This is a request for help finding people who have had bad experiences with online health resources.
Let me first say that the internet is often a positive force in people’s lives.
My own organization’s research can paint a rather rosy picture: teens are mostly kind to each other online, technology users have more friends than those who stay offline, more people are online than ever before, etc.
But there is another side to the story.
Pew Internet has also documented the fact that, among other groups, people living with disability and those living with chronic health conditions are disproportionately offline. Some people have only dial-up or intermittent access, like at the library or a friend’s house, and therefore miss out on important conversations or information.
The internet can also transmit false or misleading information. A 2010 survey found that 3% of all U.S. adults said they or someone they know has been harmed by following medical advice or health information found online (1% minor, 1% moderate, and 1% serious harm). Thirty percent of adults reported being helped.
There are emotional pitfalls online, too. A 2006 Pew Internet survey found that 10% of people seeking health information online said they felt frightened by the serious or graphic nature of what they found online during their last search.
Amplifying that dark side, a November 2008 Microsoft study found that “Web search engines have the potential to escalate medical concerns.” Now, I have my quibbles with that study, but I think it points to an important truth: online health information can be scary. You can’t unsee some pictures. You can’t unread some blog posts. You can’t get back that night of sleep you lost worrying, searching, wondering what’s going to happen to you, your child, your partner, your parent.
Research — Pew Internet’s and others’ — suggest that, at times, people are right to worry, to ask the scary question, and to post frightening stories. But sometimes the pain resolves on its own, the fever subsides, or the injury heals perfectly.
I would love to hear from people who fit into the small groups listed above — those who don’t go online (or who have intermittent access), the 3% who feel online health research brought harm, the 10% who were frightened, perhaps unnecessarily. This is an aspect of online life that isn’t yet fully understood, so I’m hoping to learn from people who have lived through it. My promise is to then tell your story — with or without your name attached, your choice — as part of my ongoing mission to help people understand what’s really going on with the internet and health care.
If you’d like, you can post your story in the comments. If you’ve already written about this somewhere else, just post a link. Alternatively, you can email me privately: sfox at pewinternet.org. If you know someone who is offline, please let them know that I am happy to talk on the phone: 202 419 4511. Whatever mode works — I’m listening.
Hello Susannah – I’ve been writing about this issue as it applies to heart patients since reading the Russell Herder study called “Seeking Social Solace” last year. According to this internet patient usage study, heart disease represents barely 2% of all diagnoses discussed by patients on social media. Appalling – given that heart disease is our #1 killer. For example, I wrote about this (including quoting your work) at
http://myheartsisters.org/2011/12/15/seeking-social-solace/ Comments to this post were particularly enlightening.
Thank you, Carolyn! Great post and yes, very enlightening comments. The first one struck me, especially, regarding how drug ads have made fibromyalgia “legit” — make the conversation easier to start when people have seen the term before. She also mentioned that few female celebrities talk about heart disease. I wonder if there will be a Rosie effect for people discussing heart disease more openly, either online or offline.
Here’s my story: For the colorblind, red links amidst black text are invisible. This is a true disability that, because it doesn’t cause physical pain, or prevent mobility, is almost completely ignored by all website publishers. A few gracious souls have accommodated our request for link visibility, but most think it’s a joke. That’s typical. If one isn’t affected, why care?
Thanks Susannah!
Wow, I had no idea. My favorite color is orange so I chose it for my link color, not imagining that it could be invisible to people who can see that shade (can you?).
“If one isn’t affected, why care?” <-- oof, that cuts to the quick.
Thanks for your reply, Susannah. Best color for colorblinds, when black text is used, is BLUE, and sometimes orange ( that looks like a real orange and not an apple).
You’d be surprised the number of people I mention this to who simply ignore my input (speaking on behalf of 8% of male population). Colorblindness is a real disability, especially in education, including that pertaining to healthcare.
Thanks again!
Bob, thanks for enlightening us! One of my blog readers told me that my blue links were hard to read on certain web browsers, so I’d been considering using red as my default. But not anymore since reading your points!
Thanks Carolyn. Also, see my reply to Christy Collins.
Bob, would the problem be mitigated if the links were underlined?
Yes, Christy, thanks for mentioning underlining, which also resolves the issue. In reference to that, see how Dan Vorhaus addressed my request at the Genomics Law Report: http://www.genomicslawreport.com/index.php/2009/12/21/genetic-discrimination-comes-in-many-colors/
There is the issue that when an image example is given, it is usually a very dramatic case and not necessarily representative of a common outcome. This is more pronounced in medical literature, where there is also usually no effort made to humanize the subject — so these images can be really upsetting to look at, and misleading if you are not aware of their bias toward extreme cases. I’ve also had this experience with wikipedia as well as websites for surgeons. I think that patients looking for information need to be prepared for this and to understand that boring (mild) cases don’t get written about as readily as interesting (severe) ones.
Look up “hypertelorism” for an example and compare the wikipedia entry or google images to this picture of my daughter who has also been described as having hypertelorism. https://twitter.com/ruraldreams/status/179926321802129408/photo/1 Many kids with her syndrome have hypertelorism and when I look at their pictures on Facebook it is nothing like a google images search.
