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, patient communities, Patient Empowerment, Patient Stories, tagged @bobtedeschi, @statnews, Bob Tedeschi, online patient community, patient communities, patient's voice, stat news on December 12, 2016|
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My 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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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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Patient empowerment has the potential to revolutionize healthcare, and it’s happening at a time when patients have more information at hand than ever before. Emerging as a new paradigm, patient empowerment promises to help improve medical outcomes while also lowering treatment costs.
However, in order for this concept to become a reality, people need to become more active and engaged in their health, which will, in turn, enable them to make better use of the knowledge, tools, techniques, and support available to them. From my perspective, for population health management to work, patients must take accountability for their own health. And we have to help them get there.
A bigger challenge involves organization embracing the notion of patient empowerment and embracing the patient as part of the care team. Today, I hear too many stories of patients and families still struggle to access their medical records. In that regard, we are still very far from where we need to be.
Here’s an infographic from LabFinder that introduces the idea of patient empowerment. The graphic outlines steps for taking patient empowerment from concept to practice – something many organizations currently struggle with. Enjoy the infographic.
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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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My friend, Lisa Gualtieri, PhD, ScM, a leader in the field of digital health communication, is conducting a survey for a national foundation that is interested in identifying ways to increase patient engagement.
Your responses will greatly help Lisa and her team in achieving this goal. If you’re willing to help out, I invited you to spend approximately 10 minutes to complete this survey. Analysis will be done in aggregated manner and all responses will be kept anonymous.
Here’s a small enticement: If you complete the survey before May 15, 2014 and provide your email address at the end (optional) you will be entered into a drawing for a $200 Amazon.com gift card. Your email address will only be used for the drawing.
To take the survey, please click here.
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