#PatientInsights: Sharing Cancer Tips and Tricks Through Social Media

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Throughout my treatment, peers have helped me learn about my diagnosis, digest information, and move forward. I was lucky to have a team that knew extending the time of my Perjeta injection could have a positive impact on my quality of life. However, I also know that there are other women who are having a similar experience and may not have this specific piece knowledge within their team. I hope this finds you! I want to share the tidbits I gain from my experience so that all patients have access to the same knowledge, regardless of where you are being treated.

—Cat, a metastatic breast cancer patient

The key to defeating cancer is the ability of doctors, researchers, and patients to share knowledge and insights with one another. In the United States, 1.6 million people are diagnosed with cancer each year. An entire population of patients and families is gaining insights into their cancer every day, but these are not being effectively shared. To end cancer, it is imperative that we create a space for patients to be equal partners in the data sharing conversation.

If the annual number of new cancer patients in the U.S. were evenly distributed, there would be an average of 114 new patients per U.S. oncologist every year. State-of-the-art cancer care is defined as the collective knowledge of the top experts in the field, but doctors are still extremely limited in their capacity to share patient treatment rationales with one another. Therefore, insights gained by patients and oncologists remain trapped within the cancer center in which they were discovered, or even within the mind of a single doctor.

Currently, it takes 17 years for new medical knowledge to diffuse throughout the general patient population. Knowledge gathered for each cancer treatment has the power to save and improve lives. It is inefficient for the dissemination of research and treatment insights to be allocated to doctors and researchers alone.

Cancer Commons is committed to closing the gap between research, treatments, and outcome insights in cancer. We are transforming cancer care for patients. By providing a platform for patients to share tips that could increase their quality of life, or their number of viable treatment options, we will evolve cancer care from treating individual cases separately into a vast network of patients, doctors, and researchers learning from one another in real time.

Aligning with these efforts to support patient-empowered care, Cancer Commons is excited to announce the #PatientInsights campaign. Patients, doctors, and caregivers will instantly and publicly share treatment insights. If you are interested in sharing your insights,  we invite you to post to Twitter and Facebook using #PatientInsights. We are excited to learn from you!

We would like to thank @catbrennan for making the first contribution to the #PatientInsights campaign with her experience being treated for metastatic breast cancer:

Cat patient insight

We asked Cat about the story behind her insight, and why she feels it’s important to share:

Cancer Commons: What was the rationale behind changing your injection time from 30 to 60 minutes?

Cat: A friend introduced me to Facebook groups where I could ask questions of other breast cancer patients. However, I don’t see a lot of information going through these groups about Perjeta injections because people generally respond better to Perjeta  than chemo. So when bad reactions do happen, it is tough to find information. I was talking to my nurses in the clinic about the bad side effects I was having. They suggested extending the duration of the injection, and it significantly decreased my side effects.

Cancer Commons: Have you benefited from peer insights?

Cat: Yes, absolutely. They help me with more than just my treatment. As a metastatic patient, there are a lot of people on Facebook sharing information about quality of life stuff. It is helpful to see other people’s roadmaps to be able to shape my own.

Cancer Commons: Can you share one of the peer insights that has benefitted you?

Cat: I had a really great conversation on Twitter with a few girls in the UK about joint pain (because I am on Arimidex-an aromatase inhibitor). They suggested that I  take the supplement Glucosamine Chondroitin to help, which significantly decreased my pain. It is a suggested treatment for people with arthritis, but it was such an easy fix that a doctor should have been able to tell me…but no one did!


Our other initial #PatientInsights contributors include Super Patients Steven Keating and Janet Freeman-Daily, below. For more #PatientInsights, follow Cancer Commons on Twitter and Facebook, or search for other users’ tweets with the #PatientInsights hashtag.

Janet bubble

Steven patientinsight