While other
e-patients prepare for the
MedX Conference this year I started to reflect back
on my experience and what impact it has made on my role as an e-patient and
cancer advocate.
Connections With Other E-patients
I met Janet Freeman-Daily for the first time at MedX. Janet, a metastatic lung cancer patient, and one of the best lung cancer advocates I know. After the conference Janet and I continued to
interact via Twitter and e-mail. In June, at the ASCO Annual Meeting in Chicago
I joined her and a few other lung cancer advocates for dinner. Other ovarian
cancer advocates might want to limit their interacts with only other ovarian cancer advocates
but I have found that interacting with other cancer advocates from MedX like Janet and Marie Ennis-O’Connor
allows me to be an empathetic well-rounded cancer advocate. It helps to
understand the latest treatments for other cancers as the treatments are
becoming more mutation based than organ based.
While at MedX I didn’t just develop friendships with other
e-patients who were cancer survivors . I learned what is was like to live with rheumatoid arthritis from Annette McKinnon, the importance of patient safety from Meredith Hurston (my
roommate), the difficulties patients with prosthesis experience from Joe Riffe and our rights as patients to use and analyze our own data
from diabetes e-patient, Doug Kanter.
Putting It Into Practice
I read two books and a number of articles on design thinking
in preparation to the MedX IDEO challenge. (Thanks Dennis Boyle.) But actually putting that type of
thinking into practice at the conference was invaluable. I loved working in a
team to come up with a solution to my problem: How Might We help cancer survivors understand what to expect after treatment ends?
To this day I find myself putting design thinking into
practice as the co-moderator of the #gyncsm community / chat. I have even used
it when discussing problems and their solutions in the 55 + community I belong
to. When I read health articles online I
wonder if the authors asked the patients/survivors what information would be important
to them. I actually asked a question along those lines at an ASCO Annual
Meeting session on integrating survivorship care plan information into
electronic medical records. By the way , the researchers said they had not
asked the patients what information was important to them. I suggested they may
want to ask them in future studies.
I hope that all the e-patients who attend this
year’s Med X conference will not only share their stories with others but
will be open to the stories of the other conference attendees. Those stories may move you to tears or make you laugh but I assure you they will make an impact on your life. Oh and don't forget to take Zoey for a walk!
Dee
Every Day is a Blessing!
