Discover. Join. Leave. The life cycle of online patient groups

4 Sep

by Carolyn Thomas  @HeartSisters 1st in a 3-part series

As you know, online support groups exist for those living with just about every possible health condition. Some support communities even target very specific discussion group members like Lesbians with breast cancer or Jewish alcoholics, as well as a range of issues beyond medical conditions (e.g. parents of twins, bereavement, victims of professional misconduct).

When it comes to going online to seek information, answers or support from your peers, it does appear that there’s a lid for every pot.   

Susannah Fox of Pew Research tells us that 23% of internet users living with a chronic medical condition have gone online in search of others with similar health concerns. She offers a simple definition of what she calls this type of peer-to-peer health care:

“Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people.

“Technology helps to surface and organize that knowledge to make it useful for as many people as possible.”

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.

In an International Journal of Communication paper, Israel’s Dr. Galit Nimrod describes a number of distinct phases that have been identified among those joining, participating in, and leaving online patient groups. These include:

1.  Group members in the first phase of the online support group life cycle are described as “distressed newcomers.”  As newcomers, they visit the communities quite often, but they do not post much.

2a.   When members become more familiar with the online support group, some feel more comfortable and start posting comments or questions to the other group members. These may be described as “active help receivers.”  The active help receivers actively seek knowledge, share content, and socialize with other people. However, not all members actively interact with other members of the group.

2b.  Some members may choose to simply follow (or “lurk”). These may be described as “passive followers.”  The passive followers prefer reading other members’ content and observing the online dynamic. Although lurking is less satisfying than active participation, it has similar empowering outcomes.

3.  As time passes and the shock of being newly diagnosed fades, online support group members may be described as “relieved survivors.”  Some researchers suggest that online groups are an important factor for many in deciding to seek professional help. New members who are not formally diagnosed and treated are often encouraged by their online peers to see a physician.

4a.  The more senior members are and the better they start to feel, the less often they visit the online groups, although they may remain members for long periods and do not lose interest in the issues discussed.  When they do visit the groups, however, they are relatively more active than newer members. An explanation for this may be their belief: “I can be of help to others.” It seems that with time and especially with improvement in their condition, members turn from being passive followers and help receivers into “active support givers.”

4b. Those who leave the online support group after a while may feel that they have learned enough about their condition and the means for coping with it, and can now move on by themselves. These members may simply abandon the group and become “moving-on quitters.

I’ve observed these phases during the past five years I’ve spent as a member of Inspire’s WomenHeart online support community for women living with heart disease. 

This forum was, literally, a lifesaver for me in the early days, weeks and months following my heart attack.

I’d go online several times a day back then – first as one of those “distressed newcomers”, lurking in the background to read all the interesting discussion topics being posted by other women like me living with heart disease, then as an “active help receiver” to check new responses to my own urgent concerns, much later as an “active support giver” in response to others’ concerns.

Why have I stuck around for five years?

As Dr. Nimrod reminds us, there’s a well-known personal perk of being a veteran member of any online group.

“Being able to support others is an important benefit, which may lead to empowerment, a sense of being useful, and even finding more meaning in life.

“Members may find some comfort in knowing that their own suffering has not been in vain, as they can now help others. They may also feel that they are now giving back to a community that helped them in their darker days.

“This does not mean that they stop receiving support from the other group members, but there is now a change in balance.”

But online patient groups may not all be the noble grassroots peer-to-peer lovefests that I once believed them to be. And there’s another darker reason that group members become “moving-on quitters”.

It turns out that the very characteristics of online support groups that make them so popular with some patients may be precisely what’s making them less appealing to others.

As Dr. Henry Potts of the U.K. concluded in a 2005 study, published in the journal Health Information On The Internet:

“Online communication is also known to be disinhibited. This 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).”

During my five years as an active member on my WomenHeart online community, I’m seeing increasingly common examples of this flaming and spamming behaviour.

