Archive for the ‘patient communities’ Category

It’s no secret that I am a big fan of Inspire, the social network for patients. In 2014, I organized a patient panel for the annual NESHCo conference to showcase the role that online communities played in the lives of these individuals and their families. I invited Amir Lewkowicz, co-founder and Vice President for Partnerships at Inspire, to join the conversation and serve as a panelist. Amir was a great addition to the group.

Earlier this week, Inspire announced that it reached the milestone of one million registered members.

screen-shot-2017-02-09-at-8-38-57-amInspire is known for not just the size of the community but for the activity of the patients and caregivers interacting in more than 200 online groups. Last year, Inspire reached another milestone of one billion words written by its community members.

“The rate at which members are finding and joining Inspire is accelerating exponentially,” said Richard Tsai, VP of marketing at Inspire. “Patients and caregivers across several thousand reported conditions are writing about their experiences, and generating relevant language that others who are facing similar experience can find.”

screen-shot-2017-02-09-at-8-45-00-amThis sharing of information can be particularly useful for rare disease patients who often have trouble getting an accurate diagnosis, and for cancer patients who are in dire need of support to make the best possible treatment.

Congratulations to my friends at Inspire. You are doing amazing work and have truly inspired me. You’ve also shown me the potential for effective healthcare marketing. Community building is the way!

In closing, here’s a brief graphic from Inspire that shows some of the benefits of online communities to their members (patients).


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screen-shot-2016-12-08-at-1-35-22-pmMy friends at Inspire.com sent me a link to this amazing article in STAT. The story is by Bob Tedeschi (@bobtedeschi).  Bob is a senior writer @statnews and focuses on patient and end-of-life stories. This article is titled “After he was gone, a shy man comes to life in words left behind.” It is remarkable. In short, this is the story of Stephen Wheeler, a man diagnosed with non-small cell lung cancer, and the important contribution he made as an active member of online patient communities during his life. Much of this was discovered by his family after his death. They are now in the process of curating more than 1,000 pages of posts from Bob.

Although it is cliche to say that this is a “must read,” I highly recommend reading this story. It will give you a clear understanding of the role that online communities play in the lives of patients, and will demonstrate just how much patients value the opportunity to share with one another and to be heard. You’ll also see how Bob’s posts touched the lives of other patients facing a cancer diagnosis.

If you’re not familiar with STAT, it is a “new national publication focused on finding and telling compelling stories about health, medicine, and scientific discovery.” (STAT website)

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screen-shot-2016-11-30-at-11-21-31-amThe best way to understand how to successfully manage an online patient community is to participate in one. Be a voyeur. Watch. Listen. Observe. And it doesn’t have to be a patient community; any online community will do. My daughter is a freshman at the College of Charleston and my wife and I have used the parents forum to get acclimated and learn important details about campus life (teenagers aren’t always good about sharing important information). As someone who moderates online communities professionally, participating in the online forum at College of Charleston has been an education. It has also been an affirming experience.

What I admire most about the people who manage the community and moderate the conversation is the patience and kindness with which they deal with worried, aggravated, and frustrated helicopter parents. As an observer, I am stunned by the mundane questions parents post on the forum. “Where is the bus station located in Charleston?” “How can my child get from the airport to their dorm?” “When is fall break?” Most questions could be answered in 10 seconds if the individual used Google or simply visited the College of Charleston website. And people keep asking the same questions over and over, rather than taking a second to review old conversations on the forum.

But the group moderators deal with the questions in a positive and helpful manner, never showing frustration. They are respectful and never cast judgment on the individual asking the mundane question. That’s exactly what it takes to be a successful online community manager.

Another element that contributes to the success of the community is the cohort of parents (two or three) who consistently chime in with helpful advice for the parents posting questions. I don’t know if these are paid Ambassadors or just extremely kind and helpful individuals. Whatever their status, they are the informal group leaders and familiar voices that can be counted upon to share their knowledge. Every successful online community has these leaders who step up and take it upon themselves to keep things moving in a positive and helpful direction.

Oh, and by the way, they talk about healthcare on the forum and parents ask for physician recommendations. This happens quite often. And it happens at nearly every college and university in America! Here’s one example looking for two specialists:


Check out this response to a parent’s request for recommendations for an orthopedic surgeon. The response is coming from a fellow parent who took the time to compile all the information below:

screen-shot-2016-11-30-at-6-29-17-pmscreen-shot-2016-11-30-at-6-32-17-pmThese online conversations are taking place and most of us are unaware. A good social media audit will uncover many of these platforms where conversations about health and wellness are happening.

Just as an aside, College of Charleston also has a family blog that I’ve found to be an excellent resource.



