@GetSocialHealth podcast explores the benefits of online patient communities

Janet Kennedy is an enthusiastic champion of healthcare social media.

She hosts the Get Social Health podcast each week to inspire hospitals, medical practices, healthcare practitioners and patients connect and engage via social media.

I was fortunate enough to be interviewed by Janet for today’s podcast. She is an engaging host with an inquisitive mind — and great voice to match. Here’s the link to the podcast and some of the questions I answer.


  • How do you gauge success in an online community?
  • What do we mean by return on community?
  • What are the main benefits of starting an online patient community?
  • Can online patient communities support population health?
  • What are the most important features inside a community?
  • How important is a community manager, and what skills are essential for good community management?
  • What are the most active types of patient communities?
  • What are the four steps to creating and maintaining a successful online community?
  • What is the CareHubs community platform?
  • How long should a hospital plan to support a patient community?
  • How should patient communities respond to trolls?
  • How do online communities help patient engagement?

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Online community provides essential emotional support during patient clinical trial

The Mayo Clinic Division of Brain Rehabilitation was faced with a dilemma.

Physicians had developed an outstanding treatment protocol for traumatic brain injury (TBI) with excellent results. But many older patients with TBI live in rural areas and are unable to travel to a large medical center for treatment.

How could Mayo Clinic bring the clinical care and emotional support patients needed to their local communities?

The solution: A clinical trial that connects patients, their families and providers with specialized brain rehabilitation providers through the innovative application of an online patient community. 

Dr. Allen Brown presented an overview of the trial at last month’s Social Media Health Network annual meeting in Rochester, Minn.

How this clinical trial works

  • The trial includes TBI patients in Minnesota, Wisconsin, North Dakota and South Dakota.
  • Patients receive care in their local communities.
  • Patients designate family members or significant others to be part of the community.
  • Providers join in.
  • All participants are connected to Mayo Clinic and each other through the CareHubs online patient community software.

The CareHubs software becomes a private, secure, personal care hub for emotional and clinical support. “One of the most frequent patient requests is, ‘I wish I could talk to someone else who has this,’” explained Dr. Brown.

The secure site includes:

  • Customized introductory videos for providers and for the patient and family.
  • Question and answer section featuring specialists who answer questions, suggest treatment options, and direct patients and providers to resources.
  • Conversation area where patients and their families can share experiences with one another and provide emotional support.
  • A platform for online events, education, and presentations.
  • Extensive user-level analytics.

When the trial ends, Dr. Brown hopes the intervention will result in:

  • Better participation outcomes.
  • More integration in community.
  • Greater satisfaction with care.
  • Local providers reporting that patients are more capable because they have skills they didn’t have before.

The trial has just begun, and results won’t be tabulated for some time, but this unusual use for online community software holds great promise for patient care. (Download a PDF summary of the clinical trial.) 

Thinking image designed by Jens Tärning from the Noun Project

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Study: The striking difference between managed and unmanaged online patient communities

Our partner Dan Dunlop at Jennings posts a fascinating study on the difference between managed and unmanaged online communities. 

It’s the story of two online communities, launched within seven months of each other. These communities are sponsored by hospitals located in the same region of the country, only 49 miles apart.

One of the online communities has been actively nurtured and monitored daily by a dedicated community manager, while the second community was left to operate on its own. The result?

The community that was actively managed has experience nearly three times the volume of visitors and has become a great asset for its hospital sponsor. The other community has languished and is barely clinging to life.

This is definitely a cautionary tale! To read the full story, read A Tale of Two Online Communities

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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.  

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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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