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.
Inspire 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.”
This 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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Posted in Online Communities, Online Health Information, Patient Empowerment, Patient Engagement, Patient Experience, tagged insights from engaged patients, inspire, inspire.com, linkedin, survey of patient members on October 21, 2015|
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The Voice of the Patient
Inspire recently published the results from the inaugural survey of its patient members. The report pulls together data from the responses of 13,633 individuals who belong to Inspire online patient support communities. They come from 100 countries and six continents around the world.
One of the most prominent findings in the study is the proactive role that these patients are playing in their own care. They are initiating discussions with their physicians about new and unexplored treatment options. In short, these patients are advocating for themselves. According to the Inspire Annual Survey, “almost 90% of all Inspire members who took the survey indicated that they ask their doctor about other potential treatment options at least once a year.” 55% of the patients reported taking another individual along to their doctor’s appointments (an additional source of support and advocacy).
The report also notes that many patients continue to struggle with the cost of healthcare:
“Financial difficulties remain a common problem and have seemingly intensified during 2014 in the U.S. 50% of patients
taking the survey cited having trouble with the cost/
affordability of treatment at some point in time. Paying for
the treatments themselves as well as supportive (OTC)
medications were the two areas patients struggled with
Further adding to the financial difficulties that so many patients have faced, 2014 was an evolutionary year for healthcare in the U.S. as the Affordable Care Act went into place. As a result of this legislation, 60% of U.S.-based respondents say their insurance premiums increased last year, another 48% saw their in-office copays increase, and 64% reported having at least one of their medications switched to a generic equivalent by their insurance company.”
Another interesting insight gathered from the study is the number of respondents who feel that they have a relationship with their pharmacist (41%) – with the vast majority feeling good about that relationship. Pharmacists and pharmacies were also reported to be an important source of information – with 25% of the respondents claiming to receive important educational information (typically medication related) from their pharmacies.
I definitely encourage you to check out the report from Inspire. As the host of so many online patient support communities, they have unique access to insights offered up by their members (our patients).
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Posted in Patient Stories, Patient-Centered Care, tagged compilation of patient stories, Experts by Experience, experts by experience 2015, inspire, inspire.com, linkedin, Scope blog, Stanford Medicine's Scope blog on March 13, 2015|
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My friends at Inspire recently published a compilation of patients’ stories titled: Experts by Experience 2015. This is their third volume in a series that reproduces patients’ stories from Stanford Medicine’s Scope Blog.
Here’s quote by Benjamin Miller from the foreword to the collection:
“Sadly, the patient still is being asked to “come” to the system rather than the system come to them. But this is changing. Indeed, there is a revolution underway that places the patient in a more opportune position for influence. Communities bring their stories, stories connected to data, to begin to advocate for a new way of delivering healthcare. In fact, this compilation you are reading is part of that revolution.”
I encourage you to download Experts by Experience 2015, and spend time with it. Share it with your colleagues. Make your day a patient-centered day.
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I’ve been on a rant about the importance of online communities for at least the last year. My friends at Inspire.com get it. They build and maintain online patient communities that are incredibly robust and thriving with activity. The infographic below depicts the level of involvement and participation that is taking place in these communities. It is time for the rest of us to get on board! The “healthcare marketing as community building” train is leaving the station.
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I’ve written numerous times about Inspire.com and the good work it does bringing the patient’s voice to the foreground. The most obvious example, beyond its wide array of online patient communities, is its partnership with Stanford Medicine. Together, the two organizations are publishing blog posts from patients who have battled chronic illness.
The big news is that last week Inspire reached the 5 million posts milestone. 5 million posts written by members – primarily patients and family members. Brian Loew, Inspire’s co-founder, wrote a blog post recognizing the achievement. It is worth reading his very brief post just to get to the comments from members of the community. If you’ve every questioned the value of online patient communities, these comments will answer that question once and for all.
Congratulations to the team at Inspire and to all of it members for creating an environment where patients can find others facing similar health issues and find support and answers to their questions. For me, the word of the day continues to be “community.”
