Online patient groups: why so under-used?

by Carolyn Thomas  ♥ @HeartSisters ♥   2nd in a 3-part series:

This may come as a shock to health care professionals, particularly to the ones who cringe when their patients bring in health information they found via Dr. Google. But it turns out that the accuracy of information found on online patient support groups is actually surprisingly reliable. For example, the British Medical Journal reported that most false or misleading statements in online patient groups are in fact rapidly corrected by other participants in subsequent postings. And there aren’t many of these false or misleading statements. The journal published an interesting study that found only 10 of 4,600 online patient group postings studied (that’s just 0.22%) were actually found to be false or misleading. But of these, seven were identified as such by other site participants and corrected within an average of four hours and 33 minutes.(1)

  Online patient communities are web-based gatherings of those of us who share common health concerns.  They can be valuable resources to help us feel less isolated as we make connections with others in the same boat. Academics who have studied online patient groups tell us that they have several advantages compared to leaving your home on a rainy night to travel halfway across town to attend an in-person support group meeting, including:

• accessibility (online groups are open 24/7 in the privacy of your own home – you don’t have to wait a whole week or a month before you can get answers to your questions)
• anonymity (you can register with a pseudonym)
• invisibility (baggy sweats and greasy hair optional)
• status neutralization (no way to tell the rich from less-rich members)
• greater individual control over the time and pace of interactions (show up at midnight, or take your time responding if you like)
• opportunity for multi-conversing (you can participate in several topic “threads” during each sitting)
• opportunity for archival search (look up everything that’s been previously shared about a specific topic)

We might add “free“ to this list, too – as there may be a per-session fee for in-person groups to help fund the costs of the facilitator/venue rental/refreshments. Online health-related groups are populated not only with patients, but  also with undiagnosed people concerned about specific symptoms, as well as people caring for loved ones with the condition. As John Novack, Communications Director at the online patient support community Inspire.com, once told me:

“Women make up the majority of our communities on Inspire. Even our prostate cancer support group has a significant percentage of women members. They are the spouses or daughters of the prostate cancer patients.”

If online support groups are so wonderful, why is it that relatively few patients actually take advantage of them? When Dutch researchers, for example, studied patients being treated for arthritis, breast cancer or fibromyalgia, they found that while 10% of the patients had engaged in face-to-face meetings for patients living with the same diagnosis in the past year, only 4% had gone online to seek out support communities there.(2) Inspire’s WomenHeart online patient group has about 24,000 members. Consider, however, that over 42 million women in the U.S. alone are living with heart disease.

About 40% of the medical conditions that were disclosed by patients online last year were cancer-related, with breast cancer patients much more likely to share information about their diagnoses than those afflicted with other forms of the disease – even though four times more people are diagnosed with cancers other than breast cancer each year.

Last year, I learned while researching a Heart Sisters blog post that, according to Minneapolis-based marketing firm Russell Herder, heart patients make up barely 2% of all diagnoses discussed by patients online, the second smallest category of all patients. You might be as shocked as I was at that news, given that, compared to every other disease included in this study’s findings, heart disease is our biggest killer. Read Seeking Social Solace: Why Aren’t Heart Patients Online? for some possible reasons for heart patients’ unique reasons for not sharing online.

But all is not perfect in online patient support groups, no matter what the diagnosis that members share in common. As I wrote here in Discover. Join. Leave. The Life Cycle of Online Patient Groups, online communication is also known to be “disinhibited”.   Dr. Henry Potts of the U.K. explained this in his 2005 study, published in the journal Health Information On The Internet:

“Disinhibition means that the nature of online communication, the absence of social cues, and the perceived intimacy and anonymity  mean that people may be less inhibited in their online behaviour.

“This may be a positive thing in the context of a support group, helping people to discuss difficult issues, or overcoming problems of embarrassment.

“But disinhibition is also seen as problematic in many online communities when it leads to ‘flaming’ (deliberately provocative or insulting posts) or ‘spamming’ (unsolicited commercial messages).”

