In our last post from our interview with Jennifer McCabe Gorman of the Health 2.0 movement and Health2con.com we hear about her own incredible journey of recovery from physical trauma and pain and how she utilized the internet to help navigate and motivate her through it all.

You can find Part 1 here:

http://www.sugarstats.com/2008/10/11/interview-with-jennifer-mccabe-gorman-pt-1-of-3-background-on-health-20/

and Part 2 here:

http://www.sugarstats.com/2008/10/17/interview-with-jennifer-mccabe-gorman-pt-2-improving-patient-care-through-health-information-technology-hit/

Nedrra Lanakila (N): So MUCH to explore with you. You are to be commended on your earnest efforts! I’ve got to hear the upshot to your personal story: how long, and what happened to you?

Jennifer McCabe Gorman (JMG): I had to. I was 20 years old and my leg was at stake. I didn’t feel like I had any choice at the time. What was I going to do, give up? No way!

Well, the upshot is an amazing, miraculous recovery. When I’m home in the states I will send you a photo of me after the first few surgeries, with a 15 pound external fixator on my right lower leg (like the halo you see on people with broken necks).

N: Okay. Wait. Stop. Backup.

NOW you’ve got to share just a bit about the actual accident please? If you are too sensitive about it I totally understand and support that.

JMG: No, it’s totally cool. Sharing our testimonials, our personal histories of diagnosis, crisis, recovery – all these enable our individual and collective healing. It’s cathartic.

The short version: I was 20 years old. I’d just gotten a scholarship to study for my junior year abroad at St. Andrews University in Scotland, a big deal for a kid from Southern Maryland!

I was working 2 jobs to save up, training hard at the gym. I went to a friend’s party on Memorial Day weekend, his house was about 40 minutes from my parents.

When I drove home, I remember being so tired that the lights by the road were fuzzy.

About 1/4 mile from my mom’s house, I fell asleep behind the wheel of my red Saturn.

I drifted across 2 lanes of traffic and hit an 8 foot iron ship’s anchor dead on.. lol – when I do something I do it big!

It’s a very rural area, and this farm had a ship’s anchor at the edge of a field and a long dirt driveway.
I picked a good place though, because on one side was an oak tree, and the other was a telephone pole.

JMG: Miraculously, the car didn’t speed up, and I didn’t hit anyone else. The impact was about 50 mph. I drove the anchor on it’s side a bit, and the engine block in the car crushed up around me.

Apparently, I woke up when I hit the anchor (I don’t really remember), but couldn’t get out of the car. The block crushed my right leg only, because I had a standard (stick) transmission, and had tried, instinctively, to stop the car.

I only remember bits and pieces. I woke up, looked down and saw my right knree like a blooming onion with bits of bone and seatbelt and all kinds of stuff. Well, bleck. I couldn’t see my right foot because it was twisted completely around.

I was bleeding quite a bit and remember trying to get out of the car since I knew that was a bad thing. But I kept passing back out.

Unbelievably someone was watching out for me. An 18 year old kid named Denny Gibson (I don’t know him: I heard this way after the accident) was walking home from a party.

He heard me screaming and ran up. Then he followed the driveway close to where I crashed, to a house where the owners didn’t believe him. They thought he was some robber punk kid and called the cops.

The MD State Police arrived first, called ambulance immediately. They cut me out of the car and rushed me to our local ER.

Thank god we had good orthopedic docs in our local hospital, who just kind of flushed out the wounds, ‘fixated’ the ankle (turned the foot back around), wrapped me up, and sent me up to Shock Trauma at UMMC in Baltimore.

I was there for 5 days. I kept waking up and asking everyone in sight if I still had my right leg.

Needless to say, everything after that was a moment of celebration followed by concern. Yes, my leg is still here. What happens next? No one really knows. We’ll have to just see.

I ran a 5k 2 years after my accident. Two summers ago, I finished a sprint triathalon at Lums Pond in Delaware. I swam 1/2 mile, bike 12 miles, and ran 3.2 miles ( a5k). This is after 16 surgical procedures.

I work out at the gym regularly, and have a neat, characteristic limp (only after a really long, intense day) and some sweet scars. Unless I tell the story of my injury, most people never know.

N: Oh. My. God.

JMG: It’s not as bad as it sounds. Faith, and family, and the WEB helped me get through. I have been so blessed, I can’t even say.

N: Give me a moment to recover. I was breathing through a clenched fist over my mouth and nose.

So after the doc told you to ‘pray’, you discovered online supportive communities and online medical info.

JMG: Exactly. I learned from someone on mybrokenleg.com that infection was a primary concern after an injury of this type.

Then I went back to the hospital and requested my operative notes (the dictation doc does after surgery).

