When Keith Schorsch began suffering from facial paralysis, fatigue, and severe muscular and skeletal pain, eleven doctors failed to identify the cause. Luckily, a friend recognized the symptoms as similar to what she had suffered when she had Lyme disease – and that’s the clue that saved Keith.
Keith turned his experience into a consumer call to action (and a business plan) by founding Trusera.com. Here is his e-patient story…
1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the “e” also stands for electronic. Would you identify as an e-patient? Is there another term you’d use?
By this definition I would definitely identify as an e-patient. I consider myself as part of a broad, accelerating movement to put more control of the consumer’s health experience in their hands using the power of technology.
The term I prefer, however, is “engaged health consumer.” Increasingly, consumers are taking charge of their health by finding health information that relates to their personal context in order to make personal health decisions. Today’s consumer has clear unmet health needs and wants to do something about them.
This is evidenced by your work Susannah at Pew Internet and studies such as Deloitte’s 2008 health consumer survey that showed that 41% of health consumers have medium to high engagement with the health system and another 28% rely more upon themselves than their doctors.
I believe we are at the beginning of a huge wave of this self-interested, highly involved consumer behavior, especially as baby boomers age. They have experienced huge, positive changes in their consumer lives that have given them more control of their life experience and expect the same when they face health and wellness issues.
For me, the term “patient” implies a more passive role for the consumer in their health journey. Webster’s defines a patient as: 1a) an individual waiting or under medical care and treatment; b) the recipient of any of various personal services; 2) one that is acted upon. I believe the ethos of the online health consumer today is quite different. He or she is actively seeking and stitching together fragmented pieces of data from their doctor, the Internet, and people who’ve been through it and trying to assemble them into a framework that relates to their personal context and preferences. Why should a consumer have more information about their next automobile purchase than they would about a health or wellness issue they are facing that requires action on their part?
Viewing the engaged health consumer as at the center of their customer experience, rather than a passive participant in the health value chain is a sea change in how the current US health system operates today. As I very much like your concept of equipped, enabled, empowered and engaged, perhaps we can split the difference and call them “e-health consumers”!
2) Were you always this engaged in your health care, or did your experience with Lyme disease trigger it?
Like many people, I was not highly engaged in my health care through my 20s. I became interested and engaged in prevention and wellness in my 30s when I became a parent of two young boys, and my experience with Lyme disease triggered my deeper involvement and taught me a valuable lesson: You must be the number one advocate for your own health and for others’ health if you are in a caregiver role.
No one else will play this role for you – not your primary physician or any other health professional. In my experience, I lacked access to the people, tools, and information that could have helped me get treatment sooner and that would have been more personalized to my health situation. As the director of quality at a leading Seattle-based hospital system said to me personally, the specialized U.S. medical system failed me. Each of the 11 doctors who failed to diagnose me played the role of a highly specific hammer, and I was a very targeted nail in their caseload. Being wrongly pressured to submit to brain surgery to address a mere symptom of my still-undiagnosed Lyme is one great example of this.
After I was diagnosed, I turned to the Internet and other people who had been through the experience. But I found information on the Internet to be either broad and generic expert information that I couldn’t apply to my personal situation or consumer-generated content whose relevance, credibility, and usefulness was hard to assess. I love scaling great consumer ideas and technologies, so I started to wonder whether my situation was unique.
3) Was there a light bulb moment for you when it comes to online engagement and health care? If there wasn’t just one moment, can you cite an example of how the internet played a crucial role in your care or the way you take care of someone else?
I had two light bulb moments. My first one was when I received a call from the wife of a friend while I was in the midst of debilitating physical pain and exhaustion after almost three months of suffering the symptoms of Lyme. This friend had heard through the grapevine that I was suffering facial paralysis, fatigue, and severe muscular and skeletal pain, and said she had had similar symptoms when she contracted Lyme in Connecticut in the 1980s. “Go to your doctor and get checked out for Lyme,” she said. The next week she was proved right by a wonderful rheumatologist. Her call changed my outcome and my life – just a week or two more and I would have been firmly ensconced in late-stage Lyme disease, a prospect that can have lifelong implications as a serious chronic illness.
I thought to myself: How could I have better accessed my personal network and the network of others whom I trusted over the past three months to leverage that collective experience? Also, how could crowd sourcing with even more people have helped accelerate my path to a proper diagnosis and help me make a decision about the proper treatment for me? Throughout the process, I kept wishing I knew five people in the Pacific Northwest who’d been through this and many more who’d tried different approaches to treatment.
My second light bulb moment came a few months later as I was getting back to health from the Lyme. While playing tennis, I tore two discs in my neck that were pressing against my spinal cord. I was told I was at risk of being paralyzed from the neck down if I stepped off a curb wrong, tripped on the stairs, or lifted my 3-year-old. An orthopedic surgeon scheduled emergency spine fusion surgery and gave me two hours to make a decision to proceed. Although the injury was real and I was in tremendous pain, this sounded a little too familiar to the craniotomy I was offered six months prior when I had Lyme. I decided to defer spine fusion surgery until I had more information and more control of my process.