Spamming includes those who are flogging the latest Dr. Oz-approved combination-miracle-anti-aging-heart-cure-dietary supplement sensation.

Flaming includes those we also know as “trolls”

As Dr. Nimrod explains the life cycle, 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.

An example of this happened just last month when a male heart patient decided to join the WomenHeart online community.

EARTH TO MEN: unless you are the spouse/caregiver of a woman with heart disease, please do not under any circumstances join any online group that’s clearly devoted to WOMEN heart patients sharing their cardiac experiences with other WOMEN.  (And no, it’s not because we don’t love men – we do!) This would be as inappropriate as if I decided to participate in a men’s online support group. Trust me, nobody there wants to hear from me. Nobody!

After posting a number of his offensive and provocative comments in response to a lively WomenHeart discussion about Mayo Clinic’s Dr. Mary O’Connor and her recent essay on gender imbalance in women’s health care called The Woman Patient: Is Her Voice Heard?, the male heart patient in question posted this gem:

“I am sick of hearing the down trodden women were (sic) heart problems are concerned.”

Clearly, this person was not remotely interested in Dr. O’Connor, in participating in the already-active group discussion of her article’s specific  points, or in learning how to spell. He was, in fact, your textbook flaming troll.*

I jumped in to reply to his rude comments (including his accusation that our opinions on gender imbalance in women’s health care were simply “propaganda”). I suggested that he was clearly out of line, and that if he truly believed what he’s posting online (sick of all those downtrodden women with heart problems), he should leave our group, because each one of us, over 12,000 women members with heart problems, was very likely to make him sick.

On the following morning, the Inspire administrator behind the WomenHeart support group sent me an email advising me that, because I’d asked the troll to leave our group, my response to him had been deleted from the site; my reply was deemed “inappropriate and detrimental to the group.”

My first reaction:

“Wow . . .  The trolls are winning.”

This online community is moderated, meaning that an administrator or team of people is working behind the scenes to ensure a consistent environment, ostensibly checking that destructive behaviours such as those of our troll are filtered out.

In this case, however, the admin team had deemed that I was the one who had violated the site guideline: “Don’t tell other members to leave!” which begs the question: don’t trolls deserve to be kicked out?

But here’s what Jaclyn Friedman has to say about online sites that protect the free speech rights of disruptive trolls rather than the legitimate members of the site. The executive director for Women, Action and the Media, a nonprofit that advocates for gender equality in the media, told a Mother Jones interviewer:

“The idea that a social media network should be entirely neutral is a myth. Neutral platforms are only neutral for straight white dudes.

“These companies need to make a decision: Do I want to be making money off of a platform where abusers and harassers feel more comfortable than the abused and harassed?”

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♥  This is the first of a 3-part series on online patient support groups. The other posts in the series are: Online Patient Groups: Why So Under-used?” and What Really Goes On in Your Friendly Online Patient Group”

See also:

* Some of the troll’s offending posts were finally removed by Inspire moderators from the WomenHeart forum post called The Woman Patient: Is Her Voice Heard? after other members also began to post statements to him like: “Please find another place to vent your anger.”  

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Q:  What has your online support group experience been like?

 

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20 Responses to “Discover. Join. Leave. The life cycle of online patient groups”

  1. Annette September 7, 2013 at 8:08 am #

    Many online patient groups fit that formula but not all though I have felt lucky to stop following some groups when health problems have resolved. (not often enough)

    I agree with what Mary said and have done this often “skip anything that gets on your nerves and leave it to people who want to have an argument.” There are always people you won’t agree with.

    The group I moderate is established and congenial. This was not always the case even though politics is a topic that we avoid. We had a troll with bizarre stories who was finally barred from the group. But there have been others every now and then who get the skip and ignore treatment.

    And if the group goes all cleanses, diets and odd natural methods to achieve health, I am outa there.