Sure enough “exquisite risk of infection.” So we were extra vigilant about that. It’s like Amy Tenderich’s blog post a while back at Diabetes Mine about being at a party where she’s touching sugary stuff, then takes her glucose, but forgot to wash her hands.

This is stuff most docs will forget to tell you, because they aren’t LIVING with this thing.

Also, it can be the tiniest, seemingly insignificant portion of advice or information a community member gives you that can be the most valuable.

When I had an ex-fixator, someone at the hospital (Kernan, in Baltimore, specializes in ortho rehab), told me that Adidas made track pants with snaps all the way up the sides (easy to put on and take off over the contraption on my right leg stabilizing the fractures).

Just being able to dress MYSELF made a huge difference in how I felt about recovery. Seems dumb when you try to convey the value that has, but someone who has been there ‘gets it’.

N: Yeah. I get it. But that’s another story!

That’s truly incredible and inspiring. Thank you for stepping forward to share it with the SugarStats Community. I know that our community will ‘get’ the resolve you had within yourself not to get beaten by what the doctors initially said to you, or the condition you were in.

You tapped into self-determinism and found ways for life to be sweet again and full again and vibrant.

N: So never take never as the prognosis.

JMG: Indeed. That’s an intensely personal approach to ‘medicine’ in which we try to ‘beat’ disease and ignore the severity. You can’t run from that. You have to choose to face it head on.

Or avoid it. But what makes you safer? Definitely facing it to whatever degree you personally can handle.

N: Congratulations! What a fantastic story and an ‘ending’. Definitely leaves us wanting to know more about you and Health 2.0.

JMG: Thanks Nedrra, it’s funny – I feel like I’m just beginning. Health 2.0 is what’s enabling me to meet amazing people like Marston (Marston Alfred, Chief Architect and Originator of SugarStats).

N: Are you doing other things aside from this work in the HIT arena?

JMG: Wow. That’s a long list! Lol

1. Writing for HealthCentral.com on healthcare policy, especially as tech and web-based stuff relates to the millennial healthcare generation.


2. I’ve started up NextHealth.nl with a bunch of amazing folks here in Holland: Maarten den Braber, Martijn Hulst, Niels Schuddeboom, Jacqueline Fackeldey, and Jeroen Kuipers.


3. Writing business ideas left and right, manifestos and blog posts on how to improve healthcare NOW at Health Management Rx.


4. Traveling around to different healthcare events, meeting inspiring people and trying to bring empathy back into our global healthcare conversations.


5. And somewhere in there I’ll get a degree so I can teach perhaps, med students how to incorporate patients into the care spectrum as partners, but that’s farther off!

N: Thank you! I’m looking forward to continuing conversations together.

I know our community will want to know more about what’s happening with Health 2.0, your insights on it and about you. I know I do.

JMG: Nedrra, thank you so much. It is so cathartic to tell and difficult. I just hope more people who have been through the proverbial wringer come back and decide to change the system. Awesome!

To find out more about the Heatlh 2.0 conference being held at the San Francisco Marriot on October 22nd and 23rd, go to http://www.health2con.com/

For more of Jen McCabe Gorman’s views go to her blog at http://healthmgmtrx.blogspot.com, and http://www.health20.nl/ is a website related to Health 2.0 based in Europe and The Netherlands.

We continue with Part 2 of our interview with Jennifer McCabe Gorman. You can find Part 1 here:

http://www.sugarstats.com/2008/10/11/interview-with-jennifer-mccabe-gorman-pt-1-of-3-background-on-health-20/

Nedrra Lanakila (N): So how does HIT (Health Information Technology) help improve patient care and reduce costs, from what you’ve seen over the last 18 months?

Jennifer McCabe Gorman (JMG): Aha – truly excellent question re: HIT and improving care/reducing costs. That has a long and complicated answer, and it will be largely opinion based – as quantitative data on savings is just starting to trickle in from Europe and has yet to be released really in the US.

I think the creation of online communities that allow us to connect to other e-patients creates a psychic methodology for dealing with illness in our daily lives that is not encouraged in the current medical delivery structure, which can be dehumanizing to say the least.

To read more about Jennifer’s viewpoint of online communities, visit her blog at: http://healthmgmtrx.blogspot.com/2008/06/importance-of-communities-in-healthcare.html

JMG: What I’m hearing and seeing, largely here in The Netherlands and in the USA, is that Google Health and Microsoft HealthVault, among other PHR (personal health record) providers such as Dossia, are a good start, but they’re not enough.

N: Tell me a bit more about the psychic methodology. Is that what you see to be the greatest difference that it’s serving?

JMG: The psychic benefits…as a person who is also a repeat orthopedic surgery patient, who had a very unique trauma injury, I had to go online to learn about my condition.

