4. MIRACLE DRUG KILLS
YOUNG GIRLS
Clear-cell adenocarcinoma
(CCA) vagina or cervix
40 times higher
5.
6. Neonatal death
F
8 times higher A
Pre-term delivery
4.7 times higher M
Loss of second
-trimester pregnancy
I
3.8 x higher L
Ectopic pregnancy
3.7 times higher Y
Stillbirth, Infertility
2.4 times higher
13. Patient Centered Health IT
Traditional Model – Provider First
New Model – Patients First
“Ix” is effective, more affordable, and
with less side effects than “Rx”
Editor's Notes
EpatientsLike many e-patients, I have my own personal story that started even before I was born but rather than defining me it is what has given me the skills and experience to not only participate in my health care but help to design and hopefully transform entire systems of health care.
DES Background Slide 1DES a synthetic estrogen was the standard of care from the 1940’s to the 1960’ to prevent miscarriage. My mom, along with over 3 million other pregnant women, and another 6 million of their children was given the medication , even though there had never been any studies that showed it worked. One of my sisters and two of my cousins and I were exposed
DES Slide 2. In the 1970’s a mom in Boston asked if the rare cancer in her daughter could be caused by the “medicine” she was given during her pregnancy. Thankfully her doctor was curious but sadly he soon discovered 8 other girls have a cancer that usually only impacted women in their 60’s and he published his findings in 1971.
Slide 3My mom kept amazing records and had a copy of the RX so they knew I had been exposed. When I was 13 I was I was first evaluated for possible cancer and it was pretty scary. Since it was a teaching hospital I learned as much as the residents did since they talked in front of me. I even wrote to the doctor who did the original research and he responded to me.
Slide 4Thankfully I was fine. Mostly I just lived my life and never thought of myself as a DES daughter. I was a national merit scholar went off to USC in Bio-Medical Engineering, went to OSU in construction engineering. Worked as a fire-fighter EMT, worked for Penn and remodeled a seminary
Slide 5FAMILY In my 20’s none of my cousins or my sister could get pregnant and research started to appear that DES had also affect our ability to get pregnant and carry a baby to term. I was told that I wouldn’t be able to have my own children and I was crushed because at the time I was part of a spiritual community where everyone had kids and I didn’t think it would be fair to marry if I couldn’t have them.
Slide6So when I graduated from college I went a few blocks down the street from where I grew up and got a job at Microsoft in the late 1980’s It was so much fun and the stock went through the roof in the early years increasing almost 5000% after I arrived.. At the same time however another chart was going up at almost the same rate.
Slide 7In college I had encouraged a couple of friends to come out who were returned LDS missionaries and they both got sick and died while I was working at Microsoft. I already had learned about death related to sex so I quit my job and went to work in the AIDS community as a housing developer. I had to calculate how fast people died to determine how much housing we needed.
I sourced over 2 million and developed the first independent housing for people living with AIDS in the US – but I also howevergot death threats on my business cards when I would go into neighborhoods and try to educate them about the project. People were dying and we developed a community of care givers, patients and providers that change health care.
Slide8Went back to Microsoft but by then I had been transformed and couldn’t keep from trying to advocate for other people around health care.. Our group assistants didn’t have any health insurance so I accidently co-founded WashTech a union for high tech temps based on the carpentars model of temp workers having health care coverage.. I also co-founded another non-profit for women in wome development and remodeled a Catholic Seminary into a Medical School
Slide 9I shifted to working in health informatics since Microsoft wasn’t as appreciative of my activism as I had hoped.. Then they discovered that DES caused an increase in breast cancer and my mom got breast cance. .. We had an online blog and when it metasized to her liver in 2002 we used an onlne family blog to keep everyone informed and I found a phase II study at Mayo for her and she recovered.
Slide 10By then I had learned that you needed to have the govt and the grassroots working together for change. My passion for patient centered health care and activism came together when a doctor ran for President and I accidently ended up being his State Volunteer coordinator andI had to quit my IT job.
Slide11When the campaign was over earlier then we had expected I went to work at Group Health Cooperative – where in 2005 we implemented the first EHR that gave the 620,000 patients the ability write to their records before the providers even could.. 620,000 patients and over 1000 providers has the highest rates of use by patients in the country. Over 40% of all primary care visits now happen remotely via the phone or telephone encounters.
Slide12I co-founded a startup and won 2 million in funding and I started to be asked to sit on various committees and boards. in 2008 I was asked by HHS and the Office of the National Coordinator to stand up the National ehealth Collaborative and I created the first position for a consumer advocate at ONC although it took them a few years to fund it.
