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Posts Tagged ‘online patient communities’

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 2016-05-25 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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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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Respected healthcare researcher Susannah Fox says that “the most exciting innovation in health care today is people talking to one another.”  My colleague Dan Hinmon and I agree. That’s why we have created our bi-monthly webinar series on the benefits of developing online health communities. And we do more than talk about the benefits; we give a lot of how-to information that should help anyone interested in starting their own online health community.

It is our firm belief that online patient communities are one of the most powerful ways to help people connect with one another and share information. Dan Hinmon will explain how in our free March 11th webinar: “People to People: Improve health, build loyalty, and personalize your marketing with online patient communities.” I’ll be serving as the moderator for this webinar.

 You can read more about the webinar in Dan Hinmon’s recent blog post. Or you can go straight here to register.  If you can’t attend the live webinar on March 11, be sure to register anyway so we can send you the link to the recorded webinar to view at your convenience.

 If you’re considering launching an online community and want to avoid creating a ghost town, read the single most important thing you should do in this post from our presenter, Dan Hinmon: “Start your online community on the right foot.”

We hope you’ll be able join us for the March webinar.

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Here is the recording of the webinar I had the pleasure of moderated yesterday. My friend Dan Hinmon of Hive Strategies was the lead presenter. The topic was “Look Before You Leap: Launching Online Patient Communities.” This is a great introduction to the planning that needs to be done prior to attempting to start a new online patient support community. Enjoy.

 

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Screen Shot 2014-07-28 at 5.03.14 PMA decade ago, Jennings (my company) developed its first online patient support community – NCCancerStories.org – a virtual gathering place where patients and prospective patients could connect and share their experiences.

Since then, we’ve developed dozens of online communities in a variety of forms, including hospital sponsored blogs, social networks and freestanding communities. We’ve dedicated ourselves to developing communities where patients, family members and healthcare consumers can visit with one another and gather credible health information, share their stories, interact with others facing similar circumstances, access health resources, learn about hospital services and engage clinicians.

Today we are taking our interest in the development of online patient support communities to a new level with the announcement of our partnership with Hive Strategies and CareHubs. This is a relationship we’ve worked on behind the scenes for many months and it is exciting to see it come to fruition. Below is the body of the press release that we’re sharing with media outlets over the next few days. After reviewing the press release, if you have any questions, please feel free to leave a comment or shoot me an email: ddunlop (at) jenningsco dot com.

 

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FOR IMMEDIATE RELEASE

New Partnership Helps Health Systems
Create Effective Online Patient Communities

September 30, 2014 – A new partnership announced today between Hive Strategies (McMinnville, OR), CareHubs, Inc. (San Francisco, CA) and Jennings (Chapel Hill, NC), brings the healthcare industry easy access to affordable, HIPAA-compliant-ready online patient support communities.

CareHubs offers the leading private-label, online patient community platform available today.  Their customers include Arnold Palmer Hospital for Children, the Australian Private Hospitals Association, Blue Cross Blue Shield Ventures, Health 2.0, Mayo Clinic, and many others.

“Online patient communities provide a win/win opportunity for hospitals,” said Dan Hinmon, Principal at Hive Strategies. “Done right, these communities result in better health, lower costs and greater patient loyalty. We want to help hospitals and health services do these communities right.”

Together, Hive Strategies, Jennings and CareHubs provide the full continuum of expertise required to plan, build and successfully manage online patient support communities.

“We want to help involve patients, their caregivers and families in ongoing conversations about health, wellness, prevention and lifestyle modifications,” says Dan Dunlop, CEO of Jennings. “Building consistent relationships between the patient and provider delivers real value to both the patients and the healthcare organization.”

“Healthcare providers are under intense pressure to ‘do more with less,’ but securing sensitive data, insuring high-availability and performance,  and adhering to regulatory compliance requirements such as HIPAA and CMIA are expensive and time-consuming prospects” adds Chris Williams, CISO of CareHubs.

“Our experience handling complex security and compliance standards, coupled with our understanding of the many technical requirements that come with them, means that our customers don’t have to spend time managing technology infrastructure.  This allows them to focus on what they do best:  engaging their patients and supporting their communities.”

Online patient support communities are an important tool for healthcare organizations now facing the challenge of population health management. “Vibrant, well-managed online patient communities can help patients achieve better health outcomes, reduce the cost of care, and build deeper relationships between prospective patients and the healthcare provider,” says Dunlop.