My doctor is one of the best ankle surgeons in the world, but at one point, I asked him what else I could do to get through this, and his response was “pray.”

When I went online, I discovered two completely divorced kinds of knowledge communities (this was back in 2000).

[I found] medical journals for docs, by docs such as Medscape, NEJM, etc. It was there I read that my injury was the most severe of its kind and that I had less than a .02 percent chance (based on literature at the time) of walking without a mobility aid.

Needless to say, that was good info to have, but didn’t help translate what I was going through with surgeries and physical therapy (PT) into my daily life, and more importantly, what I wanted to do AFTER I recovered.

It took the other kind of online knowledge, disseminated through a site that had graphic photos and patient stories, called “mybrokenleg.com” for me to realize in a nutshell what I was in for, how long it may take, how many surgeries I may have to go through, and what I should physically, psychologically, and spiritually prepare myself for.

In other words, it was ‘patients like me’ I read about on the social medical sites, along with medical lingo I read about on the medical research sites, that informed my personal recovery narrative.

Now hospitals and other health care organizations are starting to get that people living with illness and injury want BOTH content (information) and community (empathy/connection) to encourage healing.

HIT, or web-based health information technology, enables us to access BOTH in real time, when and where we want.

But still, it’s separated from the current health care delivery system – there’s no ‘coherence’.

In other words, I [could] learn something as an informed e-patient, but then I have to go back into the brick and mortar world of health care delivery, and convince my doctor that I do know what type of ankle fracture I had, and I can name every procedure – but that doesn’t make me a hypochondriac; it is an asset that I am involved and can save us both time and money by knowing:

1. What happened to me


2. what I want in my healing process.

N: I am ALL eyes on you and grabbing onto every word. Keep going.

JMG: As with SugarStats users who are newly diagnosed [diabetics] and trying to navigate the system, I had to figure out how to talk to my docs, interview them really, to make sure they wouldn’t talk to in a way that devalued my experience – they had to be able to accept I had audacious goals, and be willing to talk openly with me about them and bring their clinical expertise, which is SIGNIFICANT, to bear in solving my big issues.

This meant, not only did I want to walk without a cane after 10 surgeries, I wanted to RUN. I was a cross country runner in high school, and I wanted to do a 5k just one more time.

My doc listened. He told me to try jogging, but warned me that I would have complications. But he listened. He ‘heard’ what I needed from my physical recovery to bolster my spirit and mentally deal with my injury.

I wouldn’t have KNOWN how to talk to him about my prognosis if I hadn’t been able to access the web-based resources that I found online, even in 2000, which was ‘early’ in the evolutionary stage of health info online.

N: You know, this is still a very early movement. Especially when it comes to changing the dynamics between patient and doctor. It’s really great that you had a doctor who listened to you.

JMG: Exactly. He’s an amazing guy – Dr. Andy Pollak at the University of Maryland Medical System (UMMC), in Baltimore, MD. He was also a surgeon for the pro football Baltimore Ravens at the time, and had an ‘interest’ in complex ortho traumatology cases.

This is what I think SugarStats offers – a chance to learn from others and carry that knowledge offline into the ‘real world,’ where things are still moving more slowly.

N: What did you say to get your doctor to look at you as a patient differently and believe that you are educating yourself via the web and TRUST that what you are reading and hearing is helpful and accurate?

JMG: Aha – that’s a tricky one. Using ‘medicalese’ or the lingo that docs use usually results first in suspicion, especially if you are in the ER requesting narcotics (which I never did)!

I was very earnest. I went back and told him I’d read about Hawkins IV talar fractures (talus is your ankle bone), and the recovery rates, complications, amputation rates, and that I wasn’t going to be a statistic.

Docs are PEOPLE like everyone else.

They listen when you are authentic. They really want to help patients who are scared, and want to live with their help and improve via their care.

JMG: And re: costs, I saw that being involved in my care meant I paid more attention. I asked about medications. I asked about dosages. I asked for clarification.

I don’t know for sure how many medical errors this prevented, but definitely some.

In our last post from our interview with Jennifer McCabe Gorman of the Health 2.0 movement and Health2con.com we hear about her own incredible journey of recovery from physical trauma and pain and how she utilized the internet to help navigate and motivate her through it all.

To find out more about the Heatlh 2.0 conference being held at the San Francisco Marriot on October 22nd and 23rd, go to http://www.health2con.com/

For more of Jen McCabe Gorman’s views go to her blog at http://healthmgmtrx.blogspot.com, and http://www.health20.nl/ is a website related to Health 2.0 based in Europe and The Netherlands.

I had the opportunity to nab a few golden moments with one of Health 2.0’s most ‘visible’ online evangelist, Jennifer McCabe Gorman last spring.

