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.)

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?

No doubt about it, I am an e-patient. There are no handy-dandy pamphlets lying about a doctor’s office about my condition, Common Variable Immunodeficiency (CVID); it’s not well-known or fully understood. I rely on the internet to help me stay informed about my care. Not all physicians are receptive to patients doing their own research. One explained to me that he had spent years developing his skills as a diagnostician, only to have patients come in and tell him what they had before he even had a chance to examine them. So there’s a fine line between being an educated self-advocate and being the person who shuts down a relationship with another human who just may know what you need.

I depend on research and information gleaned through the internet: through NIH, through the US’s Immune Deficiency Foundation and the UK’s Primary Immunodeficiency Foundation; through pharmaceutical company sites; and even through individual blogs. I have learned the pros and cons of delivery methods for my gammaglobulin therapy; I have learned more about related autoimmune concerns. In return, I share a bit about my experience with CVID on my blog, as it may one day help someone out there who is struggling to come to grips with the diagnosis.

Additionally, when you receive a whopper of a diagnosis, you have to contemplate your existence within the world of health insurance. You now have a pre-existing condition, and if you lose your health insurance and don’t get picked up somewhere else after a certain period of time, you probably won’t get insured again, a devastating blow to anyone who relies on therapies which are otherwise unaffordable. Thanks to the internet, I was able to speedily discover the laws in my state about health coverage.

2) Were you always this engaged in your health care, or did your CVID diagnosis trigger it?

I have always been a researcher. As a mom, I have used those skills to investigate my children’s health issues online. But what kicked my internet health research efforts into high gear for me was an autoimmune condition, Idiopathic thrombocytopenic purpura (ITP), which landed me in the hospital for two weeks and which, I have since learned, is a common predecessor for CVID. One day I had platelets; the next day, I didn’t. And no one knew why. But I helped to put all the pieces together: family history (a member of my family has CVID), my own health history, and internet research. Although one doctor told me that he believed it highly unlikely for two family members to both have CVID, my internet research, coupled with my personal data, proved otherwise. Two immunologists later, I have been diagnosed, am in treatment, and am feeling better than I have in awhile!

3) In a previous stage of life you managed a prominent think tank’s website – how have you applied those skills and experiences to your current work? Was there anything else in your background that may have prepared you for what you are dealing with now?

I received a masters in Public Policy/Political Science from a program that emphasized operationalizing your strong quantitative and research abilities in real world situations. You were not going to spend your days locked up in the ivory tower of a higher education institution; you were going to go out into the world and make it work. My work experiences in education policy research gave me a solid foundation in analysis and advocacy, which are highly valuable skills when applied to health issues. For one thing, you have to be a very discerning consumer of the research on the web. You’ve got to know which sources are reliable and which are not, as erroneous information can sometimes be life-threatening. Some sites can tout data, saying something absurd like: “100% of the people surveyed said aloe juice is a wonder elixir.” When you find out 100% means one person interviewed out of a total pool of one person, well, that 100% doesn’t mean much, does it.

And once you know what you’ve got, you have to be your best advocate. For the past two years, I feel like I have become a professional patient. Because people with CVID are at higher risk for lymphoma, stomach cancer, lung and other issues, I must visit several different doctors each year and get scanned frequently. (I probably glow in the dark.) There was a time when I was a much more trusting patient. After being patronized and marginalized one too many times, I don’t accept that anymore: not for myself, and certainly not for my family. I am grateful for the doctors I have found who I feel are true partners in my continued health. And I will remain an advocate for my family’s health.

About 14 years ago, I moved away from policy work and started out life doing technical and content work on the internet. I still remember when my then-company was developing a site for health information, a place for people to meet others like themselves. I don’t think that site still exists, but I’ve never forgotten a lesson I learned from that and other sites I helped to develop and manage: community is powerful. You may not know people in your town or city who have your condition. And maybe you prefer a level of anonymity because of your condition. On the internet, you can find people who struggle as you do, and you don’t even have to tell them your real name. And the support is strong. I have seen people develop very real, long-term relationships with others, whether they are pregnant women who are all due to give birth during the same month or people battling cancer.

And reaching out via the internet is now an ingrained habit in our world. Even while managing a think-tank website, I had a lot of emails from strangers, strangers reaching out. They had read our research on health issues, or justice issues, or something else, and could I direct them to a place where they could find people who could help them? Like I said before, community is powerful, and there are a lot of people who are looking for their place to fit in and heal whatever ails them.

4) Was there a lightbulb 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 your family?

As I mentioned before, my lightbulb moment came while I was healing from the ITP hospitalization. The medical people I knew were mystified as to why this would happen (hence why it is called an idiopathic condition.) Something in me just knew that it had to do with CVID: it just seemed like this was how it played out with my other family member; and my ITP didn’t respond much to steroids, but it did respond to IVIg, also known as gammaglobulin, the blood product used to treat CVID. So I began to research ITP and CVID, and I came to find out that people with CVID often *do* end up with related autoimmune issues, particularly ITP. Suddenly, it all made sense to me. After blood tests and scans were completed with two immunologists, voila! I had a diagnosis.

While there’s nothing happy about being diagnosed with something like CVID, there is a certain sense of relief you feel when you know what is happening to your body. Would I have figured this out without the internet? Certainly not as speedily as I did.