    Liked by 1 person

    • Carolyn Thomas September 7, 2013 at 8:53 pm #

      Hi Annette – I guess online groups are a lot like in-person groups: all kinds of opinions, lifestyle choices, political persuasions, dietary beliefs (generally acceptable if shared respectfully). The difference is that in a moderated real-life group, inappropriate or disrespectful troll-like behaviour would not be tolerated.

      Like

  2. Anne September 5, 2013 at 7:09 am #

    Everyone ready for an (in) flaming comment? Lets take this discussion up one level.

    The situation where women are told that “it’s anxiety” (cough, it’s in your head) is absolutely shocking in this day and age. OMG.

    Did we not just live through bra burning (it wasn’t THAT long ago), equal rights, equal employment, etc? In the US, the Department of Justice has an entire division on Violence Against Women, albeit focused on domestic violence. Not sure what is available in Canada.

    Perhaps it’s time to rally the troops and request the Department of Justice (or equivalent) to expand their definition of violence to include all threats to life (for instance, being misdiagnosed by medical professionals).

    A paramedic refused to transport me to the hospital with my second heart attack, claiming that I was suffering an anxiety attack. This is despite 9 inches of cardiac medical records on the table, a medical id bracelet, my cardiologist’s number in my cell phone, and three adults telling him that he was wrong. He not only impaired my ability to seek medical assistance, he threatened my life. Period. I cannot move beyond the fact that this asshole is still a paramedic. An investigation indicates that he has a side business training police and firefighters on how to restrain combative patients.

    [Excerpt of article follows and includes very interesting information related to his thinking and background] – Carolyn’s note: editing for space, I’ve included a limited excerpt:

    “Tactics for Combative Patients”

    “We spend our entire careers making observations and cataloging them into our brain for future use. We know what to look for to determine if our patient is emergent or stable. We do this automatically, either by observation alone or by a combination of questions and general impressions. We process the information, retaining what we need and discarding what we don’t. Early recognition begins with dispatch, followed by scene size-up.

    “Not all combative patients are deranged and out of their heads — that would be too easy. Note the patient’s appearance: Is he calm or agitated, vocal or subdued? Does he have a defensive stance, with teeth and knuckles clinched? Does he seem to have a problem focusing on you? Is he communicating normally, or is he incomprehensible?
    Remember, the patient’s disposition can change quickly, so be prepared.

    “Before restraining the combative patient, ask the following questions: Is there a medical emergency that requires treatment? After initial contact, can we safely observe the patient from a distance until law enforcement officers arrive? Is the decision to restrain based on safety for the patient and crew or made out of anger? On whose authority are we acting? Could the techniques used to restrain be considered a type of lethal force? Can I justify my actions if someone is badly hurt?”

    Liked by 1 person

    • Carolyn Thomas September 5, 2013 at 1:30 pm #

      Hi Anne – this is off-topic from our online patient group topic, but I did want to briefly follow up with an observation of this paramedic’s description of the “combative patient”: his description could easily mimic the perfectly normal responses of a person in the throes of a heart attack. I can guarantee you that I, too, was likely “agitated”, “incomprehensible”, and had “problems focusing” during my heart attack. Few things in life can make us feel more “anxious” than being in the middle of a terrifying cardiac event – particularly when we realize that our symptoms are being dismissed by the very persons dispatched to help us.

      Like

  3. Dr. Anne Stohrer September 4, 2013 at 1:51 pm #

    I agree with the description of the cycles of online patient groups.

    My opinion is that most of the support groups I contacted in early days were not useful: they pretended an intimacy that did not really exist or pushed the agenda of their founder as opposed to heart health and/or moving forward through a life changing event or diagnosis. That is the reason I left most of them.

    This blog rings true again and again, with accurate, helpful information and insightful comments. That is why I “lurk”, gleaning what I desperately need, validation and a feeling of belonging.

    I, too, read the troll’s posts. Rise above, Carolyn, it is clear you are the (nonfat, no cholesterol, noncaloric) cream on top!

