Posts Tagged ‘inspire.com’

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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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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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.

Screen Shot 2015-10-21 at 8.20.03 AMOne 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
the most.

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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Screen Shot 2015-03-12 at 10.03.16 AMMy 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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My friend John Novack, who works for Inspire.com, sent me a link to this awesome video from the SCAD Alliance. The Scad Alliance exists to facilitate collaborations among specialists to improve the diagnosis, care and outcomes of Spontaneous Coronary Artery Disease. Years ago I met some of the amazing women behind the SCAD Alliance at a Mayo Clinic Social Media Summit. The women I met were Katherine Leon and Laura Haywood-Cory, and the story of how they came together and organized a movement on behalf of SCAD patients was truly remarkable. Their efforts led to “patient-initiated research” at Mayo Clinic. (You can read more in a report by Inspire titled “SCAD Ladies Stand Up.”) Today, Katherine Leon serves on the board of directors of the organization. When I met them I was so moved by all that they had accomplished, I wrote a blog post in an attempt to share their story within the healthcare marketing community. Here’s a link to that post.

The SCAD ladies have come a long way since I first met them in 2o11. They have their Alliance with a Board of Directors, a Scientific Advisory Board and even a  Tweet-Chat. Now they’ve produced this fun video that educates people about the symptoms of SCAD. The reality is that the symptoms are overlooked and SCAD patients are often misdiagnosed. I invited you to watch the video and share the SCAD story with friends!

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Screen Shot 2013-08-22 at 9.58.39 AMOne of the amazing developments in healthcare over the last few years has been the rise of the connected patient or ePatient. At the end of 2011 I was interviewed by a reporter who was writing an article predicting the leading healthcare marketing trends of the upcoming year. My rather optimistic prediction was that 2012 would be the year of the ePatient. In the end, 2012 was probably not the year of the ePatient (nor was 2013), but there was progress. The voice of the patient was more prevalent than it had been in the past, and the participatory medicine movement was gaining momentum. The Society for Participatory Medicine (e-patients.net) has been a significant force in this movement. For those not familiar with the term, the Society defines participatory medicine as a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care. Although there are well know advocates and activists working for patient engagement (ePatient Dave, Alicia Staley, Kelly Young, Regina Holliday, to name a few), much of the work has been done by thousands of patients who have blogged, Tweeted and engaged in community building activities in an effort to tell their stories and change the prevailing relationship between patients and providers. (explore: We are all patients!)

I’m certainly not the first person to say it, but patients are the most under utilized resource in healthcare. It’s not just the clinical setting where the patient’s voice has been missing; it is also the case within hospital marketing departments. The field of healthcare marketing in general has failed to recognize the value and importance of the patient’s perspective. Think about healthcare marketing conferences. It is the rare exception when a healthcare marketing conference has a patient panel on its agenda or has a patient as a featured speaker. At our professional development events, the patient has been conspicuously absent. That’s odd given all that we can learn from patients and family members. I would argue that any marketing strategy that we develop should be informed by the perspective of the patient. How are we to understand how our hospital brands are perceived without LISTENING to those constituents we serve? The need to hear and learn goes far beyond patient satisfaction surveys. I’m talking about creating a culture and an understanding within our organizations that recognizes the value of the patient’s voice. We need to hear their stories and not be dismissive. (Listen to be better clinicians and provide better care)

That’s why I advocated for and am leading an ePatient Panel today at the the Spring Conference of the New England Society for Healthcare Communications. It will be a keynote session over lunch, and I have gathered an amazing group of panelists:

Alicia Staley and I have known each other through social media for at least 7 years. We first met when I was on a tear trying support Tufts Medical Center in a managed care battle with BCBSMA. At that time when I met Alicia, she had about 10 times more Twitter followers than I – and was more than willing to jump in and help me out by advocating for Tufts MC online. She shares my affinity for the organization! I have considered her a friend ever since. Alicia is a 3 time cancer survivor committed to making a difference in the health care community. She started the Staley Foundation in October 2007 as a way to work toward education, advocacy, and assistance for those affected by cancer as patients, caregivers, family, or friends. She shares her passion and enthusiasm for helping the cancer community by contributing to http://www.awesomecancersurivor.com and www.thehitcommunity.org. And she is one of the moderators of the weekly Breast Cancer Social Media chat on Twitter.

Catherine Rose, PhD, is an ePatient and an eParent. Alicia Staley originally connected me with Catherine (thanks Alicia!), although Catherine and I are both members of the Healthcare Leadership Twitter Community. Today, Catherine is Product Manager for Healthcare Lighting applications at Philips. She completed three degrees in 4 years at NC State University. Then she went to Stanford for a PhD in Mechanical Engineering, rounding that out with an MBA in Finance from University of Massachusetts. But with all that, Catherine says her real education started when she became a Mom. She is mom to Alexis (8) and Jessica (6), both of whom have various medical issues. Inspired by the experience with Alexis’ combined hearing and vision impairments, Catherine developed a product called LightAide. Catherine works to support other families in their challenging medical journeys.

On her blog, Catherine states that no parent should feel:

  • inferior to a health professional because of educational status
  • isolated because of a rare disease diagnosis
  • alarmed because of the complications of their child’s medical issues
  • helpless because the complexities and healthcare system bureaucracy
  • hopeless because of future path outlined by clinicians

Laurie Edwards is a patient advocate and health/science writer whose work has appeared in the New York Times, Boston Globe magazine, Psychology Today, and WBUR, among many others. She has had several chronic illnesses since childhood. Laurie is the author of Life Disrupted: Getting Real About Chronic Illness in your Twenties and Thirties, named a 2008 Best Consumer Health Book by Library Journal, and In The Kingdom of the Sick: A Social History of Chronic Illness in America, which was voted Editor’s Choice for Adult Books, 2013 by Booklist. She teaches writing for the health sciences at Northeastern University in Boston, MA. I’ve written about Laurie’s books in this blog. They are extraordinary and recommended reading for any healthcare professional.

