This is a guest post by Jessica Mark, healthfinder.gov and Outreach Program Manager, Health Communication and eHealth Team in the Office of Disease Prevention and Health Promotion at the U.S. Department of Health and Human Services
We all struggle with complex health information. In fact, as many as 9 out of 10 adults experience limited health literacy skills at one time or another. How does this affect the way we find, understand, and use health information on the Web? This is a critical question for the e-patient era. After all, it’s only a matter of time before we are all e-patients.
Designing for Health Literacy Online
Susannah Fox recently highlighted the health information divide in her February 1 post. As we work to expand access to the Internet for all Americans, we must work in parallel to improve the quality and usability of health information on the Web. For many information seekers, the Internet can be stressful and overwhelming—even inaccessible. Much of this stress can be reduced through the application of evidence-based best practices in user-centered design. As health communicators and public health professionals, we have much to learn from the field of usability. (For starters, how about the fundamental belief that the problem lies with the Web site—and not the person using the Web site?) As more health information and services move into the online environment, Web developers and health professionals must find new and better ways to engage with the public in more meaningful ways.
At the Office of Disease Prevention and Health Promotion (ODPHP), we have taken this to heart. For the development of healthfinder.gov, ODPHP conducted 15 studies over 4 years with more than 750 people age 18 to 84, many with limited literacy skills. Findings from these studies drastically changed the way we present health information on our Web sites. For example, we learned valuable information about simplifying navigation (”back” and “next” buttons work great), keeping content in the center of the screen (many users ignore text in the right-hand margin), and offering multiple search and browse functions.
More research is needed to better understand how people with limited literacy skills and limited health literacy skills use the Web.
A National Priority
On December 2, 2010, the U.S. Department of Health and Human Services (HHS) unveiled Healthy People 2020, thereby setting a 10-year agenda for improving the Nation’s health. The goals and objectives included in Healthy People 2020 will determine national public health priorities for the decade—influencing everything from public health research to resource allocation. For this reason, I am both excited and optimistic about the increased focus on improving health communication and health information technology (IT) in Healthy People 2020. The Health Communication and Health IT topic area outlines 13 objectives for the year 2020, focusing on improving health literacy, patient-provider communication, and accessibility of online health information.
- In the coming months, ODPHP will join with Health Literacy Missouri to host a series of Twitter chats about improving health literacy. During a recent Twitter chat, the discussion focused on what Healthy People 2020 means for health communications and health IT. A summary of the conversation is available from Health Literacy Missouri.
- We encourage you to explore the Healthy People 2020 Health Communication and Health IT topic area and to share your feedback with us through the Healthy People 2020 LinkedIn group.
Moving Forward
Over the course of the decade, the e-patient community will have opportunities to influence developments in health IT that will lead to more productive patient-provider interactions, enhanced access to evidence on the effectiveness of treatments and interventions, and personalized tools to promote health and prevent disease.
One area of opportunity is where health and digital literacy meet—much of this lies in yet unexplored territory. We encourage exploration and research in order to:
- Fully define digital literacy and understand its influences on health literacy.
- Improve our current understanding of how people with limited health literacy use and apply the technologies of our digital age.
- Discover more ways to make information accessible—regardless of Internet experience, comfort with technology, and online search and navigation skills.
Ultimately, the evolution of information and technology should be driven by users. We need to be listening to them, working to better understand them, and co-designing the next generation web-based health guidance. My colleagues at ODPHP and I support this charge. With your help, we can build a truly patient- and public-centered health system.
Resources:
Thanks, Jessica!
You link to some great resources in the post. I’ll highlight one:
What We Know About Web Users With Limited Literacy Skills
http://www.health.gov/healthliteracyonline/know.htm
[quote]
Willing and Able
Most importantly, we know that users with limited literacy skills are generally:
* Willing to use the Web to access health information
* Successful in accomplishing their tasks when Web sites are designed well
More often than not, poorly designed Web sites—more than limited literacy skills—contribute to users’ challenges online.
Simple navigation and clear content can help adults with limited literacy skills find, understand, and use health information on a Web site.
[end of quote]
I first heard about the extensive research HHS had done around health literacy at a conference held at the CDC in 2009, which I wrote about here:
Social Media’s Promise for Public Health
http://e-patients.net/archives/2009/08/social-medias-promise-for-public-health.html
One the points made by a speaker from the Healthfinder team stuck with me: Make it easy to print pages from your website. Duh, right? But people might be surprised at how many sites do not follow this key piece of advice.
Here’s why you should:
First, the person doing the search may not be the target of your information, but rather a friend or relative helping someone who does not have internet access (that rings true for me since our research shows that half of health searches are on behalf of someone else). A print-out can be shared.
Second, the person who needs the info may not have the literacy skills required to understand it, but they may have a friend or relative who can read it to them or explain more about what it means. That resonates with what I heard Neal Calman, MD, once say, essentially: you never know who may have a niece who is a nursing student. Don’t assume that the story ends with the person sitting there at the appointment. Give them something to take home, read at their own pace, and ask for help from their own network if they need it.
That, of course, dovetails with what Pew Internet has documented in the Peer-to-peer Healthcare report:
http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx
Wonderful post!
I wonder if eHealth literacy could be also a tool to integrate the elderly into Information Society / Network Society. It could be a tool to engage them within the tremendous potential of the Internet for other aspects of their lives. Health contents could be just an excuse to capture their attention (e-awareness) and help them to be online (e-readiness)
Thanks, Susannah, for the opportunity to post and share what we’re doing in this space!