Even if we do want to consider dramatic cases, it is so much easier to process, and frankly more informative, to see images in the context of a blog or Facebook or email list because the subject is humanized and you can see that there is more to this person than their malformation or disability.
Susannah, just curious: where is the Sharing button for your posts?
Hi Carolyn,
I haven’t added the buttons yet because I read somewhere that they slow down load times and I figured that a lot of people will just share the URL. But I’m in constant beta and open to suggestions — have you found the sharing buttons to be a useful tool on your site?
It’s just a time saver. For example, I decided to reTweet your article, but couldn’t find the Sharing buttons which normally accompany posts, so had to copy your URL, find and open my Twitter account, paste the URL, add a comment. By comparison, clicking a Twitter icon directly attached to an article is just one click. Plus invites ‘impulse sharing’ to help publicize your work. WordPress is fantastic for including these simple Sharing buttons – you can be selective if you like. Easy peasey.
Done! Thanks for the suggestion.
Note: The following contribution is made based on my professional not personal experience. However, much of this was influenced by my friends living with HIV/AIDS with whom I have worked with for over fifteen years on using technology to exchange health care information. Most recently it involves my work with the breast cancer community.
This is the first report that I recall seeing published in a peer review journal about an adverse effect related to the Internet and health care:
Weisbord, S. D., Soule, J. B., & Kimmel, P. L. (1997). Poison on line–acute renal failure caused by oil of wormwood purchased through the Internet. N Engl J Med, 337(12), 825-827.
Although this may be an accurate account of what transpired it does not necessarily mean the Internet was the cause of this outcome in other instances. I think it is quite possible that anyone could have learned about and purchased wormwood offline and a similar effect may have resulted.
This paper cause a bit of a backlash when it was published in 1997. Physicians began to say things like, “See I told you the information on the Internet was not reliable”. However it did provide us with the impetus to find ways to formalize how to discern credible health-related content on the Internet.
As for issues related to disability, accessibility and assistive devices I also became aware of this while working in HIV/AIDS as there are some opportunistic infections that can lead to blindness, which prevents an individual from viewing information online unless the site is designed to work with an assistive device. I’ve published a few papers in this area including the following:
O’Grady, L. (2005). Accessibility compliance rates of consumer oriented Canadian health care web sites. Medical Informatics and the Internet in Medicine, 30(4), 287 – 295.
I had hoped that this paper would draw attention to this issue and the Canadian government would implement a similar initiative such as the US-based http://www.section508.gov. There are now some guidelines in this area for Canadian healthcare web sites (http://www.tbs-sct.gc.ca/pol/doc-eng.aspx?id=23601§ion=text). The World Health Organization also has some guidelines (http://www.who.int/features/qa/50/en/index.html).
I don’t think many individual web designers/developers purposely avoid adhering to this guidelines – I just think they are not aware. More education about this issue is definitely required. I often hear praises about the Internet being a great source of information for people with health conditions but rarely hear that we must also be mindful of inclusive design issues.
As for some of the other, more darker aspects of the Internet in relation to health information – people who are disturbed or distressed about material they find online – some research on this has been conducted, in particular Miller’s work on “blunters” and “monitors”:
Miller, S. M. (1987). Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat. Journal of Personality and Social Psychology, 52, 345-353.
I also have some findings in this area based on some research I’ve conducted in the breast cancer community (results forthcoming). In essence it mirrors what Susanna has written above regarding emotional pitfalls about information found online. As a result I’ve been thinking more about some type of “buddy system” or a way to find someone who can help by searching, filtering and reporting health information online depending on an individuals’ preferences. This element of a “caregiver” role would focus more on providing informational rather than emotional or practical support, which may be ideal for some who are becoming burnt out in dealing with the latter two issues.
Recently a report was published by a company called, Healthcare Engagement Strategy on “Reportable Adverse Events on the Worldwide Web” (http://engagementstrategy.com/articles/reportable-adverse-events-research/). The description of the contents of report states, in part:
1. What kind of social media conversations are likely to result in reportable adverse events?
2. Are there variations in the prevalence of reportable adverse events online by therapeutic area, platform, country or language?
3. How can pharmaceutical companies choose the most effective digital engagement channels to suit their approach to handling reportable adverse events?
It appears to be written for a pharma audience. If Susanna can get Pew to spring for £495.00 to purchase it I’d be interested in reading about some of the highlights of what it provides 😉
Susannah,
Thank you for exploring this question. For my AU class, we focus on the “dark sides of social media” for a whole week during the semester. There are many benefits to new technologies, but there’s an awareness of its limitations and dangers that I personally find to be a critical component of digital literacy. I’ll be following your progress on this item!
Best,
Alex
Thanks, Alex — do you have your syllabus online? I’m interested to see what you assign for readings that week.
TheHealthCareBlog.com is hosting my post, too, and has some interesting comments, including one from Colleen Jones, whose org did a study of how people judge the credibility of information online.
Check out the thread:
http://thehealthcareblog.com/blog/2012/09/06/the-internet%E2%80%99s-downsides-tell-us-your-stori/comment-page-1/#comment-258390