Patient Advocacy: A Chat with Margaret
As part of our Advocacy Program, we were fortunate enough to have Margaret visit our office and share her story with us. Her passion, energy and ability to stand tall when many of us might falter, was nothing short of remarkable.
Some of us have known Margaret for many years, going back as far as college — so there was a deeply personal element to her visit and we are so glad that she is doing well. Folks like her inspire us to stay the course we have chartered.
During her visit to our office, I gifted her a pair of #pinksocks to recognize the energy and passion she has to help others.
I hope you find her video and interview about her journey insightful.
If you would like to share your story with us, we would be honored. Please contact us at advocacy@carium.com.
-Nirav
Tell us a little bit about yourself
I’m a glass-half-full, mother of 2 (teenagers!) who works hard, has amazing family/friends and I was diagnosed with breast cancer.
What gaps if any, did you experience in navigating your healthcare journey?
I’ve been a historic Kaiser patient and I took for granted that all of my medical information was in one system and easily accessible by any doctor that I needed to see. With a new job and new insurance this recent experience required me to become a ‘Program Manager’ for my care. I needed to request (multiple times) hard copies of tests, MRI, blood work, biopsies, etc., as my doctors did not speak to one another. I had to fill out the same paperwork — multiple times. I had to repeat the same information — multiple times. It was cumbersome and archaic and when you’re sick and dealing with an illness, driving your health care to this degree, just makes life more difficult.
What tools do you wish you had available to you at the beginning of your journey?
A summary of the process, a clear understanding of each doctors role and responsibility and a timeline of how this would look and what would be needed. My network of family and friends provided a wealth of information and doctors did provide many websites to search, but the data can be overwhelming and misconstrued if you’re not a nurse or physician! I wish I had a vault to keep an electronic copy of my health information so I could share with my family (all over the globe). Our family history with cancer is alarming and the ability to share my lab (blood, genetic screening, etc.) results, doctors notes, and any questions I had, with my cousins/siblings in Europe and across the US, would have been timely, helpful and supportive. I could not scan and send an always-up-to-date, paper filled binder to everyone — too time consuming and impractical. What I need is a simple communication tool to use with my network of family/friends/doctors/pharmacies/insurance — 1 place to keep track of all the data, as my children will need it as well.
What words of advice would you give to someone going through a similar experience?
Know yourself and if you need help, ask. Be informed and ask many questions and if you’re overwhelmed, find a spouse/friend/family member to be your voice — your advocate.
By sharing your personal story, is there anything you hope to achieve?
Improvement… change… In the age of digital transformation, the healthcare system is very far behind. While security and privacy will be critical there is a need for a tool to help people manage their health more completely. Today, when you are working through an illness, the entire health process seems slow, non-transparent and frustrating.