We’ve taken the “make it actionable and make it printable” mantra to heart. There’s a whole lot of health information out there — but a whole lot less that actually supports the “what do I do about it?” piece. One way we’ve taken advantage of that is to add one-page tools to healthfinder.gov on very action-oriented steps like “Start a conversation with a loved one” or “Questions to ask the doctor” on a variety of topics. (Here’s an example: http://healthfinder.gov/prevention/ViewTool.aspx?toolId=40&catId=9). The principle here is that each tool provides a clear action step, and brings in that interpersonal support element that is so important in health behavior change, and as you point out is well-validated by the research from Pew and others on how people are accessing and sharing health information online.
I’d love to hear from others on what they’re doing to improve health literacy online, and to bridge online health resources with offline personal connections and resources. And how can we take better advantage of this through newer technologies and social media too?
Francisco, thank you! I love the idea of eHealth literacy as a catalyst to overall digital literacy too. I’d love to hear/talk more about how that might work.
Dear Jessica,
I have not figured out how to leave a reply with some figures so trigger by your question I have posted
http://www.ictconsequences.net/2011/03/13/ehealth-literacy-as-a-catalyst-to-overall-digital-literacy-among-the-elderly/
eHealth literacy could be a catalyst to overall digital literacy among the elderly because:
1. Health could be a motivation for the elderly to use the Internet (e-awareness)
2. This motivation could be used as a trigger to learn how to use this technology (e-readiness)
3. Health professional and/or health care workers as well as relatives and/or friends could facilitate this learning process (ehealth literacy)
4. Use of the Internet for health could open new fields of participation in society for the elderly.
5. These new fields of participation in society could diminish categorical inequalities and unequal distribution of resources.
I love this, Jessica – the post and the content you link to. Patient-centered, public-centered health system? Game on! And I love the work that’s going on to make the sites more usable.
Observations:
1. You’re exactly right in proposing that “the problem lies with the Web site—and not the person using” it. Anyone who’s ever tried to draw web traffic to a site has learned that or has gone out of business.
2. Apply that thinking to the term “health literacy,” and it flips to become “health info legibility.” Or readability. Or intelligibility.
As we change the culture of healthcare this is no small issue. I’ve heard that some med schools teach students that patients just can’t handle medical information; “you can see it in their eyes,” they’re told. Well, duh. If the Flesch-Kincaid reading level is unnecessarily high, who’s being dumb? Let’s make the information as accessible as possible, then see what’s next.
Said differently, use language that is no more erudite than necessary for the situation.
Another great example is how Wired editor Thomas Goetz proposed we make lab results more intelligible in his TED talk.)
In the work to compare health literacy and digital literacy, I hope all will bear in mind that functional literacy boils down to how high a bar a person needs to jump, to get at the information they need.
3. Applying the consumer-friendly concept in a different dimension, I humbly suggest that if HHS wants to bring its work closer to consumers, they avoid long descriptive names for departments and programs.
[In business terms, y’all got a branding problem.:–)]
Agency names like “Office of Disease Prevention and Health Promotion (ODPHP)” are descriptive but indigestible; I myself only recently discovered that PCORI is something I’m intensely interested in (research into defining patient centered outcomes).
HHS *is* winning on this with user-friendly URLs like healthdata.gov, healthfinder.gov and health.gov. Excellent! I’d just like to see it executed more broadly.
4. It’s WICKED cool that the government (any government) would publish the transcript of a tweetchat! Even cooler than the idea that they’d have one in the first place. You go! Not only that, a curated, groomed, edited transcript, making the good stuff accessible to mortals.
(It would be even nicer if it were online text, googleable, not a PDF. But still, great.)
p.s. The link to the full transcript at top is off – should be http://wthashtag.com/Healthlit
All in all: Keep it up and stay in touch! Pleased to meet you.
Dave — thank you! It’s great to hear from the ground-breakers in this area that we’re on the right track (even if it may take us some time to get there!)
On your comments:
1 and 2. Absolutely. The perspective that people have to “learn” how to use our Web sites, our jargon, our systems is backwards. We need a paradigm shift, and I think it’s on its way. Not to mention that a site or chunk of health information that works for someone with limited health literacy will also work wonders for someone short on time and patience. And aren’t we all short on time, patience and health literacy when it comes down to it?
3. Wouldn’t it be nice if we could get to a world without acronyms too? Great suggestion. Branding and naming is something we certainly struggle with. To your point, in the meantime, we’re trying to make better use of the user-friendly URLs we do have, like health.gov. We’re smack in the middle of some planning around how to leverage this fantastic domain — we’d love to hear others’ thoughts about this.
4. All the thanks for the tweetchat transcript go humbly to Health Literacy Missouri (www.healthliteracymissouri.org). Thanks though! For future chats, we’ll keep your suggestions in mind. One of the ideas behind the chats is to acknowledge that we don’t have the answers by any means. We’re hoping to keep a dialogue going so we can start learning together.
Thanks for the great comments. Pleased to meet you too, and I hope this is the first of many conversations!
There are many missed opportunities for increasing health literacy that we have developed resources to address: http://www.medpagetoday.com/Blogs/24696
We’ve also pointed out a number of perplexing problems with government consumer health information including redundancy, inconsistency and disorganization:
http://www.medpagetoday.com/Blogs/22332
And yet it’s been nearly impossible to obtain any funding through the DHHS Small Business Innovation Research (SBIR) program to study the effects of our “interventions” and support R&D to improve them.