Before you launch an online patient community, get out of your healthcare box

There are plenty of online patient communities in healthcare, but most of them are sponsored by national associations or supported in part by sharing data with pharmaceuticals.

For a number of reasons, health systems have been slow to develop these branded online platforms. But in the product and service worlds online communities are thriving all around us.

Danya Cheskis-Gold is the Director of Community at Spark Capital, a venture capital firm whose community includes startup founders and employees from companies like Tumblr and Twitter. She was recently profiled in a blogpost for CMX and shared six valuable lessons that directly apply to launching online communities.

I’ve adapted some of her ideas for healthcare.

Get out of the building 

Before you begin a community, get outside your healthcare box. Put yourself in the mind of your patients and ask yourself, What are they really interested in? What information do they need to better manage their illnesses? What kind of support do they want? It’s not about you.

Identify your market 

Make sure you’re very clear about exactly who should be part of the patient community. Consider age, gender, location, illness, interests, comfort with technology, and more. Once you think you’ve identified the right market, spend time interviewing the patients you’re targeting to discover if they’re really interested in your community.


With your first members, give your ideas a try. Set specific metrics to monitor. See how they work. If things aren’t working, it’s time to iterate.

Know your hypothesis

When you’re investigating something new with your patient community, start with a clear solution.

Ask lots of questions

You’ll need to dig deep to understand the issues from your members’ perspectives. If you’re gathering information by phone or face to face, keep asking why until you get to the heart of the issue. 

Make your survey responses actionable

Make sure that the responses you gather lead to actionable items. What specific changes will these answers lead to? 

Online patient communities can be powerful tools to lead patients to better health at lower cost while developing greater loyalty. However, it’s critical that you start with the right concept and iterate as your community grows.

Following these key steps will help you create a community that delivers the results you want – for your hospital and for your patients.  

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.

How brain science and the study of habits apply to online patient communities

I’m a bit hesitant to admit it, but the first thing I do when I get up in the morning is check my email.

A few times during the day I check Facebook — partly to manage client accounts and partly to keep up on friends and family. And usually before bed I’ll check my AP news app for the latest news. 

Why do I do these things? Largely, because of habit. But there is a reason why I’ve developed these habits. Beyond personal interest, email, Facebook and even the AP app follow proven habit-building techniques, brilliantly and simply detailed by Nir Eyal in his book Hooked: How to Build Habit-Forming Products. 

The same lessons can be applied to online patient communities. Research has found it takes an average of 66 days for a behavior to become habitual. You can see why the first two months after a member joins your community are crucial.

That’s why at Hive Strategies we help our clients establish a series of science-based triggers, actions and rewards that keep newcomers hooked for the first two months. Once visiting the community becomes a habit, there’s a very good chance they’ll stick with it.

This plan is something our clients continually measure and refine.

Brain science and the study of habits

Our approach is based on brain science and the study of habits. View this insightful slideshare that Eyal developed to cover the key principles: trigger > action > variable reward > investment and the cycle repeats. Fascinating! 

Two simple tips can help you dramatically Increase the participation rate of your new online community members

One of the top goals of successful online communities is to engage new members to keep them coming back. Research shows that two specific tips can significantly increase the return rate of community members.

That’s part of the message Paul Resnick shared in a recent webinar sponsored by FeverBee, the online community Guide. Resnick is professor at the University of Michigan’s School of Information and author of the book Building Successful Online Communities.

First, greet the member.

Make sure that the new member feels welcome. Your welcome email should be friendly and personable. If the member asks a question or comments on a thread, respond quickly.

Second, ask the member to do something specific.

This request should be consistent with the level of knowledge and skill your member has at this point. This could involve completing the member profile, or reading and responding to a recent post. Once members do something that helps the community, they begin to feel involved and validated.

“Ask and ye shall receive,” says Resnick. “Ask people to do stuff, don’t just wish it.” In one survey, there was a 5 times increase in activity when individual members were asked to do something.

And don’t just ask the group to do something. The power of your invitation decreases in relationship with the number of people being asked, so the very best invitation focuses on one person. Instead of asking your caregiver community, “Can anyone share how they cope with a parent with dementia?” ask, “Karen, can you tell us how you cope with your mom’s dementia?” 

A bonus tip

You can take these tips to the next level by incorporating the invitation in your welcome email. Instead of saying, “Visit our breast cancer treatment section to share or comment,” say “right now you can help answer Jeri’s question about best energy-boosting foods while going through chemotherapy.”

Apply these two tips to your new member on boarding and you’ll be surprised what a difference it can make in community involvement.

Want to Create a Successful Online Patient Community? Start With These Four Research-Based Books

If you’re a marketer approaching online health communities from a purely design perspective, you’re making a big mistake.

I know where you’re coming from. I love websites with big, beautiful photos, contemporary color palettes, bold headlines, and lots of white space. 

The problem is, those features often have nothing to do with engaging patients, families, and care-givers in online communities. And, in fact, big beautiful photos and bold headlines can actually kill your community activity.

What makes some online communities a success, while others fail miserably? 

Some of the world’s most active online communities in the world have dull and boring design. (Check out this site that had 600,000 unique visitors last month.) So what makes them work?

Turns out there has been a lot of great research on that topic.

Here are four excellent books you should read to discover the research-based keys to community success.

Buzzing Communities: How to Build Bigger, Better, and More Active Online Communities, by Richard Millington.

Millington provides excellent advice about how to prepare, launch and manage online communities, including important tips on design and the most important functions to measure and improve.

Cultivating Communities of Practice, by Etienne Wenger, Richard McDermott and William M. Snyder.

Communities of practice are online communities that connect together people in a similar industry or profession. Although the book focuses on industry, the principles easily translate to communities of medical specialties such as radiologists or all members of a large medical staff.

Building Successful Online Communities: Evidence-Based Social Design, by Robert E. Kraut and Paul Resnick. 

Kraut and Resnick are professors at Carnegie Mellon University and the University of Michigan, respectively. Their extensive research pays off in this book that covers everything from starting new online communities to regulating behavior.

Hooked: How to Build Habit-Forming Products, by Nir Eyal with Ryan Hoover.

Online communities quickly become graveyards if members don’t keep coming back. But how do you help them make community involvement a habit? The fascinating answer to that question is answered in this completely engaging book.

Now you can apply your beautiful design concepts! 

Once to understand the basics of online community, you can take your beautiful design concepts and apply them in a way that engages your members and keeps bringing them back. Your communities don’t need to look like this.

Once you study the research, I can promise you that your designs will be very different than what you have in mind today.