SGO Annual Mtg 2023 Highlights - Participation

I returned recently from an exciting and informative SGO Annual Meeting. Over the next few days I will highlight research results that I found most impactful to patients, survivors and caregivers.  This blog post will be on participation and will cover how other advocates and I  participated in the meeting. 

The Foundation for Women's Cancer held a Patient Education Forum on Friday. They presented information on ovarian, endometrial, cervical rare gynecologic cancers as well as information on exercise, advocacy  and other topics. Some survivors shared the story of diagnosis and treatment. The room was filled with survivors, caregivers and advocates as well as organizations that support women with gyn cancers. 

Later that evening advocates were invited to the Foundation for Women's Cancer reception. Advocates were able to meet each other as well as gyn oncs, researchers and leadership of the Foundation. 

@SGO #sgomtgs #patientspurposeporgress ⁦@GYNCancer⁩ reception with ⁦@womenofteal⁩ ⁦@AdrienneEcana⁩ ⁦@Stigetta⁩ Ready for the annual meeting! pic.twitter.com/oUBeHE4ebJ

— DineoKhabeleMD (@DKhabeleMD) March 24, 2023

Saturday was a busy day. As a member of the SGO Communication Committee, I had the opportunity to participate in the  Education Forum Media Readiness session. I was part of a role play session on how to use different techniques such as pivot, personalize, deflect,acknowledge, and broaden when being interviewed by the media. As an advocate I am asked to comment on new treatments or breaking news and the tips shared during the session were helpful to me.

Patient Advocate @womenofteal on the panel! @SGO 2023 Annual Meeting! Communications C’tee Education Forum on media readiness #SGOmtg #PatientsPurposeProgress #GYNcsm pic.twitter.com/412oLo7Nb1

— Annie Ellis (@Stigetta) March 25, 2023

During the very next session Annie Ellis, survivor and advocate, presented Long-term survivors speak: perspectives on progress, during a Scientific Plenary Session. Annie and I  held a roundtable Zoom meeting and also surveyed long term ovarian cancer survivors about progress,  patient needs, and what ovarian cancer survivors want their doctor to know. It was so exciting to see Annie present and to hear the applause and comments that followed!

 

 

If you have questions about our abstract, don't hesitate to reach out to me for further details. 

On Sunday, the  Patient Education Committee held a advocate poster walk in which advocates were able view posters and to listen and ask questions of the poster authors. We were also given the opportunity to vote for the  Patient Advocate Hope Award winner. It was wonderful to see so many early career clinicians and researchers present their research. 

 

 I'll continue my highlight blog posts over the next few days.

Dee

Every Day is a Blessing

Reporting On This Year's ASCO Annual Meeting

I returned recently from the ASCO 2019 Annual Meeting. This meeting was one of the best I have attended. I had the opportunity to met in person for the first time advocates, physicians and nurses I had interacted with online - Facebook or Twitter.  I also met a number of advocates and health care providers from around the world - Australia, Canada, England, and Nigeria to name a few.

Dr Dickson and I - #ASCO19

I was invited to speak during a ticketed session titled A Fireside Chat What Patients Want From Providers in Gynecologic Cancer on Saturday afternoon.  My partner was Elizabeth Dickson-Michelson, a gynecologic oncologist. I shared what the gyn cancer patient needs and how to advocate for yourself and others while Dr Dickson focused on how health care professionals could provide the services both emotional and physical that patients need. We also shared the results of two studies, The WOCC Every Women Study and the Needs of Women Treated for Ovarian Cancer : Results from a #gyncsm Chat . I am extremely appreciative of the support provided to me by Rutgers Cancer Institute of New Jersey which allowed my attendance at this meeting.

Before and after my presentation I was able to attend a number of very informative sessions in gynecologic cancer, communication and social media. If you didn't catch my live tweets from the meeting, over the next few days I will share information I learned on this blog. I will cover the Gyn Cancer Education Sessions  (Pharma to Table, Are We Hitting the Bulls Eye with Targeted Therapy,Wanna Get Away -Continuous vs Treatment Holidays, The More things Change OC Edition and Gyn Cancers: Is It Time to Put Away the Knife ) and two sessions dealing with communication ( Tweets Chats & Posts and Navigating a New Cancer Diagnosis), as well as an overview of the Gyn Cancer Oral Abstract Sessions and the Poster Discussion sessions. 

So Stand by --- or sit ---  more info is on its way.

Dee
Every Day is a Blessing!

  

I’m Gearing up for Medicine X and You Should Too

In less than a month I will be flying out to California to attend the Stanford Medicine X (MedX) conference as one of this year's e-patient scholar delegates. (You can find a list of this year’s e-patient delegates here.) I so happy to be taking part in the MedX | IDEO Design Challenge.

