A Health Information Divide

This post is first and foremost a thank-you note.

Thank you to everyone who posted a comment, emailed me, or tweeted a suggestion in response to my request for input last July: Crowdsourcing a Survey. Six new topics came directly from those conversations. Thank you to Veenu Aulakh and the California HealthCare Foundation who provided funding for the survey. Thank you to Lee Rainie, Kristen Purcell, and Kathryn Zickuhr, my colleagues at the Pew Internet Project who helped mine and polish up the data for the final report: Health Topics.

Here is what we found: There is a health information divide. Pregnancy and childbirth seem to cut across it. Mobile may change it in the future. But for now, significant portions of the adult population do not have access to up-to-date information on drug recalls, food safety, or treatment options.The most likely groups to look online for health information include:

  • Adults who, in the past 12 months, have provided unpaid care to a parent, child, friend, or other loved one
  • Women
  • Whites
  • Adults between the ages of 18-49
  • Adults with at least some college education
  • Adults living in higher-income households

By contrast, fewer than half of adults in the following groups in the U.S. look online for health information:

  • African Americans
  • Latinos
  • Adults living with a disability
  • Adults age 65 and older
  • Adults with a high school education or less
  • Adults living in low-income households ($30,000 or less annual income)

Only 29% of adults age 65+ look online for health information (mostly because only 40% have access to the internet), compared with 58% of 50-64 year-olds, 66% of 30-49 year-olds, and 71% of 18-29 year-olds who look online for health information. Yes, the internet is an amazing resource, but for whom?  And whose voices are we not hearing from online?  The wisdom of our elders is not well represented.

Caregivers are a potential bridge to older adults: fully 70% gather health information online. And young people, Latinos, and African Americans are increasingly likely to use mobile devices to gather information, which could potentially shift the patterns among those groups when it comes to using health information resources.

Some health topics provide other clues about the road ahead.

Amy Romano was an eloquent and persuasive advocate for including a question about pregnancy and childbirth. One in five internet users has looked online for this type of information, but of course it is even more popular among younger adults and among women, and it cuts across all education levels.

Read what Amy has written about this opportunity:

What if we could help a large population of highly motivated, influential health care consumers become empowered, engaged, equipped, and enabled? And what if they could develop these skills while they were healthy – before they face life threatening illnesses or need to manage chronic conditions? What if transforming the way these consumers participated in their care could reduce the burden of one of the most costly conditions in our health care system and improve the health of millions of people each year?

It’s all possible – if we make maternity care more participatory.

Again, thank you to everyone who contributed ideas. I am a better researcher because of my participation in these conversations. Please dig into the report and let me know what you think. I welcome your comments.

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24 Responses to “A Health Information Divide”

  1. [...] topics. i haven’t had a chance to read it yet, but i have flipped through it and a related post. both are important reading if you’re responsible for employee health and wellness. the [...]

  2. I’ve just discovered a supplemental issue of Medical Decision Making magazine, published by the Society for Medical Decision Making and sponsored by the Foundation for Informed Medical Decision Making (FIMDM). It’s about a nationwide survey, Nov ’06 to May ’07, of US adults about how they approached nine common medical decisions.

    An article late in the issue caught my Pew eye: “Use of the Internet and Ratings of Information Sources for Medical Decisions: Results from the DECISIONS Survey.” Note: this survey only reported on internet use for those nine specific decisions. From the abstract:

    Use of the Internet for information related to specific decisions among adults 40 y and older was generally low (28%) but varied across decisions, from 17% for breast cancer screening to 48% for hip/knee replacement. Internet use was higher at younger ages, rising from 14% among those aged 70 y and older to 38% for those aged 40 to 49 y.

    Also, echoing your earlier findings:

    Internet users consistently rated health care providers as the most influential source of information for medical decisions, followed by the Internet, family and friends, and media.

    From the discussion in the print edition:

    The Internet has undeniably had an enormous impact on people’s access to health care information. But our data suggest that access is not the same as use, and use for one medical decision does not imply use for all health decisions.

    Older adults – those most likely to face a disproportionate number of medical decisions – were less likely to use [the] Internet to seek information…

    All this seems to align with what you wrote about chronic disease: “The people most in need of the internet’s in-depth information are among the least likely to have access to it.”

    • Susannah Fox says:

      Well, I just love the idea of a “Pew eye” – one that is caught by facts and data! It reminds me of another wonderful discovery today: search engines are thought to have a “voice.” Read to the end of this story about how Bing was copying Google: http://selnd.com/gvcExi

      The point about “access not being the same as use” also reminds me of the recent critique I received about our disability data. Essentially, smart critics wrote, just because someone living w/disability says they use the internet does not mean they use it the same way as everyone else. They may have to curtail their use, not go to certain sites, not enjoy all the sound and imagery that other people hear and see. There are degrees of “use” and while I knew that, I had forgotten it and needed to be reminded.

