Engaging with communities on Inspire: Inspire’s Ostomy Support Community

Engaging with communities on Inspire:  Inspire’s Ostomy Support Community

Ostomy surgery is a procedure performed on people who have a diseased or malfunctioning colon, small intestines or bladder. After the procedure, bodily wastes – either urine, feces or indigestible food – leave the body through a created opening in the abdomen, called a stoma. Waste is collected in medical appliances.

Bearing this significant change in basic bodily functions, coping with and accepting this transformation requires support. Providing this support is the Ostomy Discussion Community on Inspire, an example of a successful condition-specific community.

The community began in 2010 and soon after, a medical appliance company showed interest in engaging with members. As the leading healthcare social network, Inspire’s research and engagement platform delivers permission-based access to patient populations. And a significant number of Inspire’s members opt-in to research and engagement opportunities, for instance, 81% of patients interested in psoriasis have opted-in for targeted information.

Four Benefits of User Generated Content Using Inspire Insight

For medical device manufacturers, user generated content has significant value.  This community discusses survivorship: living with a stoma over a lifetime. Stomas change, skin around the stoma changes and patients need to adjust and deal with these transitions sometimes on a daily basis. User Generated Content (UGC) provides significant details, including life-hacks, which have value to companies.

1) First, UGC and surveys to members who opt-in, provides companies with greater understanding of both positive and negative aspects of having undergone this surgery.

For instance, members ask about appliance leaks. This member wanted to know what to do immediately after surgery.

Can someone please help with advice on leaks. I’ve had my ileostomy since ____. I’ve gone through so many bags including being in the hospital with them all busting out the sides… the smell is just atrocious and makes me sick. I have nausea now and [throw up]…I’m desperate and scared and don’t know what to do. nothing we have done has helped. ”

They received reassurance that they were not alone in having problems with leaks after surgery and learned from several suggestions provided by others with ileostomy.

2) Second, companies obtain insights into usage of products gleaned from UGC as well as ideas for changes or new products. MacGyvering and other life hacks are part of the rich content available to companies that engage with Inspire members.

For example, members typically discuss products and what works for them. In this case, a member wants information on other’s strategies when changing their appliance in order to deal with leaks.

“This will be my 4th time today changing my appliance. It keeps leaking on the right side. My question–do I have to remove ALL of the old paste/ring? I get as much off as I can, and I wash and wash and wash my skin. Still it breaks down. And quickly. Everything was fine until I started trying to put it on differently. Now neither my old way nor the new way will work. What do I do???”

Other members recommended:

“I…suggest you wear 2pc appliances so that you can wear a [Product Name] belt. Due to the location of my latest stoma I cannot get more than 30-45 minutes wear time w/out one.”

3)  UGC provides significant intelligence on competitors’ products.

Another addressed the cleaning problem.

“I do try to get most of the sticky stuff off when changing, but I’ve also heard that keeping some of the stickiness is ok and even helps the new wafer to stick better. I use [Product Name], and [Product Name], so there’s a lot of stickiness going on. I found that if I first scrape the bigger globs off and follow up with adhesive remover, letting it sit for awhile, then follow up with my washing process, I get most of it off. I get 4 days wear before the wafer material seems to start breaking down.”

4) Finally, as the above examples illustrate, UGC delivers information on opportunities for specific education on products and services.

Using Inspire Promote

The medical device company engaged in exclusive banner ads and targeted emails to increase brand, product and services awareness. Through working with medical device and other life science companies, patients gain trust in these organizations.

Continuous patient engagement in a safe environment is a significant benefit of having a dedicated community on Inspire. Engaging with the community not only helps patients by giving them up-to-date information  – but it also provides medical device manufacturers and pharmaceutical clients opportunities to incorporate the patient’s voice in appliance or treatment development. The synergies and special features of engaging with a community provide significant and strategic value to help life science companies achieve their short- and long-term marketing, research and access goals. For more information on Inspire Launch click here. For more information on Inspire Promote and to learn more, click here.

For more on the Ostomy Support and Discussion Community on Inspire, see Video Vignettes: Through Their Own Eyes: Living with Ostomy. Our case study, Engaging with communities on Inspire: Inspire’s Ostomy Support Community, explains more about this community’s growth and activity.

See our case study “Engaging with communities on Inspire: Inspire’s Ostomy Support Community”

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