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Screen Shot 2016-05-25 at 10.37.58 AMFor me, one of the highlights of the Healthcare Marketing & Physician Strategies Summit this week came in the form of presentations from Dana Lewis (W2O Group as Director for MDigitalLife) and Margaret Coughlin (Boston Children’s Hospital), both of whom addressed the importance of online patient/family support communities. You heard me, online communities!

Over the last couple of years I’ve written more than a dozen blog posts about the relevance of online communities; written several articles for industry publications; and spoken on the subject at many healthcare marketing conferences. (If you’re interested I’d be happy to send you the short ebook I wrote on community building in healthcare.) Now I feel vindicated after hearing Margaret and Dana present at #HMPS16. Margaret shared the story of Boston Children’s online community for patients and families of their heart center. It’s a great success story with real ROI that can be attributed to the community. Meanwhile, Dana spoke about a variety of online patient communities, with particular emphasis on communities for Diabetes patients. She also mentioned the #BCSM community. If you aren’t familiar with the Breast Cancer Social Media community, you should definitely check it out!

It goes without saying that I am a believer in the relevance and importance of online communities when it comes to patient engagement. Below is a very informal video I made a couple years ago about my vision for online communities in healthcare. I was vacationing in the Blue Ridge Mountains, so please don’t judge the production quality. (It was just me and a video camera.) It is only 5-minutes long and will give you a great introduction to why I think online communities are so important to what we do as healthcare marketers. Enjoy!

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My friends at Inspire.com drew my attention to an article posted on Philly.com about people’s experience living with rare diseases. The article, “Patients talk about the frustration and loneliness of rare diseases,” shares verbatim responses from individuals who belong to rare disease communities hosted by Inspire.com.

For those of us who work in healthcare marketing, sometimes the voice of the patient is too distant; and often there are louder voices with which we contend. I’ve always believed that listening to patients’ first hand accounts of their experiences will make us better communicators and marketers, and make our organizations better healthcare providers.

I strongly recommend you check out this story on Philly.com. If nothing else, it will remind you why what we do is so important, and why we must continually encourage our organizations to get better.

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(This is a brief excerpt from an article I wrote that appeared in the November issue of eHealthcare Strategy & Trends. There’s a link below to access the entire article. The piece is titled “Community Building vs. Narcissism in Healthcare Marketing.” My thanks to Jane Weber Brubaker for her editing prowess!)

Marketing “With” Consumers, Rather Than “At” Consumer

Screen Shot 2015-11-17 at 1.43.49 PMConsumers today expect to be participants in marketing. They engage in the experience. They follow, like, tweet, share, pin, snap, comment and post. Consumers take in information on multiple devices and platforms, at the time and place of their choosing. Their attention is fragmented and they are driven to seek out the information they desire – on their terms. So how do you get them to stop for a moment and engage with your information?

Communities Based on Shared Interests
You create community. A fundamental role of the contemporary healthcare marketer is to create safe environments where consumers and patients can have health conversations, access quality health information, meet our clinicians, and engage with others who are facing similar health challenges.

As human beings we are naturally drawn to others who share our interests. Think
about that initial conversation when you meet someone for the first time. Often that conversation is a search for common ground. Shared interests, once they’ve
been identified, are the foundation for a relationship.

Building Blocks of Community
Most of us already know how to build community. There are basic principles
that we should adhere to whether we’re creating community via a Facebook page,
Twitter feed or any other platform. (continued…)

(To read the rest of this article, published in the November issue of eHealthcare Strategy & Trends, go to http://ehealthcarestrategy.com/lp-community-building-vs-narcissism-healthcare-marketing-4220/

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Today I am traveling to Cleveland, visiting the Cleveland Clinic, and speaking at the 7th National Conference on Next Generation Comprehensive Breast Centers of Excellence. I’ll address the important role of online communities for patients and families who are dealing with breast cancer. Most of the presenters at this conference are top oncology program administrators and executives. Hopefully the group will find my talk to be a refreshing change of pace as most of the presentations will deal with optimizing patient care, enhancing workflow and improving the efficiency of these programs. In short, what does it take to become a Comprehensive Breast Center of Excellence?

I look forward to sharing my thoughts with this audience. My guess is that the whole idea of “healthcare marketing as community building” (my mantra) will be something new for these professionals. Although, it is worth noting, that the breast cancer arena has been fertile ground for the development of online patient communities – including the well-regarded breast cancer social media #BCSM Twitter Chat that is co-moderated by my friend Alicia Staley – also known as the Awesome Cancer Survivor!

I’ll do my best to tweet from the conference and share my learning.


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