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Posted in Cancer, epatient, patient communities, Patient Empowerment, tagged epatient, inspire, life as a cancer survivor, linkedin, online patient communities, patient blog posts, patient stories, Scope blog, Stanford Medicine, Stanford scope blog, The anxious warrior on April 2, 2013|
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The voice of the patient – we don’t hear it nearly enough. That may sound strange but it is the truth. Healthcare marketers need to open themselves up to patient stories and patient experiences. This is a huge shortcoming in the current healthcare marketing paradigm. Simply put, we don’t spend a lot of time listening to our most important constituents – patients. That two-way communication has not yet become a reality for most of us. Many patient advocates would argue that this is a challenge for all of healthcare, not just the marketers. Whatever the case, when I find an opportunity to share patient stories, I do it. This is yet another example.
As I’ve stated in the past, I am a big fan of Stanford Medicine’s SCOPE blog, and its ongoing series that features stories from patients affected by serious and often rare diseases. Stanford has partnered with Inspire to launch this series. If you aren’t familiar with Inspire, they build and manage online support communities for patients and caregivers. Go to Inspire.com to learn more about them. They are doing great work. (By the way, I have no affiliation with them.)
The latest post in the patient series is written by Dan Adams, a bladder cancer survivor. Dan lives along the Southern New Jersey Shore where he and his wife of 35 years raised three children and recently became grandparents for the first time. Dan is committed to raising awareness of bladder cancer and supporting those who are newly diagnosed through the Inspire/BCAN Support Community.
Dan shares his story which involved battling both anxiety and cancer. Here’s an excerpt from his post on the SCOPE blog:
“During the first couple of years in this war with bladder cancer, anxiety consumed my everyday living. Cancer was always on my mind, but I was unaware that anxiety was running my life. It took a long time, but eventually I learned to recognize changes due to anxiety, things that aren’t really “me.” Inattention to details, aimlessly daydreaming and becoming much more emotional were some of the telltale signs. I realized things weren’t right and I sought the professional help I needed. Thankfully, this help and the encouragement and support of a close family brought me through a very trying period.” (Source: Stonford Medicine’s Scope Blog, The road to diagnosis: How to be insistent, persistent and consistent, February 14, 2013.)
If you’d like to read the rest of Dan’s story and perhaps read other patient stories from the series, click here.
To read and/or download Inspire’s report, Experts by Experience, that includes a compilation of patient blog posts, click here. (http://www.inspire.com/static/inspire/reports/inspire-stanford-experts-by-experience-report.pdf)
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Posted in patient communities, Patient Empowerment, tagged Emory Heart Center, inspire, inspire.com, Joan Jahnke, linkedin, patient stories, Scope blog, the road to diagnosis on February 15, 2013|
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I am a huge fan of Stanford School of Medicine’s SCOPE blog, and its ongoing series that features stories from patients affected by serious and often rare diseases. Stanford has partnered with Inspire to launch this series. If you aren’t familiar with Inspire, they builds and manage online support communities for patients and caregivers. Go to Inspire.com to learn more about them.
The latest post in this patient series is written by Joan Jahnke, a retired R.N. with experience in cardiac nursing, who resides in South Carolina. She has written about her heart experiences and been active on the Internet since 2008. In the end, Joan was diagnosed with cardiac endothelium dysfunction. In her post, she gives great advice to patients who are traveling that sometimes long road to diagnosis. With the unique perspective of a clinician and patient, she says that the squeaky wheel doesn’t always get the attention:
“My advice to anyone traveling on the difficult road to a diagnosis is to not become the difficult patient – that is, the patient who doesn’t keep track of tests or medication trials as the medical record grows in size, who doesn’t return for appointments, or who disrupts an office practice and makes accusations that no one is listening to his or her complaints.”
Joan’s story is definitely worth the read. You’ll learn about her “insistent, persistent and consistent” approach – one that made her a partner in her care – and one that led to her eventual diagnosis. Her daily journaling of symptoms helped the team at Emory Heart Center reach a diagnosis. In this case, Joan was her own best advocate!
Check out the blog post and learn more about Joan’s story.
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