Tag: WPLongform

What really goes on in your friendly online patient group

~ Carolyn Thomas ~ 33 Comments

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

It turns out that online patient discussion forums may not all be the noble grassroots support groups that I once believed them to be. For example, unless they are small independent online sites, or have secure academic, government or clinical funding  (like Virtual Hospice, which operates its active end-of-life care community thanks to ongoing financial support from the Winnipeg Regional Health Authority and Cancer Care Manitoba), the site owners of most major online patient support groups are figuring out how to “monetize” their work. That’s how biz developers talk . . .

Make no mistake, my heart sisters: few online site owners (except for individual patients hosting those smaller private forums) are running a feel-good charity for us patients purely out of the goodness of their hearts.  Continue reading “What really goes on in your friendly online patient group” →

Online patient groups: why so under-used?

~ Carolyn Thomas ~ 17 Comments

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)

  Continue reading “Online patient groups: why so under-used?” →

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

~ Carolyn Thomas ~ 21 Comments

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.    Continue reading “Discover. Join. Leave. The life cycle of online patient groups” →

Diagnosed with what? Brugada Syndrome?!

~ Carolyn Thomas ~ 56 Comments

by Carolyn Thomas  ♥ @HeartSisters

Alicia Burns“A lot of people ask me how I knew something wasn’t quite right with my heart. It’s hard to answer, because I’ve suffered with palpitations and chest pain for years, but they didn’t concern any of the cardiologists I saw.”

In fact, Alicia Burns’ doctors didn’t get concerned for 14 years, despite many consultations and tests for her distressing and ongoing symptoms.

Alicia, now a 34-year old mother of five children, tells the harrowing story of the moment she first heard the words Brugada syndrome.  Continue reading “Diagnosed with what? Brugada Syndrome?!” →