Sunday, September 14, 2014

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! 


Tuesday, September 9, 2014

Design Thinking and Health Care- My MedX IDEO Challenge Experience

Earlier this year I was chosen to be a MedX e-patient delegate and participate in the IDEO Challenge.  During the Challenge an e-patient team member brings a problem they need solved to a team of researchers, physicians, other health care providers, anthropologists and designers . Each problem statement begins with the words "How might we...?".  I knew this was something I wanted to do. I love problem solving and enjoyed creating products when I worked as an engineer.  But at the same time I was a bit nervous about how we could accomplish anything in one day.

Before we met in person, Liza Bernstein ( @itsthebunk) a MedX Patient Advisor and Challenge participant gathered the other Challenge e-patients  Alan Brewington (@abrewi3010), Doug Kanter ( @dougkanter), Annette McKinnon (@anetto),  IDEO founder Dennis Boyle (@dennisjboyle) and myself for multiple Google Hangouts. We had a chance to meet each other and learn what to expect from the day. We had homework to do too. We were asked to read books on Design Thinking and articles about how design thinking has solved problems in business and education. We were also asked to develop 4-5 of our very own "How might We...?" statements related to our health care. When we all got together at IDEO headquarters on Thursday we were ready  hit the ground running.

The day began with a tour of the IDEO facilities and a review of the design thinking process. I was introduced to my team members as well as Ariana and Jayant from IDEO. They asked me to tell my story about my experience as an ovarian cancer patient and survivor. Once they knew my background, I shared the four "How Might We"" (HMW) statements I had developed for the day. As it turns out the initial HMW statement that I used on my MedX application didn't make the cut for my personal list that day.

What followed may be one of the most patient centered experiences I have ever had. The team members asked me questions, lots and lots of questions about my treatment, how I felt at various times during my treatment, what it was like living with the possibility of a recurrence and even questions about the effect my disease had on my family. Many of these questions were about things my care team which I think it top notch had never thought to ask me. Most importantly my team listened. They didn't judge.  They were able to keep their pre-concieved notions on how I might feel or handle a situation out of the conversation. Sometimes we got bogged down in discussing which word would best express what I wanted to say but we stayed on track most of the time. As my team members listened, they jotted down quotes on Post-it notes using Sharpies and placed them on a white board.

The beginning of the  process.
 Eventually, we focused my needs on this final HMW statement.

HMW help cancer survivors understand what to expect after treatment ends. 

But there was more work to do. Next, came the brainstorming session where the sky was the limit. Every single member of the team brought ideas, once again on Post-it notes, to the discussion board. The board was covered with statements and drawings to solve my problem.The most difficult part at this stage was deciding as a team which ideas we should develop into a prototype. And you know what? All the team members turned to me and said, "What would satisfy your needs as a patient finishing treatment?".  "WOW, " I thought to myself, "This is a patient-centered process."

We combined a few components to answer my HMW problem. They included items for the doctor's office and for use at home.

  • An "I'm in Control" Box for tips from survivors and questions from patients (doctor's office).
  • An "I'm in Control" Bulletin Board( doctor's office) to share information and answer questions  from the box.
  • A Gift Box given to the patient on the last day of treatment containing a "Have No Fear" bracelet; a book of inspiration from other cancer patients; a temporary "I am in Control" tattoo and a patient newsletter. The newsletter contains a daily calendar for the first month after treatment which includes information about how the patient might feel (both physically and emotionally), what side-effects they might be experiencing, nutrition and exercise tips and when to call the doctor regarding symptoms etc. These newsletters with daily tips/ information would continue to be mailed home each month after treatment. 
  • For those patients with internet access they could opt to receive the information contained in the newsletter in an application for the computer or i-Pad. The patient may also choose to keep track of how they are feeling and any symptoms they are experiencing on the app. If they desire to, they can share this information with their doctor via e-mail. 
Some of the props / components to solve my HMW statement on our brainstorming board.

The last step of the day was to take the prototypes and developed a skit around a patient's last day of chemo. I played the patient while my team members played doctors and nurses in an oncology office setting. Everyone was pleased with the prototypes and the skit but none more than me. I was thrilled with what we had accomplished in 7 hours.

After experiencing the Challenge , I learned how much you can accomplish when all the team members know the design thinking process, are invested in making the process work and are guided by individuals who know and care about the process and outcome.

Here is my next HMW statement.

HMW facilitate design thinking in all aspects of patient care. 

A special thank you to Dennis, Ariana and Jayant from IDEO for sharing the IDEO facilities and their design thinking expertise with me. And a warm thank you to my team Simon, Rona, Javed, Andy and Lisette for being part of my team and for listening so closely to my story and needs. I couldn't ask for better team members.
Some of the members of my Ideo Challenge team and I

Dee
Every Day is a Blessing!
 


Tuesday, September 2, 2014

Ovarian Cancer Awareness Month - Yes, there are symptoms

In the United States September is designated Ovarian Cancer Awareness Month.

Nine years ago I had just started chemotherapy for Stage 3b Ovarian Cancer. Back then I didn't know very much about ovarian cancer and the symptom consensus statement (2007) hadn't been written yet.

Today many organizations like the national organizations- OCNA, NOCC, OCRF as well as numerous smaller foundations are concentrating on sharing the symptoms of ovarian cancer with women in their communities.

Just in case you miss some of those incredible awareness campaigns,  the symptoms of ovarian cancer are:

  • Bloating
  • Pelvic / abdominal pain
  • Feeling full/ difficulty eating
  • Frequent urination


Other symptoms include fatigue, back pain, constipation and menstrual irregularity.

If you experience symptoms for more than 2 weeks please see your gynecologist.


Dee
Every Day is a Blessing!

