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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Tuesday was a remarkable day. For me, it started out in the mountains of New Hampshire at the New Hampshire Hospital Association’s Annual Meeting. I was invited to introduce the day’s keynote speaker, ePatient Dave (Dave deBronkart). This is a man who I have followed for many years on social media, and someone I hold in high regard. He, and others in the ePatient movement, has influenced the way I think about healthcare and healthcare marketing. Dave’s presentation was outstanding. He certainly did not disappoint.
Then, later that day, on Tuesday evening, the weekly healthcare leadership Twitter chat featured a discussion on “Ten Years of ePatient Emergence.” The chat’s guest host was none other than ePatient Dave! Click here to read the blog post that went along with Tuesday night’s chat. By the way, the analytics for the Twitter chat were through the roof! Check out the numbers to the left and below (courtesy of Symplur): more than 2,500 Tweets with nearly 23 million potential impressions. (Click on the image below to enlarge.)
During the #HCLDR chat, participants were asked to name the epatients that they follow on Twitter. I thought it would be helpful if I shared some of those Twitter handles with you. Following these epatients on Twitter is a great way to learn more about the epatient movement and the perspective of the patient. (Some listed below are not ePatients, but are patient activists, advocates or evangelists.) The list below is in no way complete and the Twitter handles appear in no specific order.
The Society for Participatory Medicine
What is an ePatient? – Stanford Medicine X
In-Depth: Rise of the ePatient Movement
Dave deBronkart: Meet e-Patient Dave – TEDxMaastricht
@aaronecarroll (also MD)
Resources: If you are interested in learning more about the epatient movement and patient empowerment, here are links to a few resources, including some blog posts I’ve written previously.
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Posted in Narcissism in Healthcare Marketing, Online Communities, patient communities, Patient Engagement, tagged community building in healthcare, Healthcare Marketing, jane brubaker, linkedin, narcissism in healthcare, Narcissism in healthcare marketing on November 18, 2015|
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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
Consumers 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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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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My sister Kerry has been undergoing treatment for Stage 3 Ovarian Cancer for the last several years. She has done remarkably well (multiple rounds of chemo and multiple surgeries) and has exceeded the expectations of her medical team. When she was first diagnosed, she was treated at UCSF Medical Center in San Francisco, and felt like she was receiving exceptional care. Later, she moved to Florida to be closer to my parents, and began treatment at a local community hospital that has a comprehensive cancer center.
Over the last year, Kerry has expressed doubts about the sophistication of the cancer program at the local hospital and wondered if they were doing everything that could be done for her. Among other things, it concerned her that the cancer center had no clinical trials for ovarian cancer. She also felt that their diagnostic equipment was outdated, given what she’d experienced at UCSF. So, for the last year, I’ve suggested that she visit a major cancer center for a consult and a review of her treatment plan. At the very least, this would help to put her mind at ease. She looked at a number of different options, including a few that I recommended (MD Anderson, Duke and UNC), and surprised me a couple of weeks ago by announcing that she was heading to meet with the team at MD Anderson Cancer Center in Houston. Right away! I was elated to hear the news, in part because I have worked with MD Anderson and hold the organization in high esteem, and in part because Kerry was taking charge of her situation rather than simply let things happen to her.
Last week Kerry headed out to MD Anderson. Before leaving she seemed nervous and apprehensive. I called her on her second night in Houston and she was thrilled with her decision. She sounded empowered. She was glowing. Suddenly she had the resources and expertise of a major cancer center at her finger tips. And they will remain a resource long after she returns to her home in Florida. Prior to this, it seemed that she felt trapped and uncertain of the path she was traveling. That’s never a good thing, particularly when it is your life that’s on the line.
So today I am celebrating the power of an informed second opinion. And I am grateful to everyone at MD Anderson for taking such good care of my sister. The care provided at most community hospitals today is solid (exceptional in some cases), and certainly not every illness requires a trip to an academic medical center. But, when the need arises, healthcare consumers should feel comfortable seeking out the expertise available within major academic centers. It is not a betrayal to seek out a second opinion. In fact, it can be a smart thing to do. Programs have limits and strengths. But not all programs are good at encouraging patients to seek out other options with greater resources and/or expertise in a specific arena. In those cases (and many others), the patient has to be his or her own greatest advocate, get educated and seek out alternatives. Power to the patient!
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Looking for an event to attend in late September? Or perhaps your organization, like so many others, is chasing the holy grail of “patient engagement?” On September 30-October 1 in Bethesda, Maryland, the ENGAGE forum will discuss the leading innovations and latest strategies in improving patient care and healthcare delivery. MedCity ENGAGE is an executive-level event featuring the most innovative thinking from payers, providers, policymakers, health IT and beyond to highlight best-in-class approaches to one of the biggest challenges in healthcare: patient engagement. It will feature speakers discussing the current attempts to innovate in care delivery and reimbursement, along with the innovations that will form the backbone of technological infrastructure.
According to MedCityNews, the producer of the Engage forum, attendees can expect to gather a number of take-aways, benefits and insights from the event:
- A better understanding of the current care environment and the major policy and market drivers behind care innovation
- Perspectives from federal policy leaders on future government support of patient engagement
- Perspectives from health leaders on the business case for exceptional patient engagement
- Insight from engagement experts from a variety of different fields and how to apply those principles to healthcare
- Access to innovators “in the trenches” and demonstrations of the latest technology platforms to communicate with and encourage patient behavior.
For information about the event, go to: http://events.medcitynews.com/engage/
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