Amir Lewkowicz is is co-founder and Vice President for Partnerships at Inspire. Inspire is an online platform that connects patients, families, friends, caregivers and health professionals for health and wellness support. Amir is leading Inspire’s efforts in partnering with patient advocacy groups as well as with pharmaceutical, biotechnology and medical device companies.Amir Lewkowicz and his partners created Inspire as a way to help accelerate clinical trial recruitment through online social networks. They believed then, and still do now, that if you could organize communities of patients by therapeutic area and give them opportunities to participate in medical research, you would have patients who are highly engaged and open to research opportunities. Amir received his BA from The George Washington University and his MBA from Babson College. It was at Babson where he became fascinated with social media and decided to make social media his career.

Understanding and Appreciating Patient Feedback

Too often I hear healthcare professionals talking about that one, loud, dissatisfied patient that is creating a stir, and is wholly unrepresentative of others who visit the practice. More likely, this individual is the one patient who actually decided to speak up and express their dismay over the manner in which they were treated. We need to be open to hearing that, and be welcoming of their perspectives. After all, our organization’s brands don’t live in our brochures or websites; they live in the experiences of patients, family members and our employees. These are the people who go out and share their experiences with friends, neighbors and colleagues. These are the storytellers who shape brand perceptions and public opinion. Going back to the analogy of hive marketing, after their encounter with your organization, they return to their community and recount their experience. Those who hear the story, leave the hive, and pass the story along, or, at a minimum, carry it with them and store it in the back of their mind.

When I encounter patient complaints on Facebook, they are often angry and frustrated. I believe that some of that comes from a feeling of not having a voice and not being heard. When patients engage with clinicians, the encounter is usually way too brief, and there is little opportunity for meaningful exchanges to take place. The patient is out the door, head spinning, wondering what just happened. The question I would ask is: Do we invite meaningful patient feedback? Do we strive to create environments where patients feel that their input is welcome? Both marketers and clinicians need to work to create environments, online and real world, where patients feel comfortable offering feedback and know it is valued. How do we show that we value feedback? Go back to one of the principles of community: Reciprocity. At some point in an encounter with a patient, we need to stop talking and ask fro their feedback. That changes the interaction from an “encounter” to a “conversation.” It may seem simple, but when you’re moving fast, it is easy to forget to slow down long enough to ask the all important question.

Marketers can help their organizations gather valuable input from patients through the management of the hospital’s online  communities (Facebook, Twitter, YouTube, etc). There is an art to creating online environments where the free sharing of opinions and experiences takes place. As most of us have experienced, you can’t simply create a Facebook page and expect random conversations to spring to life. As the community manager or moderator of the group, you have to invite conversation and let people know (by example) that it is okay to share within the platform. If all they see is post after post by the hospital, they are likely to feel they are witnessing a monologue rather than taking part in a conversation. The first key to creating a safe environment that welcomes patient input is to ask questions. This is no different than the patient’s experience with the clinician. By asking the individual how they feel and how we can help them, we are signalling that we value their input. So ask. However, in the beginning, simply posting a relevant question on your Facebook wall may not stimulate engagement. Sometimes conversation needs a little encouragement. The people visiting your Facebook page will look to see if others have comments, before they comment. That’s why you may need to seed the conversation. Have a couple of friends or colleagues leave responses. This is all part of the process of creating an environment that invites conversation. You’re not trying to invite negative comments; you are trying to create community and sharing. The potential benefit to the organization is the learning that takes place when brand constituents start to share their experiences and perspectives. It will be up to you to pass those along to the appropriate individuals who can benefit from the information.

It is important to note that having a platform for expressing yourself is not the same as being heard. When you invite members of your online communities to share their stories, you are opening a door to conversation. That means that you need to be prepared to respond. Some comments only require a quick “thank you,” while others will require you to serve as a mediator or facilitator. If you don’t know the answer to a question posed by a visitor to your site, it is best to admit that you don’t know and offer to connect them with the appropriate individual within your organization. But don’t lose track of the individual and their need for an answer. Make sure that they know you are working to get them an answer. In the end they may not like the answer, but at the very least, they will know that they have been heard and you treated them in a manner that clearly demonstrates that you value their input. By responding to them initially within the forum (for example, on your Facebook wall), you are showing the entire community that you care. In that way, you are opening the community to more conversation and eliminating any taboos that may exist. When the nature of a community member’s feedback is harsh, after your initial response, I recommend taking the conversation offline. At my firm, we will typically respond by acknowledging their comment while providing an email address where they can contact us for a more detailed conversation. We make it clear that we value their input and see this as an opportunity to improve the patient experience. That’s what I mean when I suggest that hospitals should welcome negative feedback. Through feedback from patients and family members we will become better care providers and better marketers/community builders.


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Stanford University School of Medicine and online patient support community developer, Inspire.com, have produced a special report that is a powerful compilation of patient stories. I have long followed the patient stories that Inspire and Stanford have shared on Stanford Medicine’s SCOPE Blog. So I was excited to see that they have published this compilation titled “Experts by Experience.” As I’ve stated many times in the past, healthcare professionals, whether they are administrators, clinicians or marketers, will be better at what they do if they spend a little bit of time listening to patients. This report gives us that opportunity. I’m grateful to Stanford, Inspire.com and all of the patients included in this report, for sharing this content.

The report is embedded below. Here is a link to visit the report on SlideShare.

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