Online patient groups: why so under-used?

12 Sep

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 of online support groups been like?

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See also:

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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 .

17 Responses to “Online patient groups: why so under-used?”

  1. Jennifer Haapala Merhar September 14, 2013 at 5:26 pm #

    I very much enjoy and use online support. 12 years ago with a thyroid support group. Last year with hystersisters and now my heart support groups although I wish I found heart support 7 years ago when the nightmare began. I also attend an actual support group once a month and learned a lot with two rounds of cardio rehab. It takes a lot to get through my thick skull and retain the info and get well.

    Everybody keep up the good work. I am just glad that electronics got easier and smaller and can now keep in touch online.

    Like

    • Carolyn Thomas September 14, 2013 at 7:14 pm #

      Hi Jennifer – looks like you’ve had many positive experiences with online AND in-person support groups, the best of both worlds!

      Like

  2. Vetia September 12, 2013 at 6:01 pm #

    Hi Carolyn.,

    We are both on one of the sites and I truly enjoy my friends that I have made there. It is a good place for information and for someone to lean on that is in the same boat so to speak. There is such a strong connection with the women I’ve talked with.

    But with a degree of anonymity comes a degree of cruelty. There have been a number of times in which the site has had to bring a close to the conversation. You find that with those sites that some people who yell the loudest and cause the most problems have no form of heart disease. They come to the site trying to sell supplements and tell those of us who are truly sick how to cure ourselves.

    I have found that as much as I love the site I don’t want to comment anymore for fear of unwanted and unjust attacks. Some of the friends I’ve made we talk through regular e-mail and some over the phone. They still look for the comfort of others, they just can’t take the hate they feel from others. I would have left as well but for some of my friends it is the easiest way to reach me.

    Robin

    Like

    • Carolyn Thomas September 12, 2013 at 9:24 pm #

      You’re right, Robin (sadly!) – Why do such valuable and important resources have to attract the mean-spirited, the cowardly, the cruel, the crass salespeople along with the nice normal folks? Maybe the core value of such sites is the opportunity to connect offline with the sympatico souls we meet there?

      Like

  3. Just Suze September 12, 2013 at 9:49 am #

    Early on, I found most on-line support groups for heart disease were very male-centered, and not very welcoming to women.

    The implication was that poor little women were imagining they had heart disease. There were others that I called the bragging sites, which tried to shame people for not returning to the Type A lifestyle: 50 hour work weeks, volunteering, marathoning, etc. I stuck with the Cleveland and Mayo Clinics websites for several years.

    Thank you, thank you, thank you, Carolyn, for HeartSisters! I feel I can find support and solid information here.

    For me, the drought is over.

    Like

    • Carolyn Thomas September 12, 2013 at 4:11 pm #

      Thanks very much for your kind words, Suze – you have just made my day!

      Like

      • vmbales September 12, 2013 at 4:37 pm #

        That’s why I turned to WomenHeart. I was so glad to find other women with the same experiences. Carolyn, I do read your blogs regularly – like I said, with my hands being an issue, I don’t often comment. Thank you for them, they are truly helpful.

        Like

      • Just Suze September 12, 2013 at 6:25 pm #

        You’re more than welcome, Carolyn.

        One thing I forgot to mention – I live in a rural area. The nearest in person cardiac support group is 53 minutes away, according to Google maps. The nearest group for women specifically is 1 hour and 28 minutes away. I suspect that whatever I gained from the meetings would be lost to the fatigue.

        If you don’t mind, I would like to print out several copies of the home page of this website and take them with me to my next appointment. Perhaps the doctor’s office will hand them out to the women in the boondocks.

        Like

        • Carolyn Thomas September 12, 2013 at 9:20 pm #

          Yes of course, by all means, you’re welcome to help spread the word about this site. Thanks so much for doing that. Your comment about the logistical challenge of getting to and from a face-to-face support group is an important one; it’s one of the reasons that many of us who find evening meetings too exhausting simply can’t even consider attending in person – never mind adding a long commute onto that challenge.

          Like

  4. Bonnie September 12, 2013 at 8:55 am #

    Carolyn,

    Love your posts — I learn so much from them. Many of them mirror exactly what and how I am feeling.

    Although with this one, I do not agree completely. For those of us who are struggling to begin a support group, we don’t agree with on-line groups in place of face to face. I feel that they both have their place. There is nothing like being able to reach across the table and grasp someone’s hands and feel the connection. I recommend on-line groups, but as another tool not in place of.

    Please, Carolyn, keep up the good work. You are an inspiration to so many.

    Like

    • Carolyn Thomas September 12, 2013 at 4:09 pm #

      Thanks so much for bringing up this important point. I hope I didn’t leave the impression that I think it must be “either/or” when it comes to patient support groups (online or in person). There are pros and cons of each. For example, the “disinhibition” that we see in online groups (and its accompanying troll behaviour) is possible because online group members are generally anonymous. Trolls are too cowardly to use their real names, and would likely not dare speak this way in person at face to face groups – and group facilitators there are more likely to intercede to stop/prevent any such disruptive comments. I agree – online groups are not “in place of” face to face groups, and vice versa.

      Like

  5. vmbales September 12, 2013 at 8:27 am #

    The pain in my hands often prevents me from commenting on help sites. Though I would love to find some way to participate. Very few know how truly severe my “invisible illness” really is and they don’t really want to know. With no friends (only a spouse who puts up with so much) and a son who is far away, I have no one to vent to. What do you do in my case?

    Like

    • Carolyn Thomas September 12, 2013 at 3:54 pm #

      I appreciate your comment, VM (especially knowing how painful typing must be for you). In your case, you may need to keep your online patient group comments short and sweet to minimize painful reactions, but asking brief questions or concerns, and keeping your responses brief as well may be worth the effort in terms of what you might get out of the experience.

      Like

      • Rebecca September 13, 2013 at 12:44 pm #

        Many years ago from a hospital posting, I found the phone number of someone who had used a surgeon that I had interviewed. It was helpful to talk to someone who had a double valve replacement. With more testing, surgery (the Ross) was not done. From a forum someone had posted that his doctor had told him that he would know when it was time to replace his valve. It was me listening to my inner voice that it was time for my valve to be replaced.

        All my tests showed that nothing had changed. When I had surgery my valve was falling apart.

        I will always remember the time when one woman on the other side of the world posted a message that the doctors could not regulate her newborn’s Coumadin level. This newborn was getting tested every day for Coumadin. Someone online in the U.S. posted that he could talk to their doctors because he had some patients that were infants on Coumadin.

        The sad thing about heart forums is that sometimes our online friends have died.

        Like

        • Carolyn Thomas September 13, 2013 at 12:53 pm #

          Thank you, Rebecca. So many good examples of helpful information shared online that you may never have stumbled upon otherwise. And it is sadly true: many of us have experienced the deaths of our ‘heart sisters’ online, as happens in my friends’ breast cancer groups as well. Each loss is a chilling personal reminder that life can be very, very short indeed.

          Like

          • Beth Dole September 16, 2013 at 5:41 am #

            I try to offer an online support system though, in which advice can be sought and don’t try to push or sell anything.

            Like

            • Carolyn Thomas September 16, 2013 at 5:57 am #

              Thanks Beth! Yours is a very good example of helpful patient support. It’s a blog like mine, so it’s not considered an online patient forum like the ones being discussed in this article. For many of our patient subscribers, however, it’s a good substitute for online group membership – with no “trolls”! 😉

              Like

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