In Part 1 of 3 Jennifer shares the story of how the Health 2.0 movement got started and who many recognize the originators to be.

Part 2 of 3 addresses the value of Health Information Technology (HIT), especially to people like us seeking to better manage diabetes and cut medical costs all while encouraging the medical care system to look to more interactive ways to provide quality health care.

And in Part 3 Jennifer shares her own remarkable life changing story that came as a result of a horrific car accident in which she was the driver, and how she looked to the internet to help her get through it all.

All very well worth the read from both informational and inspirational standpoints.
—Nedrra Lanakila, SugarStats’ Executive Vice President and Director of Communications.

Nedrra (N): I’m so glad we’re talking! You and several others are doing some ground breaking work in the area of Health 2.0.

For those of us who know very little about that arena, how about we start with some basic info?

Jennifer McCabe Gorman (JMG): it’s awesome to be ‘talking’ to you as always.

N: I know that there’s a presidential mandate for medical records to be addressed/stored electronically. Is that where Health 2.0 got birthed?

JMG: Health 2.0 actually got started not from that presidential mandate specifically, but both the Health 2.0 movement and the mandate are built around the assumption that health information technology (HIT) can help improve patient care and reduce costs.

Matthew Holt and Indu Subaiya are the founders of what most of us think of as the Health 2.0 movement, which got started way back in 2006 hahah (it’s a very young movement, but old by ‘internet’ development standards).

THEY actually used the web-based terminology adopted by O’Reilly to describe Web 2.0, kind of the second wave of internet based development: online communties developing and growing rather than just people posting or searching for information and O’Reilly actually used bits and pieces from Tim Berners- Lee, but that’s a story for another day.

N: 2006 is still young to me! SugarStats attended that first Health2.0 conference in San Francisco. How many participants were there and how has it changed or grown since then?

JMG: Great question. That first conference really kicked things off. There were I believe (I’ll have to check the figures) about 200 people at the first event – and the last Spring Fling had 350, next Health 2.0 User Generated Conference is planned for Fall 2008 –October 22nd and 23rd – in San Francisco will have 1,000 so it’s really booming!

The neatest thing about the Health 2.0 Conference is the buzz. There’s just this energy of people wanting to see what’s changing in healthcare, where we’re going, how we’re using the internet to live well.

And that’s infectious at every level. You can feel it in the hallways and through the hotel.

N: So how did you get involved in Health 2.0?

JMG: I knew healthcare was ‘it’ for me. Thought maybe I’d go to med school.

But then I realized I still, despite everything, was amazed by ALL aspects of the hospital and the system in general, not just delivering care myself.

So I knew I wanted to learn about changing/improving/innovating within the current system.

I was a consultant for a think tank (The Hanover Research Council) when I started traveling to hospitals talking about best practice research.

I saw an amazing lady named Lisa Haneberg give a talk on ‘flapping your wings’ in Silicon Valley. She was riding her motorcycle around the country giving these awesome talks.

I was totally inspired and started blogging at HealthManagementRx.

Through reading other blogs I found out about Matthew Holt, The Health Care Blog and Health 2.0.

I’d been reading for about a year when I saw an announcement for Health 2.0 interns.

I jumped all over that. Called and emailed until Matthew’s wife Amanda called me back.


N: What was the early hubbub about?

JMG: Wow. It’s more like what people weren’t saying about it.

The Wall Street Journal was interviewing him. He was the early healthcare authority for online content and business development, and Health 2.0 was this amazing movement nobody knew exactly how to define. But every article, blog post I read had this energy.

They were covering all kinds of things – policy, politics, the patient experience (which cinched it for me), startups in healthcare tech, health on the web, etc.


N: Was this is 2005 or 2006?

JMG: No this was much more recent: 2006 – 2007.

We move fast.

I talked with Matthew and he said ‘Yeah, we have these companies sending us information. Can you kind of figure out some way to organize it and see what they’re really doing?’

And I said ‘Sure!’ So, that’s what I did.

I joined up in November of 2007, and the Spring Fling was in March of 2008. And wow, what a way to learn about the latest and greatest in healthcare. But also the ‘mistakes’ some firms are making.

N: What is your position with them now?

JMG: That’s really exciting. John Pluenreke and Matthew decided to ‘adopt’ me as Lead Analyst. I love the work, I love the learning and I love the people. So it’s an awesome fit.
I cover news, interviews, really whatever they need to help keep Health 2.0 moving forward.

Stay tuned for the next part of our interview with Jennifer

To find out more about the Health 2.0 conference being held at the San Francisco Marriott on October 22nd and 23rd, go to http://www.health2con.com/

For more of Jen McCabe Gorman’s views go to her blog at http://healthmgmtrx.blogspot.com, and http://www.health20.nl/ is a website related to health 2.0 based in The Netherlands.