I can almost see your faces as you read this. You are thinking, “What is an e-patient? What is Med X?” Why do you want to attend?”

What is 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. (Stanford MedicineX definition) 

I wrote about being an e-patient in a February blog post. 

What is MedX ? Who is involved with MedX?

 “Medicine X is a catalyst for innovative ideas about the future of medicine, healthcare, and wellness. The initiative explores how emerging technologies will advance medical practice, improve health outcomes, and empower patients to be active participants in their own care. The “X” is meant to encourage thinking beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health and well-being.”

Creativity combined with healthcare. How amazing is that? Pretty amazing I think and one of the main reasons I applied to be an e-patient delegate this year. The MedX conference is an academic conference but it is designed for everyone to participate in.  You will find researchers, physicians, mental health-care providers, designers, engineers, technologists, and patients sitting side-by-side learning, creating and sharing their stories and ideas.  I am so excited that the patient voice is being included.

Those stories and ideas will be shared with others through Twitter, Facebook and participant blogs. But you can attend this conference virtually and not miss any of the keynote speeches, etc  by registering for free Global Access. You can register for free at http://medicinex.stanford.edu/2014/08/04/announcing-global-access-program-2014/

What is the IDEO Challenge?

On September 4^th, Stanford Medicine X and the design firm, IDEO will bring together patients, designers, researchers, and health-care providers to collaborate in teams to improve patient care.  I have been learning about the design process and for the past few days I have been developing problem statements that my team can work on the day of the Challenge.  I will be focusing on problems that patients with cancer face but the ideas can be applied to other chronic illnesses as well. 

When and Where is MedX? The Stanford Medicine X conference is held September  5-7, 2014 in Palo Alto, California.  The IDEO Challenge is held the day before the conference.

Why do I want to attend MedX? I have been an ovarian cancer advocate for nine years. I've written about my journey with the disease. I spoken about ovarian cancer symptoms and blogged about research into better treatments and an early detection test. I’ve co-moderated a monthly tweet chat (#gyncsm) for gynecologic cancer survivors. But it has been years since I worked as an engineer and been personally involved with the creative research and design process. MedX is the perfect place to blend advocacy with innovation and I can’t wait to be part of the conference and meet other e-patients.

I hope many of you will join me virtually it should be an  incredible experience. 

Dee

Every Day is a Blessing !

From Family to Frankly Speaking to Patient Centricity

It sure has been a busy week for me. We returned home from seeing my daughter and her family in Kansas early in week. It was great attending my son-on-law's change of command ceremony

and being able to spend time playing and reading to my grandson. They will be moving in two weeks to California for Andy's next assignment.  I thrilled that I will be able to visit them in sunny California later in the year.

Then I jumped right back into  my role as a survivor and advocate. On Wednesday,  the Cancer Support Community - Central New Jersey invited my gyn-onc,Dr Gibbon to present a noontime Frankly Speaking about Gynecologic Cancers presentation. There were about a dozen women in the audience so it was very easy for it to be more of a chat with questions and answers than a lecture. Dr G did a great job making the science of ovarian cancer and it's treatments understandable. Some of the topics she spoke about were risk factors, current treatments, genetic testing, precision medicine, vaccine therapy and parp inhibitors. 

Thursday I spent time prepping for my participation at the 10th Annual Patient Summit USA 2013. I was invited by Wego Health to be part of a panel discussing patient centricity. 

The Summit day arrived on Friday.  I drove the hour into Philadelphia to the  Hilton and was able to attend the morning sessions which included talks on understanding your patient as the end-user, proving the value of patient programs and an excellent presentation by Emily Freeman, Pfizer on Shared Treatment Decision Making(STD). STD brings the patient on an equal standing to the physician regarding treatment for chronic illnesses. Then a bit of deja vu occurred when Walter Berghahn spoke about supply chain safety with a focus on drug packaging. ( I worked in packaging for a number of years.) He highlighted ways to achieve better patient adherence. 

At lunch I met up with the Wego Health team and health activists. I am in awe of the advocacy work and endevours of these activists. Then it was time to take the stage with Melissa Barnhardt, Wego Health, Tiffany Westrich an autoimmune rheumetoid arthritis activist ( www.iaamovement.org)  and Scott Benner a diabetes activist (www.ardensday.org). 

I offered the following recommendations to the audience from the pharmaceutical industry:

• Patient centricity is about treating the whole person not just the disease.
• Speak to patients in laymen's terms.
• Use infographics to explain information and processes
• Reach out to Advocacy groups to diseminate information.

I am so pleased to have been a part of the movement to give patients a voice. Thank you Wego Health.

Dee
Every Day is a Blessing!