  3. Fard Johnmar says:

    Susannah:

    Very interesting data re: African American/Latino research re: health information. I have to look at the study in more detail, but did these differences cut across income and educational groups?

    I’m also interested in how these results jibe with other data focusing on heavy use of social networks and mobile by these groups. Is it possible that they are asking questions re: health that are being answered via peer groups? For more on the ethnic, social Web, see this article in Ad Age, which I found very interesting (http://pbeye.info/3uH).

    Looking forward to digging into the data more and summarizing it on our @blueeyepath wiki. We find that lots of people use these summaries as a “window” into Pew’s important research.

    • Susannah Fox says:

      Thanks, Fard! We focused our regression analysis on disability and chronic disease in this round, making sure it was truly those factors making a difference, not education, age, etc. so I don’t have a detailed update regarding ethnicity.

      I really value the way Pew Internet’s data is passed along by other experts, such as yourself. Fresh survey results are a luxury item that I am very glad to share since they become richer and more interesting the more people use them. Thanks for all that you do.

      • I am an enthusiastic support of using digital technologies to improve health, accelerate medical innovation and increase the amount of control we have over medical decisions.

        However…it is important to make sure the medium is not skewing decisions in favor of health insurers or government ‘experts.’ It is important to make sure that fearmongering and skepticism regarding new technologies is called out. And it is critical that ehealth not fall prey ‘magical thinking’ and demonstrate improved outcomes or more value, convenience, etc..Seems to me that no healthy skepticism is tolerated and that epatientism can quickly become a religion wherein people like me who don’t buy the dogma are excommunicated or ignored..

        I would also note that as other tools become available health information will become democratized… At least that is the sense I get from all the emerging technologies!

      • Susannah Fox says:

        Hi Robert,

        Thanks for your comments, which I see you’ve also added to the “Guest Post Guidelines” post. I hope you do contribute a post since I’d love to hear more about your work.

        As you may know, I work at the Pew Research Center’s Internet & American Life Project. I don’t advocate for any policy outcomes, I don’t endorse products or people, and I don’t speak for any point of view other than the facts. It’s my great joy to add data to the public conversation about the internet’s impact on health and health care. I post my commentaries here and on other health-related blogs (and on Twitter) because I have found it is the most effective way to be part of the conversation.

        One of the key findings of my research is that using the internet for health is now a mainstream activity in the U.S. This post shows there are still pockets of people who are not part of the information/communications revolution, but they are in the minority. Because health information gathering is so widespread, in fact, I’ve stopped using the term “e-patient” to describe people who do this online activity. I reserve that term for people who take their activities to the next level – engaging offline and online in advocating for themselves and for their loved ones. I would venture to say that that activity is also spreading in the U.S. and encompasses a diverse population.

        Therefore, to your comment, I would not say that my research has turned up such a thing as “epatientism.” Mostly, in my observation, these are people who are using every tool at their disposal to manage their health.

        Once, when they needed health information, people only had books, print newsletters, and in-person or on-the-phone conversations with health professionals, family members, and friends. Now, they supplement those core sources with what they can find online. Please note, however: my research has shown that health professionals, family, and friends still outrank the internet and even books are still popular as health information sources.

        Again, thanks for your comment! If you’re interested in more information about what I’ve written above, please check out my research page on pewinternet.org: http://pewrsr.ch/SusannahFox

  4. Joy Twesigye says:

    Understanding who is engaging on line is very important and so thank you for providing this vital information. Many of the innovations that are discussed in health care currently have something to do with technology. This seems to expand possibilities for those who already use the internet for health purposes.

    What are your suggestions for providers who are caring for those who do not use the internet for health purposes due to access or other reasons—who may be looking into ways to increase communication? Is this where community health workers can be used?

    Also, do you think that more people 65 and older will use the internet as the bulk of the Boomers hit that age group?

    We lay out specifics on how to empower consumers to take personal responsibility for improving their health through education, interactive tools, and incentives at http://www.hopestreetgroup.org/docs/DOC-2480

    • Susannah Fox says:

      Joy,

      Thanks for the question! I don’t have a good answer, but I’ve put out the call on Twitter in case other people have advice.

      As for your question about Boomers “aging in” to the 65+ group and transforming it? In a word, yes. That’s exactly what we’re seeing in the data. Few people are giving up their connections as they get older. There is still a cliff around the age of 75 where internet access drops off. I’d be happy to provide more detailed data if you are interested.

    • “What are your suggestions for providers who are caring for those who do not use the internet for health purposes due to access or other reasons—who may be looking into ways to increase communication? Is this where community health workers can be used?”

      Research has shown that libraries are a very important nexus for this kind of connection. The “US IMPACT” study, released April 2010 by the University of Washington Information School and underwritten by the federal Institute of Museum and Library Services and the Bill & Melinda Gates Foundation, reveals that nearly one in three Americans age 14 or older — 32% or roughly 77 million people — used a library computer or wireless network to access the Internet in the previous year. Among people living in households whose income was less than 200% of federal poverty guidelines ($44,000 a year for a family of four), 44% used library computers and Internet access.

