MedX 2014 : A Year Later

Last year, I had the privilege of attending the Stanford MedX Conference as an e-patient and IDEO Challenge participant. I wrote two posts about that experience here on my blog (MedX - A Place for Conversations  , Design Thinking and Health Care- My MedX IDEO Challenge Experience)

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! 

 

MedX - A Place for Conversations

A week ago I was still in the midst of experiencing Stanford MedX. MedX was a conference like no other conference I had ever attended as an ovarian cancer survivor and research advocate. In the words of Larry Chu, MD executive director of MedX , “MedX seeks to unite all health care stakeholders in a conversation about the future of medicine.” I saw those conversations taking place every day of the conference. There were conversations between people who worked in the pharmaceutical industry and patients, physicians and patients, caregivers and designers, and patients and engineers. They didn’t just take place on stage or in the workshops but in the hallways at Stanford, on the benches outside during lunch and break and at the hotels where participants stayed.

I was lucky to have conversations with people I knew from the twitter world and the blogosphere by the pool at the Sheraton where I was staying. I was thrilled to meet and have lunch with Dr. Ann Becker-Shutte, who is the mental health moderator for the #gyncsm chat/ community that I moderate. She had conversations on stage, in workshops and in the halls of Stanford about depression and chronic disease. I had conversations with high schooler Jack Andraka (@jackandraka) who invented an inexpensive cancer detection test , Susannah Fox (@SusannahFox) whose website I have been reading for a long time, Marie Ennis-O’Connor (@JBBC ) whose excellent advice about twitter I have followed and Dr Peter Yu (@YupOnc)president of ASCO about my experience of attending ASCO as an advocate.

One night after a busy conference day I had the pleasure of spending time with Colleen Young (@colleen_young, #hcsmcs) , Janet Freeman- Daily(@JFreemanDaily, #LCSM), Annette McKinnon( @anetto, and Meredith Gould (@MeredithGould, ) and Ann. As online health care community leaders we shared ideas about how to better serve and reach our communities. After meeting these women in person I know that this is one conversation that will continue.

Sharing ideas and relaxing by the pool 

I had different types of conversations with other e-patients. I learned the best way to attend MedX  and how to not be nervous on stage from the e-patient advisors. My room mate, Meredith Hurston (@meredithhurston), and I had some fun and some serious conversations before we collapsed from sheer exhaustion after a busy day at the conference. When I spoke to Matt Dudley, I told him I was moved to tears by his Ignite talk. There were hugs with other patients when they finished their presentations when words seemed inefficient. Having a niece with Type 1 diabetes made it easy to strike up a conversation with the e-patients who had diabetes. And these are only a few of the interactions I had.

I also had conversations with the reps from the 3-d printing companies. I am amazed at the quality and usability of the products those printers produce. I spoke with Barrett Larson (@Barrett_Larson), Leaf Healthcare about his device designed to monitor patients and signal a change in position to prevent bedsores.  This made me wonder about  about how it could be used for Alzheimers patients so we talked about that too. I spoke to Tal Givoly  (@givoly), Medvizor, about the inclusion of gyncecologic  Cancers on the Medvizor website. And I spoke to Joseph Kim (@JoPeKim), Eli Lilly, regarding ways to increase the participation of patients in clinical trials.

I learned information about other chronic illnesses that I might never have known had I not attended MedX such as what difficulties other patients have functioning at work or adjusting to things when first going to college or getting data from instruments that record blood sugar. I also learned about the difficulties physicians face when given only 15 minutes to see a patient. 

This is just a snippet of the hundreds of conversations I had at MedX. It does not really do justice to the wonderful interactions and things I learned but I hope it provides a picture of how conversations can affect the future of medicine – one conversation at a time. I know the conversations I have had will stay with me for a long time.  

 Dee

Every Day is a Blessing! 

Being an e-patient

Over the past few years I have used the Internet to share my story and information on ovarian cancer symptoms and research. I write this blog, tweet , share info on facebook and now co-moderate the #gyncsm tweet chat on Twitter. In addition to sharing information on the Internet I also learn from it. I take part in webinars on ovarian cancer treatments and watch U-tube videos provided by different ovarian cancer organizations.

When I started to follow Stanford Medicine X on Twitter and Facebook I learned that there is a name for what I am . I am an e-patient.  

ePatient (e!pa!tient/e‘p"SH#nt/): 1. A health consumer who uses the Internet to gather information about a medical condition of particular interest to them, and who use electronic communication tools (including Web 2.0 tools) in coping with medical conditions. 2. Friends and family members (e-Caregivers) who go online on behalf of patients. (MedX definition) 

In January, I applied to be an e-patient at the Stanford MedicineX conference in September. I became a finalist and had an interview, Google Hangout style. I'm glad I was used to doing Google Hangouts with my daughter and her family so my nervousness was just with having the interview. I was thrilled when I opened my e-mail on February 2nd to learn I was chosen to be a delegate and will take part in the Design Challenge working on a patient designed project with other healthcare stakeholders and the firm, IDEO.

On Monday February 3rd, Dr Larry Chu announced the winners on the MedX blog. When I read the list of delegate names I was happy to see women I know through the #bcsm chat and other patient groups. I can't wait to meet all of them in person.

I will have some work to do before the conference and I look forward to spending time and learning from other e-patients like myself.


Dee
Every Day is a Blessing!