Sunday, August 24, 2014

205 years of Survivorship

205 Years!

That is how many years of ovarian cancer survivorship was present at a luncheon at the Crowne Plaza in King of Prussia, Pennsylvania yesterday.

Since the early 2000's,  a group of ovarian cancer survivors who met online (ACOR, Inspire, Facebook, Smart Patients) or at the OCNA conference,  gathered together in one of the women's home town for a fun weekend get together. The group has met in a variety of locations from Canada, to Missouri, to Kentucky, and Maryland.  This year when I learned the get together was in Pennsylvania  a little over an hour or so from my house I knew I had to attend and meet so many woman I admire.

So off I drove yesterday morning under grey and stormy clouds to have lunch with my teal sisters at the Annual Ovarian Cancer Survivor Friends Get Together. The Luncheon was sponsored by the Sandy Rollman Ovarian Cancer Foundation as part of their mission to bring survivors together.  Robin Cohen CEO and co-founder of the Foundation was there to welcome all the women to the luncheon and the Philly area.The food offered a taste of Philly from Hoagies to Cheese Steak Sandwiches to Tastycakes.  Thank you Robin and SROCF .



The food was delicious but the best part of this day was meeting so many wonderful survivors in person. They came from near - Pennsylvania and New Jersey and far - Maryland, Kentucky and Illinois and Kansas.  There were survivors who have helped to raise awareness of the disease in unique ways -Teal Toes, acted as patient reviewers of DOD grants, presented posters at AACR and taught medical students through Survivors Teaching Students. Most of the women have been there online offering support and prayers for others diagnosed with the disease. As we ate we talked about hair loss, neuropathy, clinical trials and tumor storage. We questioned what makes survivors of 5+ years different from other women diagnosed with the disease. We laughed.  And as we looked at photos of past get togethers we teared up remembering women who were no longer with us. In that room in PA were some of the most active and inspiring ovarian cancer e-patients in the country.

Before the day ended I got to do something I have wanted to do for a long time. I went up to Helen, a 20+ year survivor of ovarian cancer, gave her a hug and told her "Thank- you"for being there for me when I was in treatment. She responded to the very first post I wrote on the ACOR listserv in 2005.

I would never have been able to say thank you in person without the efforts of Anna Marie and Yi who helped to organize the event. Thanks Yi and Anna Marie.

I can't wait to see all of you next year.

Dee
Every Day is a Blessing !!!
And I am truly blessed to have met Annamarie, Annie, Barbara, Carey, Carol, Christine,  Cindy, Cynthia, Helen, Jan, Judith, Nan, Pat, Susan,Teresa, Terri, Yi, Yi from PA

Wednesday, August 6, 2014

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 4th, 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 !


Monday, August 4, 2014

It Is Worth It


 Last week, I turned to my husband and said “I’m so happy I am having lunch with M today. It is great to have a friend who is not an ovarian cancer survivor.  Hopefully we can be friends a long time. “ Then I got teary and said “I am so tired of making friends and losing them to cancer” He gave me a big hug, I took a deep breathe and walked out to the car to meet M.

On that day I was thinking of my friend S. W. whose funeral I attended the week before. I was thinking of her husband and her two teenage daughters. And I was feeling sad for the friend that I had lost. And I was a bit angry too.  I started to wonder if it was worth it spending time working on friendships that are ending so quickly.

S.W.  and I  were more than two women who had ovarian cancer and were treated by the same gynecologic oncologist.  Sure that is how we met but with time and effort a deep friendship evolved. It wasn’t easy. We both had family and advocacy commitments. She had work commitments and treatments. Yet we still made a point of checking in with each other on Facebook.  And we made a effort to carve out time to have lunch with each other. We worried about each other during super storm Sandy.  We celebrated the new car she bought and she shared with me how she hoped she would put lots of miles on that car.  We talked about the college tours she was taking with her daughter and how wonderful our husbands were. We were more than just two women with cancer. We were friends.

Then I started to think about the friends whose lives were lost due to ovarian cancer. There was Sharon who had the best sense of humor. She would have made a great stand up comedian. And then there was Rita. We used to stand outside after our support group and discuss college football never realizing how much time had passed.  I would meet Pam for dinner before our support group and she shared her love of Jimmy Buffet and traveling. One year we both went on cruises to Alaska and when she came back she gave me the best tips on what to see and clothes to bring.  There was Kim who loved wrestling. I still laugh when Fandago shows up for a WWE match on TV as I remember how she loved how he pronounces his name -  “Faaaan dangggggg OOOOOO”.  There was Deidre who helped me decorate a table for a Tea. I never asked her to help but she just jumped right in and brought things to add to the design.  I could go on and tell you about Gail, Ellen, Denise, Cindy, Jayne , Nicole , Courtney and Shirley. All of these women were special to me. They were special for their faith, courage and talents. I am not sure if our paths would have crossed if it were not for ovarian cancer .

One of the most difficult parts of being a cancer survivor is losing others diagnosed with the same disease. I‘ll be honest with you it hurts and it makes you very aware of your own mortality. But when I stop and think I realize that my life has been made richer because of these friendships.


Dee Sparacio
Every Day is a Blessing!

Tuesday, July 29, 2014

Clap Along ...

On July 29, 2005 I was diagnosis with Stage IIIB serous epithelial ovarian cancer.Since that day I have had two surgeries, participated in a clinical trial( 3 if you count the ones that used my tumor tissue), 16 chemotherapy treatments, countless blood tests, CT scans and doctor visits.Today, nine years later,  I am especially thankful for the wonderful doctors and nurses at CINJ, for my husband, children, family, friends and for my faith.

So join me today and "Clap Along "and be happy.



Dee
Every Day is a Blessing!