      Thirty-seven percent of library computer users, an estimated 28 million people, focused on health and wellness issues, including learning about medical conditions, finding health care providers, and assessing health insurance options. In one particular group — seniors (65 and older) living in poverty — a full 54% used library computers for health or wellness needs.

      The study also suggests that library computer use leads to positive action on health and wellness: roughly half of the people who used a public library computer to find doctors or health care providers reported that they made follow-up appointments. Among those who reported researching diet and nutrition issues online at the library, 83% decided to change their diet; among visitors who searched for exercise and fitness information, 84% decided to change their exercise habits. The benefits also reach beyond just the individuals who come into the library: nearly two-thirds of library computer users (63%) logged on to help others; 56% reported helping friends or family with health matters specifically.

      For more information on the 2010 “US IMPACT” study, see http://cis.washington.edu/usimpact/us-public-library-study.html

      Although the “US IMPACT” study focused on public libraries, in many communities there are other libraries that also provide computers and Internet access for the public. In particular, community colleges, which are funded in part by taxpayers, often allow local residents some access to their libraries and/or computing facilities; many public university libraries also offer some level of access to the public.

      I’m a librarian at a state-supported health sciences university, and at our library, service to the health needs of our community — including helping them find the online health information they need — is very important to us.

  5. Jean Riquelme says:

    “highly motivated, influential health care consumers”–that phrase says it all. It’s a code word for those who view health as as a commodity–both patients and providers. The internet, far from empowering decision making, empoowers a kind of enlightened consumerism–where are all the sites that say–do nothing, rest and wait it out?

    • Hi Jean – lots of websites stress that “watchful waiting” is a valid option, especially the sites that talk about shared decision making (SDM), or the online decision aids that are a growing tool for SDM. This google search shows 1.3 million hits.

      That doesn’t mean most providers offer watchful waiting as an option – that’s part of why we’re doing this work here, encouraging people to know their options, participate in decisions, etc.

  6. Prajesh says:

    Hi Susannah,

    This issue has been an area that I have been very interested in for a number of reasons.
    1) As there is a push towards using internet enabled technologies in health care it is assuming that everybody not only has access to but also understands how to use the Internet
    2)In many cases we will find that the population that does not have access to the Internet or know how to correctly use it, are already those that are suffering from health complications (most of which can be prevented). Your findings do show this with the populations that do not go online for health information.

    The thought process then becomes, instead of assuming that everyone has access to this information, leading to an information and knowledge gap, the better standpoint is to assume people do not have access to the internet, especially within these marginalised populations. Meanwhile taking the information that is available on the internet and using more traditional means to get this across to these populations. This maybe through print media Or even by developing offline platforms that have the same information. This may seem to defeat the purpose of the Internet but in the end it is ensuring that the existing health knowledge gap does not get even wider due to the assumed access to internet and technology.

  7. As someone who did this regularly for older relatives for many years, I suspect there are a fair number of people over 65 getting health related information from the web via others.

    I had a mother-in-law in her 80-90s who would come sit next to me so I could find information she needed, she would read online and ask for follow-up searches and sometimes we’d print stuff.

    Other relatives, further away, did the same – asked me to check the web. Or I found info to answer their questions to me.

    Some older friends, in independent/assisted living only have email access in their facilities too. So I cut and paste or print and mail.

    And now have explained that for many friends and family facing similar issues — many very high tech folks who are simply not aware of online value in this arena and too swamped with care-giving to think clearly.

  8. Mark Boguski says:

    Pregnancy and childbirth is one are where gov’t consumer health info is woefully inadequate. There are 27 Institutes and Centers at the NIH each devoted to specific disease areas but no “National Institute of Pregnancy.” We’ve written about this deficiency in more detail here:
    http://www.medpagetoday.com/Blogs/22332

  9. Mark Boguski says:

    Susannah,
    Did your survey include people who are passively exposed to online health information as opposed to people who actively seek it? Barron Lerner has shown that people can increase their knowledge of medical topics and conditions, not because they were specifically seeking health information but rather as a consequence of their primary interest in celebrities’ lives. I suspect that this cuts across all demographic groups. There is a related phenomenon called the Goody-Gaga Effect
    http://www.medpagetoday.com/Blogs/24696

  10. [...] this month, Susannah Fox discussed a health Information divide based on a recent report. This divide was also confirmed in a recent literature review on the [...]

  11. [...] 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 [...]

  12. This is such a great resource that you are providing and you give it away for free. I love seeing websites that understand the value of providing a quality information. Thanks for sharing.

  13. [...] Sake The number of Americans turning to the Internet for health information keeps growing. Fifty-eight percent of 50-64 year-olds, 66 percent of 30-49 year-olds, and 71 percent of 18-29 year-olds look online [...]

  14. [...] Fox describes it well in her blog post, saying: “significant portions of the adult population do not have access to up-to-date [...]

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