Building a patient community: Lessons from Relay for Life

My sister has twice survived breast cancer. My grandmother died of breast cancer and my grandfather of leukemia. My uncles of liver and bone cancer. But I never participated in Relay for Life – one of the American Cancer Society’s primary fundraising events — until last Friday 

I arrived at nearly 10 p.m. Dozens of families and friends had placed tents and canopies around the track. Children were dodging in and out of crowds. Couples walked hand in hand.

Decorated lunch sacks with lights and the names of loved ones were placed around the track. Soon it was time for the luminaria ceremony. “For our fathers and mothers… for our brothers and sisters… for our aunts and uncles, grandmothers and grandfathers… for our children… for our friends and neighbors.”

Then began the long list of names of every individual being remembered that night. The hundreds in attendance spoke in hushed tones. Children stopped running about. The sense of reverence was palpable as we slipped into our own thoughts.

Later we lit Chinese Sky Lanterns that floated free from the earth high into the sky.

Lessons about community

Is there a more powerful example of community than those attending Relay for Life? Hundreds are willing to spend all night raising funds to fight cancer in memory of loved ones.

There are some direct applications to online patient communities. When developing your community, the most critical step is to get the community concept right. If you get that wrong, no amount of effort or expense will fix it. People simply will not engage.

Here are three categories of questions you can ask to help get the concept right:

  • What will the community be about? What is the broad topic of the community? This should be clearly stated.
  • Who is the community for? Who is the community not for? Who will be the ideal fit? It shouldn’t be for everyone.
  • What type of community will this be? Is this a community of action, circumstance, interest, place or practice? Or a combination?

As you consider building your online patient communities, search for examples like this. Look for groups that are already connecting, and discover if an online community is right for them.

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