages
- Failure to select and enroll in the most appropriate health insurance plans
- Failure to understand and use the services provided by their health plans
- Problems taking medicines correctly
- Reduced use of a growing array of free preventive medical services
- More hospitalizations and readmissions
- Greater use of costly emergency room care
- Worse health outcomes and earlier deaths
The lack of health literacy is poignantly captured in the following video from the American Medical Association:
Obviously there is a close relationship between health literacy and overall literacy. From the video it is clear that those who are not able to read at an “average” level struggle with all kinds of information – not just health instructions. General literacy, however, is a problem that’s beyond the scope of an #hcldr tweetchat (although it would make for an interesting dinner conversation). But what can be done to improve health literacy? What can we do to help patients understand or translate the health information that is now available?
Here are some of my own ideas for improving health literacy – to kick-start your own brainstorming ahead of our weekly chat:
- IKEA-like instructions for patients
- Translation/interpretation services for patients offered by employer health plans
- Apps that “read” raw health data and present information in a simple, HUMAN way
- Materials in multiple languages
- Giving more time to providers to explain the details behind clinical decisions
Join us Tuesday March 4, 2014 at 8:30pm ET (GMT-5) for our weekly #hcldr tweetchat, where we will be discussing the following topics:
- T1: What is the role of patients in health literacy? Providers? Gov’t?
- T2: What can we, as healthcare leaders, do to bring more attention to the issue of health literacy?
- T3: What technologies could be used to help improve health literacy?
- CT: What’s one thing you’ve learned tonight that you can take to your place of influence to help a patient tomorrow?
See you on Tuesday night!
“Health Literacy”, Public Health Agency of Canada http://www.phac-aspc.gc.ca/cd-mc/hl-ls/index-eng.php, accessed March 2, 2014
“About Health Literacy”, Public Health Agency of Canada http://www.phac-aspc.gc.ca/cd-mc/hl-ls/index-eng.php#tabs-2, accessed March 2, 2014
“Health Literacy”, American Speech-Language Hearing Association, http://www.asha.org/slp/healthliteracy/, accessed March 2, 2014
“Why Consumers Struggle to Understand Healthcare”, Philip Moeller, USNews, January 27 2012 http://money.usnews.com/money/blogs/the-best-life/2012/01/27/why-consumers-struggle-to-understand-healthcare, accessed March 2, 2014
“Health Literacy”, American Medical Association http://www.ama-assn.org/ama/pub/about-ama/ama-foundation/our-programs/public-health/health-literacy-program.page, accessed March 2, 2014
“Assessing the Nation’s Health Literacy”, Sheida White, American Medical Association, 2008 http://www.ama-assn.org/resources/doc/ama-foundation/hl_report_2008.pdf, accessed March 2, 2014
“Learn About Health Literacy”, Centers for Disease Control and Prevention, http://www.cdc.gov/healthliteracy/learn/index.html, accessed March 2, 2014
“Health Literacy”, National Network of Libraries of Medicine, http://nnlm.gov/outreach/consumer/hlthlit.html, accessed March 2, 2014
“Health Literacy Fact Sheet”, IOM, February 6 2012 http://www.iom.edu/~/media/Files/Activity%20Files/PublicHealth/HealthLiteracy/HealthLiteracyFactSheets_Feb6_2012_Parker_JacobsonFinal1.pdf, accessed March 2, 2014
“Consumer, the health system and health literacy”, Australian Commission on Safety and Quality in Healthcare, June 2013 http://www.safetyandquality.gov.au/wp-content/uploads/2012/01/Consumers-the-health-system-and-health-literacy-Taking-action-to-improve-safety-and-quality3.pdf, accessed March 2, 2014
“Easy-to-Read & Health Literacy Information”, Countway Library of Medicine, https://www.countway.harvard.edu/menuNavigation/userPortals/consumerHealth/HealthLit.html, accessed March 2, 2014
“Consumer Health Information Literacy: Prescriptions for Practices and Partnerships”, Lana Brand and Brittany Rhea Deputy, University of South Florida School of Information, http://www.slideshare.net/lmbrand/consumer-health-information-literacy-prescriptions-for-practices-and-partnerships-7996705, accessed March 2, 2014