Flaming can also include people we know as “trolls”.  As Israel’s Dr. Galit Nimrod describes them in a report on the distinct phases among those joining, participating in, and leaving online groups:

“After certain site visitors become novices, they do not necessarily become active members. They can also become trolls, described as group members with a high level of activity for a short period of time who are mainly interested in disturbing the community.”

Read more about trolling, flaming, and spamming behaviour examples in this post.

Rich Millington of Fever Bee Community Consulting advises those who manage online communities. He cites a number of red flag warnings that mean an online group is going to have trouble attracting or retaining members. For example:

• No new posts in 24 hours. If an online community goes an entire day (except Christmas) without a single interaction, it’s on the brink of failure. Push the panic button.
• Few members are joining. Community members are transient, they get jobs, move location, start families.
• Lack of friendliness. While arguments are important, friendliness is more important. Do members seem less friendly recently?
• Boring discussions. Subjective, but important. Do the discussions feel like they’re less interesting recently? Is there a poor quality of discussion topics?

What can you do if you are interested in making your own online support community experience safe and productive? Here’s some good advice from patient advocate Trisha Torrey, author of You Bet Your Life! The 10 Mistakes Every Patient Makes:

1.  Stay anonymous. Don’t use personal information that could help someone identify you. Choose a user name that sounds friendly, or represents you in some way, but doesn’t let anyone figure out who you really are, where you live, or what your phone number or email address is.  The flip side of staying anonymous is that everyone else is anonymous, too. That means you have to be cautious about who you trust or don’t trust to give you good information. Once you have participated for a while, you’ll learn who is who. There always seem to be some people who make it difficult for others. And there will always be people who are trying to sell you something – another good reason for you to stay anonymous.

2.  Do participate, and offer support to others. You may be surprised at how empowering it can be to share the information you have gathered, or stories about your successes or even failures.

3.  Keep an open mind. People from many walks of life participate online. While you choose your friends in person based on commonalities of your age, gender, location, interests, etc. – most of those commonalities don’t transfer online. The people you engage with online may have only one aspect of their lives in common with you – the diagnosis or symptoms you share. And most of those are suffered regardless of all those other age, gender or interest-specific commonalities.

4.  Verify any information that could affect your health. Remember, the folks who are posting alongside you are just like you – they don’t have medical knowledge or experience. If someone recommends a treatment to you, verify the information, learn what you can about it, then share the information with your doctor. Never try an alternative therapy without getting professional advice – in person – from someone you can identify and whose credentials can be verified. Don’t begin another form of treatment without discussing it with your doctor.

I’d add a fifth tip to Trisha’s excellent list: read the fine print on any online patient site you’re considering. Find out who’s funding the site, and what the specific privacy policy is on who’s paying the site owners for the information about you and other members that will be freely shared  online. Learn more about how those running your online patient groups make money in the final post in this 3-part series: “What Really Goes On in Your Friendly Online Patient Group“. .

♥  This is the second in a 3-part series on online patient support groups. The other posts are “Discover. Join. Leave. The Life Cycle of Online Patient Groups” and “What Really Goes On in Your Friendly Online Patient Group”

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Q: What has your own experience with online support groups been like?

NOTE FROM CAROLYN:   I wrote much more about how women seek out patient support in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).

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See also:

Has industry co-opted patient engagement?

“Seeking Social Solace”: why aren’t heart patients online?

Health information online: how to tell the trash from the truth

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. (1)  E V Bernstam et al. “Accuracy and self correction of information received from an internet breast cancer list: content analysis”. BMJ 2006; 332 doi: http://dx.doi.org/10.1136/bmj.38753.524201.7C

(2)  Cornelia F Van Uden-Kraan et al.”Determinants of Engagement in Face-to-Face and Online Patient Support Groups” Journal of Medical Internet Res. 2011 December 7. doi:  10.2196/jmir.1718 PMCID: PMC3278092 .