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.