20 essential questions to ask potential members of your online patient community

Too many online patient communities are created without the right preliminary research. The result? A ghost town. 

You can avoid that disaster by interviewing 20-30 potential members of the community first. In the interviews you have three important objectives:

  • Identify competition.
  • Find out what patients’ online interests and habits are.
  • Determine who could be founding members of your community.

Who, then, should you interview? Those patients who fit squarely within the patient profile you’re targeting for your online community.

Perhaps you have a support group already meeting around your community concept. Or you have patients who are actively commenting on your hospital Facebook page. Or simply make a list of 20-30 current or former patients. 

You can conduct the interviews on the phone or face to face. Another option is to conduct a patient focus group, but this should be in addition to the individual interviews, not instead. 

The introduction to the interview

Suppose you’re considering a bariatric surgery community. Here’s how you might introduce the concept in the interview. 

Example opening: We are considering starting an online community for weight loss surgery patients. It would be a private site that you could log into. There you could have conversations with other people preparing for their weight loss surgery, or who have had the surgery. Share advice. Give support. Ask questions. Just say how you’re feeling. Or what you’re struggling with. You could also get current, accurate information about procedures, diet, exercise, change, side effects.

Here are 20 questions to ask

Are you aware of online communities like this?

Do you belong to any? (Ask follow-up questions. It’s important to find out if there are existing online communities that already meet your patients’ needs. )

Does this sound like a community you would want to be a part of? Why? Or why not? (If no, dig deeper to discovery why. This is valuable information!)

What other options would you like to see in this community?

What would your dream community look like?

What would an outstanding community have?

What would you hope to gain from this community?

What are your biggest problems/challenges you face today?

What do you think are the biggest concerns/worries that other patients like you have?

Why would you go online to the community? Help others? Receive support? Get information? Connect with people like you? Ask questions? See what other people are talking about? Make new friends?

Do you know anyone else who would want to belong to this community? 

What would keep you coming back to the community?

How many times a week do you think you would visit this community?

How much time would you spend in a community like this?

When in your daily routine would you make time for it?

Who do you think would make the perfect members of this community?

What kind of patients should not belong to this community?

If you were to ask a question to this community today, what would it be?

Would you find this community helpful in your life?

Would you consider being a founding member of this community? 

Upcoming webinar: A vision of healthcare marketing as online community building

One of my favorite presenters is Dan Dunlop, president of Jennings.

I acknowledge my prejudice, since Dan and I partner in this wonderful work of developing online communities for patients. But it is true. Dan is warm and personable and informative and just plain smart with great stories to tell. I love to hear him talk about healthcare.

That’s why I’m excited to announce an upcoming webinar. Dan will present “A Vision of Healthcare Marketing as Online Community Building” on January 28, at 1 p.m. EST/10 a.m. PST. I’ll play the stress-free role of Dan’s webinar host! Read more

@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?

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

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