I made it my full-time job to find the right treatment. I started to work my personal network and got connected to a friend of a friend who had flown to Germany and received an artificial disc replacement (ADR) that preserved his spine’s function. I researched this option through PubMed and connected online to others who’d been through the surgery, which was in FDA trials in the United States. I connected to doctors all over the world in considering this and other possible avenues. My motto was, “no stone left unturned.” Three months later I had successful ADR surgery in Germany with the leading spine surgeon in the world.
All the while I was thinking: Why is this so hard? And if it’s this hard for me, what’s it like for a single mother who’s supporting two kids by herself without the time and the resources to do the extensive research that I did?
4) You have an MBA and an impressive background as an executive at both Amazon.com and McCaw Cellular. But a quick search on your name turned up another past role, as a member of a Gilbert & Sullivan troupe (unless there is another Harvard-educated Keith Schorsch out there). First, did your business acumen help or hinder the way you dealt with your diagnosis and treatment? Second, did your theater experience (or any other personal talents or skills) come into play?
Thank you for your kind words. I do admire your research skills, Susannah! My business experience helped me a great deal. Visioning success is a big part of doing well in business and served me well at Amazon, McCaw/AT&T Wireless, and now, Trusera. To execute on my vision of getting back to health, I approached my health situation as a problem to solve and assumed that the right answer for me was out there. I just had to be willing to work hard and creatively to find the right path for me.
You put a smile on my face when you mentioned Gilbert & Sullivan. In college I evolved from a some-time journalist to a full-fledged theater producer, producing Shakespeare, G&S, and other productions. For me being a producer was about assembling the cast, crew, and resources to create something of value for the community.
I think my theater experience came into play with my diagnosis and treatment in that I employed a lot of creative and out-of-the-box thinking to solve my problem. I approached resources and assembled information with an open mind, and in doing so, discovered the benefits of integrating European, Eastern, and naturopathic medical treatments along with evidence-based Western medicine. This helped a great deal in getting back to health faster than I normally would have had I chosen to follow only Western medical protocols.
In the end, persistence, an inquiring mind, management skills, and a willingness to challenge conventional wisdom gave me the answers that were right for me and allowed me to be equipped, engaged, empowered, and engaged – in short, at the center of my health experience and not a mere participant or actor in a drama played on the “stage” of our health system.
My message is this: Don’t let health happen to you; take charge of your health and find the answers you need that fit your personal context, preferences, and needs.
(Read more e-patient stories.)
e-Patient Dave says
Keith, I’m overwhelmed by your story. Holy cow.
I know the feelings you faced, but for me the answer was a few days away – I lurked on an ACOR listserv then asked a simple question and got the right answer (from peers). I applaud your determination and your willingness to share your story.
Very glad to learn of Trusera. How long have your doors been open, and what are you doing to expand membership?
Susannah Fox says
Keith (or anyone who wants to respond),
“No stone unturned” is probably a good motto for anyone facing a health challenge, esp. one that your doctors can’t identify. Did you stick to the internet or did you go to any offline resources, like a library, community group, or bookstore? Did you do most of the research yourself, or did you ask for help?
Also, I take your point about the “engaged health consumer.” When I started researching the internet’s impact on health & health care, I came up with the term “health seeker” to describe internet users who gathered health info online. It seemed to fit the moment (2000-4) b/c so much of the action was in search.
Search still dominates (and has inspired the derisive “googler” term that we’ve written about here and here ) but people are moving past search, esp. people who are deeply engaged in their health. They want to participate, not just search. I think Tom Ferguson coined “e-patient” because it placed the movement in a medical context, not a business context. But then again, not everyone is a patient — there are caregivers, loved ones, and co-workers hoping to contribute to someone else’s health. I think as long as the language is respectful, we can use whatever label works!
Keith Schorsch says
Health seeker is a great term to describe internet users who gather health information online, and I use it often. I agree that people are moving past search and founded Trusera as an online health network dedicated to providing engaged health consumers great engagement in and control of their health experience.
For my own health journey, I did much of the research myself. My wife, Jennifer, also played a large role in researching and advocating for my health. Husband-wife tag-teaming is a trend I see often, especially with child health issues.
I did contact offline resources, such as Lyme researchers on the East Coast, and purchased several books on Lyme, its history, and treatment in order to collect the multiple points of view I needed to relate to my health situation. Because I was on the West Coast with a disease that was more prominent in the East, I did not utilize offline resources such as a library or community group, although I did subscribe to several newsletters and periodicals from established Lyme communities on the East Coast.
Susannah Fox says
You may want to check out David Bradley’s story (which I pieced together here). He was in your same boat – a mysterious illness, discovered in partnership with his wife thanks to a group of strangers.
Maureen Schorsch says
Upon reading your heart wrenching story of agonizing pain, I sympathize with you.
I am the daughter of the late Bruce Martin Schorsch of Schorsch Brothers Home Builders.
My dad died in 2001 and I’m just wondering if you are related to him. I am searching for Schorsch family members to get as much history about our family as possible.
Thanks. I await your letter!
Seattle Wa Chronic Fatigue Syndrome says
Seattle Wa Chronic Fatigue Syndrome
To reprint, publish or integrate this article in any
Tom Erhardt says
I talked to you several years ago about our family tree and our connection through Albert Schorsch, Sr. and Elizabeth Atzhorn. I would like to share my work with you and ask for comments and corrections. Could I get your snail-mail address so that I can send a copy of what Schorsch information I have to you?