MediCope Crowdsources Cancer Patients’ Wisdom
I recently had the pleasure of interviewing Boaz Gaon, co-founder of the MediCope Mapping project which aims to revolutionize the cancer journey by collecting helpful insights from survivors and caregivers and making them accessible to patients over their mobile phones. I began by asking Boaz to tell me about what led him to create this site.
In 2000 my father was diagnosed with cancer of the kidney. A year after that he was diagnosed with Leukemia and eventually, in 2008, with lung cancer. He passed away that year after a long and frustrating journey – especially in light of that fact that he was President of the Israel Cancer Association! despite having access to the best physicians in the world, it was the experience of others that we as a family found most useful again and again. However, it was incredibly difficult to access quality community wisdom via search engines or social networks. What we did find was either knowledge that was not experience based (search engines) or not event-specific (social networks). All this led to MediCope. Our approach is to capture, curate and send out quality and event-specific insights from patients and families, to patients and families. I think my father would have approved 😉
I wondered how Boaz determined the validity of the insights and was reassured to see some familiar names on his editorial team.
Great question. We’re extremely fortunate to have brought together a rare group of women and men who’ve dedicated much of their lives to helping other patients and families in need, thoughtfully and compassionately. This group, whom we call our Editorial Community, include community leaders such as Dikla Ben Zeevi (California), Cherie Mathews (Texas), Brandy Slagowski (Utah), Lori Max-Rubiner (California), Dr. Sharon Bober (Massachusetts), award winning bloggers AnneMarie Ciccarella, Jackie Fox, and many amazing others. In addition we’re incredibly lucky to also count as our community members some of my favorite medical practitioners on earth – namely nurses such as Judi Hiershfield-Bartek from Dana-Farber, Dr. Ilana Kadmon from Hadasa Hospital and the Israel Cancer Association, Becky Trupp, co-founder and vice president of The National Coalition of Oncology Nurse Navigators and great others. Once an insight is submitted from the community it is shown to our Editorial Community and a lively discussion begins which ends up – with the insight being correctly entered into the knowledge base.
I then asked Boaz about his plans to extend the site to encompass all cancer diseases, but first I was curious why he had chosen to focus on breast cancer first?
As you read above, I have a personal score to settle with at least three other cancers: Kidney, Leukemia and Lung. That said, we chose to begin with breast cancer for two main reasons: first, the incredible interconnectedness and devotion of the breast cancer community which humbles us daily; and second, since we’ve read horrendous statistics about what Dr. Susan Love calls The Collateral Damage of cancer in general, breast cancer in particular. It is unacceptable to us for example that 40% of breast cancer patients deplete their savings during their cancer experience. There must be a better way and we believe that some it has to do with making non clinical related wisdom (financial, emotional, legal, logistical, side effects related etc.) which originates in communities and can be made available to the right patients and families at the right time. We’d also love to be able to Map Out Breast Cancer – or in other words, to create the first ever Breast Cancer Timeline that includes not only clinically driven events such as chemotherapy and surgery, but also events such as Choosing a Caregiver, Telling Friends and Family, Cutting Your Hair, and more.
Finally, I asked Boaz to tell us how readers can get involved with the project.
Please share your insights with patients in need! It’s really simple to do at Medicope Also, I am always thrilled to communicate personally with any community member who will want to step up and help us create a world in which even the most challenging experiences in life become easier to cope with – by way of community based timelines and corresponding wisdom. Write to me at email@example.com. I am eager to hear from you – and NEVER GIVE UP.
My thanks to Boaz for today’s interview. I wish him every success with the project, and encourage you to get involved too.