(If you liked this interview, check out the interviews of the Stirrup Queen and Amy Tenderich.)

Hearing her speak at Health 2.0 was a highlight of the conference for me and she just co-authored a book, so I wanted to bring her over to our page and ask a few questions about how she came to be such a kick-ass e-patient.

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 prefer?

I like all the e’s you mention – although “equipped” really depends on how good our health insurance is. Many PWDs (politically correct term for people with diabetes) have a real struggle to get coverage for insulin pumps, supplies, and testing devices – in particular new continuous glucose monitors, which can be a godsend to patients with volatile blood sugars.

Meanwhile, the Internet has given us patients a chance to come together to share experiences, practical tips, and our feelings. And it’s also given us a collective voice we never had before. With free access to all sorts of medical information, patients like me can drive our own care for the first time in history, by asking the right questions and demanding the latest and greatest treatments.

2) Were you always this engaged in your health care, or did your diabetes diagnosis trigger it?

Nope, I was never very engaged at all – except when I had that fight with my health insurance over paying the bills for my second C-section (I’ve had three). But my diagnosis with Type 1 diabetes changed everything. It came as quite a shock, and I realized that it was up to me to be my own best advocate and learn how to navigate the American healthcare system. I’m still learning every day, because it’s incredibly complicated.

3) You have a background in journalism and communications – how have you applied those skills & experiences to your current work? Was there anything else in your background that may have prepared you for your new role?

My husband says being a blogger is simply “my calling.” I’m a trained journalist with a master’s degree in communication studies, so that helps. But the beauty of the blog is that it’s so personal and free-wheeling. If I feel like posting a joke or a poem, I can do that anytime. Meanwhile I take my reporting role quite seriously, investigating new products and advancements in diabetes care, and interviewing all sorts of celebrities and luminaries in the field.

What else helps?

Type A personality.
Slightly neurotic.
Quirky sense of humor.
Classic over-achiever.

All of these traits are quite conducive to dealing with Type 1 diabetes, which is a very high-self-maintenance disease.

One of my favorite parts of the article was an explanation of this alphabet soup:

I am Tertia, I am 35 yrs old, dh is 30, TTC 4 yrs, dx = PCOS, stage II endo, irregular AF and I don’t O on my own. 3 x injectible IUI’s, all BFN. IVF #1 = cancelled due to falling E2’s. IVF #2, zero fert, rescue ICSI, BFN. IVF#3 = BFP, but ectopic, 3 x FET’s = BFN, IVF #4 = BFP, but MC 8w3d due to T21, IVF #5 = BFP, twins, loss of one at 21w, the other born 25w6d, died after 10 days in NICU.

If you squint this could be the sig line for an ACOR subscriber or other e-patient community member.

Another favorite outcome of reading the article was my reconnection with Melissa, creator of the blog Stirrup Queens and Sperm Palace Jesters, whom I met standing in the check-out line at Peggy Orenstein‘s reading of Waiting for Daisy last year in DC. Melissa was kind enough to answer a few questions about being an e-patient, evaluating treatment choices, and combating stereotypes.

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?

Absolutely. I think the Internet has made it easier to be a strong self-advocate. All the talking that is not taking place in the waiting rooms is taking place on blogs and bulletin boards and people are able to look at another person’s experience, search for similarities with their own, and bring questions back to their doctor to help move along their treatments or get a diagnosis.

2) Were you always this engaged in your health care, or did infertility trigger it?

I’ve always been the person who has waited and waited to make an appointment so infertility definitely was the first time I took an active role in working towards a solution to a medical problem. I think I also just went along with what doctors told me prior to infertility. But the emotions that emerged from not being able to conceive drove me to become more of an active participant. I couldn’t stand waiting anymore and there is so much waiting inherent in a cycle.

3) In your manifesto, you write about how previous generations didn’t have many choices and our generation may have too many. Can you talk a bit about the internet’s impact on that situation?

I think you read so many stories that it brings out the what ifs and makes it difficult to stop–to stop treatments, to stop trying one solution or another. The drive to stop (and I think it can be healthier sometimes to stop than to continue) has to come internally because you can always find the next thing to try or the person who went through 14 IVF cycles and the 15th worked.

Having choices is definitely a good thing and I’m glad the technology exists. But it’s hard to walk away or to know which path to choose. Some of it is chosen by the doctor, but sometimes, the decision is left in the hands of the patient.

4) In Miller’s article, she writes about how infertility was a “silent disorder” and went on to talk about how this generation is no longer silent – do you agree? Has the internet had an impact on this “coming out” process? Related to that, have you taken inspiration or learned techniques from other formerly “silent” communities?

If you had asked me this question 2 years ago, I would have said that our generation is far from silent. But now, 2 years down the road, I can see the huge difference between speaking about it online and speaking about it face-to-face. The Internet makes discussion easy and it can be a misleading barometer of how open people are in the face-to-face world.

I think my generation is more “out”–that there are simply more of us that are willing to speak about it frankly and openly vs. my parent’s generation. Which is not to say that everyone is open or that it is no longer a silent community. I think we’re doing a good job connecting within the community and talking within the community and building in-roads within the community. And that is the first step. The next step is taking it outside the community, tearing down the stereotypes that are often presented in the media, having frank discussions in the same way we now do about other diseases that were whispered about years ago.