These are all welcome outcomes for healthcare organizations facing a change from the traditional fee-for-service payment model to a more value-based model that brings more risk for the provider. The ideal outcome in this new healthcare environment is healthier, more engaged patients who adhere to a treatment regimen and actively participate in the management of their health.

“The notion is simple yet revolutionary,” explains Dunlop. “I call it return on community. Make an investment in your community, and you will realize a return on that investment.”

For more information about this new partnership, or to learn more about online patient communities, please visit the partner websites at http://www.HiveStrategies.com, Jenningsco.com, or CareHubs.com.

 

 

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Screen Shot 2014-08-04 at 5.26.37 PMI meet a fair number of social media haters. It is a fascinating phenomenon. For some reason people have a visceral reaction to social media. On the business side of things, we’ve learned that in marketing discussions we will often get a better response if we refer to “digital media” rather than social media. Unfortunately, for many people, when you mention social media and social networks their minds immediately go to “that group of activities that is a huge time suck and is of no real value.”

I know, beyond a shadow of a doubt, that people find community within social networks. There is research that substantiates the fact that when people interact on social networks, their bodies emit oxytocin, the same chemical that is produced when close friends share a great hug. (Check out the research of Dr. Paul Zak.)

“Interactions on Twitter and Facebook seem to lead to oxytocin spikes, offering a powerful retort to the argument that social media is killing real human interaction: in hormonal terms, it appears, the body processes it as an entirely real kind of interaction.” (Source: “Meet ‘Dr Love’, the scientist exploring what makes people good or evil,The Guardian, Sunday 15 July 2012)

Online, people seek out communities of shared interest. These are niche communities made up of individuals who share certain commonalities. When it comes to health, those commonalities could include a chronic condition, rare disease, terminal illness or interest in fitness. But for those of us who don’t belong to health-oriented online communities, we can see the same phenomena at work on our Facebook pages and Twitter feeds, just to name a few. (I also see it on Instagram and LinkedIn, and to some degree on foursquare.)

Proof

I promised my wife that I wouldn’t write any more blog posts about my father and his recent death. That pretty much guaranteed the fact that I would mention him in at least one more post! If ever there was a question about whether all of this online activity truly results in community-building, watch what happens on Facebook when a friend of yours has a loved one pass away. The outpouring of support is remarkable.

Having only 271 friends on Facebook is a testament to the fact that I am highly selective when it comes to accepting friend requests. So it was remarkable that, when I first shared news of my dad’s death, the initial post received 71 comments. These weren’t just “likes.” These were people who took the time to write a comment and express their condolences. Similarly, dozens of online friends left comments on my blog to share their support. And it meant a great deal to me. The support was immediate and heartfelt.

People will argue that many Facebook friendships and online relationships are superficial. That is true. The online world is very much like the “in person” world (although I am not a fan of the distinction). Each community, no matter how large or small, is made up of a number if individuals with some common interest. However, one thing you can count on is that the level of involvement on the part of various individuals will vary greatly. Some people are very active in their communities while others play a more limited role. There are leaders and there are those who are just find living on the periphery. Why would online communities be any different?

Screen Shot 2014-08-04 at 5.45.16 PMWhen I first started using social media there was a lot of talk in the media about the “cocooning” of Americans. At the time, much of that was attributed to the impact of television, but I also connected the idea with the impact of emerging social networks. I can remember being concerned that these new technologies would exacerbate this cocooning phenomenon. The impact would be further isolation and less social interaction. It is now my perspective that, at least in my experience, digital media have allowed for enhanced social interactions and allow for a greater sense of connection, rather than isolation. Through social media niche communities are given an opportunity to flourish in a way that was very difficult in the past. Using the example of my father’s death, in the past most of the people who I engage with on Facebook would have had no way of knowing that he had passed away and that I was going through a tough time. The same would be true if I were to suddenly find myself dealing with a chronic illness. In the old days, how long would it take for people to find out? Today, if I choose to share it online, dozens of friends within my community will immediately have the opportunity to lend me their support and advice.

Don’t Hate

Sometimes we are all too quick to judge phenomena that are new and unfamiliar. Those who demean “social networks,” “social media,” “online communities” and online friendships, have not taken the time to examine the power of these platforms and the interaction that takes place within them. Online patient support communities, above all, fill so many important needs of their members. I’m excited to play a role in bringing online health and patient communities to those seeking support, guidance, friendship, camaraderie and health resources.

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