    Liked by 1 person

    • Carolyn Thomas September 4, 2013 at 1:58 pm #

      Hi Dr. Anne – I am trying to “rise above”; thanks for that timely reminder. My Smaller Self sometimes wants to just storm off in a rant, thus abandoning the good along with the not-so-good. Love that cream comment, by the way… 😉

      Like

  4. Mary September 4, 2013 at 9:34 am #

    I didn’t read INSPIRE’s WomenHeart thread but “know” of Kels online, a guy who has suffered very much. I can imagine the indignity of being told you have a “woman’s disease”, because it’s invalidating – not only to your pain and suffering, but to you as a male. That’s what women go through, being INVALIDATED and LEFT TO SUFFER, and told that since what they experience isn’t “textbook”, they are anxious, etc. – far, far too often. Often enough to be unjustified medical and gender bias.

    For a man, I’m sure that is horrifying, especially if you have become accustomed to what I would call “white man’s privilege”. And in this particular case, science wasn’t backing him him up as all the heart testing and accumulated knowledge usually does (back up men’s forms of heart disease).

    If his comment said “downtrodden women”, I can only imagine that he felt even more marginalized than women do, maybe because he has never experienced that. That’s no excuse for a contemptuous-seeming attitude toward the group that has offered unlimited support and friendship during his time of deep distress.

    I don’t think it comes from a hidden misogyny, but it could. There is a point though where someone has to take their misery and if they can’t avoid hurting their friends and sympathizers, then they should spend some time to reflect. How many times do we hear of sick people ranting and raving at their caregivers when they are helpless? They are in pain, terrified, cranky and alone. Especially if they have gone to the ER numerous times and have experienced the marginalization most of us seem to know.

    Kels of all people should emerge from this with a GREATER not a lesser appreciation of what women experience, but first you have to be able to climb out of your fog to see clearly. I hope that happened. I liked Kels online and hope that his recent, seemingly more accurate diagnosis yields him better treatments.

    Carolyn, you have never been anything but a voice of reason, and it’s not fair that that the INSPIRE moderators didn’t take a more balanced approach, but I suspect Kels also got a warning. I have had a warning myself, once. Sometimes, the moderators get it wrong; such is life.

    I now skip many threads that might get on my nerves and leave it to the people who want to have an argument. Many newer people do need support. Being a 4a, I have found that I have the energy to do more and participate less. I keep the door ajar with the knowledge that this is a part of me that will always needs and want friends; even online ones.

    All the best, always, Mary

    Liked by 1 person

    • Carolyn Thomas September 4, 2013 at 9:42 am #

      Thanks so much Mary for your wise and compassionate response. Maybe that’s the key – “skip anything that gets on your nerves and leave it to people who want to have an argument.” And the rest of the trolls.

      Like

  5. jdegrand September 4, 2013 at 8:31 am #

    Oh My! I had already read this article early on, so I did not follow through with the comments. All I can say is Wow!

    I have only seen a little poor behavior, I guess I have been fortunate. Early on, I too was guilty of lurking, but I feel more confident now. I feel the world of Coronary Microvascular Disease/Dysfunction is ever evolving, so I do not see myself leaving. Out of respect, when I post, I know that there are those poor men out there who are also lurking and reading, so I include them, knowing that some jerk of an MD, or ER gatekeeper has been horrible to them.

    I have seen their posts about being told they have been told they have little woman’s disease. I guess they just need their own thread on Inspire. I don’t want to be unkind, we have all had too much of that already. I guess I do that because my father in law had the exact same thing, multiple ER visits, the ever clear EKG, always perfect enzymes, then out of the blue, he needed a quadruple bypass. After that, he developed type 2 diabetes, the meds made him too ill, he was a “good” patient, took his meds, even though they made him sicker, and passed away 10 years after the bypass, 10 years of torture for a wonderful man, so I am kind to those guys until they can find their own thread, because I understand that they are probably lost too.

    I have seen only a small bit about what you have described, I have been lucky. Like you, Inspire saved my life. Looking forward, as always, to your next posts.

