Patient Communities in Social Media


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By DJ Edgerton

If you knew that you needed to talk directly with a very specific type of person who made up a very small percentage of the overall population, what would you do? Well, clearly, you’d try to find places where they got together. No sense knocking on random doors all over the country. It’d be much more efficient to see if they were gathered someplace and go right there.

Welcome to the world of patient communities, and why they’re so important to people who work in the health care industry. The internet’s universal ability for infinte expansion means that for any condition you can imagine, there is probably a patient group online.

Here are some things to know:

Many communities were started by patients themselves, so their leadership is often extremely passionate.

Most communities, like most patient support groups, are understaffed, under-resourced, overworked – and, therefore, open to and appreciative of intelligent, respectful partnerships that help them achieve their goals.

Because they are so passionate, yet so overworked, they – rightly so – have no patience for ill-thought-out industry proposals that would be counterproductive to their goals and ideals.

Here are some things to consider:

These communities can be a hugely important venue for clinical-trial recruitment.

When product promotion is inopportune or inappropriate, don’t forget that collaborations increasing public awareness of the condition, or that might also increase patient awareness of your company, can be exactly what meets your objectives.

Even if you don’t see an immediate opportunity for partnership, go anyway and read, read, read. Sometimes working in the pharmaceutical industry separates you from the actual patients your work is helping. Reconnect with the end users of your products. See what their lives are like and what matters most to them.

Here are a few we find particularly intelligent, engaging, or otherwise interesting.

Patients Like Me and Daily Strength are wide-ranging sites each housing many sub-communities – from very common conditions, to orphan diseases affecting only a small handful of people.

Disaboom connects people with a wide variety of physical disabilities.

Real Mental Health is dedicated specifically to people with mental illnesses.

CarePages is slightly different, in that it is a venue for patients (or their family) to start blogs.

Planet Cancer is an example of a more specialized community: it’s a ribald, in-your-face, pull-no-punches community (with taglines like “Cancer: there are easier ways to build character” and “We’ve done drugs Keith Richards never heard of”) for young adults with cancer.

And for a wiki on patient communities both organic and brand-sponsored, check the Dose of Digital wiki.

Now, though: as a patient, a family member, or in your day job as a pharma professional, do you know a great patient community? Or, have you developed great tactics for working with a patient social network?

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