    Liked by 1 person

    • Carolyn Thomas September 4, 2013 at 8:51 am #

      Thanks for sharing your experience here, Jana. Just wanted to add that “lurking” is a perfectly normal ‘new kid’ experience, not something to feel guilty about! There are online Heart Disease groups online that welcome both men and women to participate, but WomenHeart’s online group seems self-explanatory: it’s about women and heart issues. But in the troll’s case, I suspect that he would be just as disruptive in an open Heart Disease group, too. A troll is a troll no matter where you may find them.

      Like

  6. Anne September 4, 2013 at 6:56 am #

    I saw the WomenHeart discussion and the comments. Eventually, I stopped following because of the personality attacks.

    Kels had a point to make – a flamer troll who reeled you and others like a fish or a good trial attorney. Perhaps there is a bigger following of men getting their jollies than one would expect.

    Probably better approach would have been for no one to comment – pretend that Kels didn’t comment – marginalize him publicly and then request help from the administrators to remove his flaming comment as not appropriate. Handle flamers with caution because it’s like fighting with a mentally disturbed person. It’s very easy to damage your credibility. Silence is golden and certainly better than an emotional public rant.

    Liked by 1 person

    • Carolyn Thomas September 4, 2013 at 7:04 am #

      Anne, you are SO RIGHT! This troll did reel me in, and I fell for it. I tried to ignore his first few comments, but that “downtrodden women” post was the last straw. I bit – which is just what he wanted, and thus my own comment was deleted by the site’s admin team. Lesson learned.

      Like

  7. Pauline Lambert Reynolds September 4, 2013 at 6:12 am #

    I am a “quitter” and the reason is that I am not “savvy” enough where it comes to technology. I forget passwords, don’t write them down, can’t figure out how to get back to the site, etc. etc.

    Liked by 1 person

    • Carolyn Thomas September 4, 2013 at 6:58 am #

      Hello Pauline – many patients share that frustration. Sites that may appear easy (to young healthy tech-savvy folks) can seem insurmountable to others.

      Like

  8. Sunny September 4, 2013 at 6:05 am #

    I left the WomenHeart online support group for this very reason…. pre-election there was a lot of bashing going on about politics: terrible things were said about Dick Cheney and his heart transplant. No matter his politics, he is a human being, a husband, a father, and a grandfather and did not deserve the rude comments made about him and his supposed “going to the head of the list” nonsense.

    There was huge support for Obama care and caustic remarks for those who questioned the whole idea. Accusations were made that the naysayers watched too much Fox News.

    No administrators stepped in so I assumed they were on board with these comments that had little to do with heart issues. And then I watched as they attacked one woman who was so upset she said she couldn’t take the stress and wouldn’t be back. And the administrators were strangely silent as she was attacked. I decided then that this group was no longer safe and I just left.

    Liked by 1 person

    • Carolyn Thomas September 4, 2013 at 6:56 am #

      Thanks for this perspective, Sunny. Religion and politics shouldn’t be patient chat arguments – yet I’ve seen plenty of both online.

      Like

      • Dr. Barbara Keddy September 7, 2013 at 10:48 am #

        I agree that politics shouldn’t be patient chat arguments, but “the personal is political” and sadly gender issues re heart disease are definitely political. 😦

        Liked by 1 person

Trackbacks/Pingbacks

  1. Marie Ennis-O'Connor - October 5, 2014

    […] From the so-called “distressed newcomers” to the “relieved survivors” or “moving-on quitters”, there’s actually a predictable pattern to the way patients participate in online support groups. […]

    Like

  2. Mighty Casey - September 11, 2013

    […] …how online communities help patients cope, and give them the power to move on. Discover. Join. Leave. is a great journey through the life cycle of online patient groups. Some come and stay, others arrive looking for specific help, all make a contribution when they can. Peer-to-peer healthcare is a web, just like … the web. Carolyn tells a great troll-taming story, too – another terrific read. […]

    Like

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