Here's an insightful comment from me: Social media has gripped our world, the way we live, the way we interact, what we know and influences what we do. (OK, stop laughing: I'm not a Luddite, but needed somewhere to start this conversation.)
At times, I wonder where all those folks (usually young folks) find all that interesting stuff they send to each other on a such a constant basis that it seems their smartphones are a direct extension of their fingertips. So much to say right now! I can't imagine there being that much that is so important that people walk down the street mesmerized by those things.
But maybe that is just my ignorance and my difficulty "engaging" in this new social sphere. For me, it has to be something useful to say, something useful to know, something that is going to impact my life. That's where I find all of the social media and instant access to information so helpful. Make me smarter, keep me in touch with what is important, broaden my horizon on topics of interest to me. Then you have me engaged as well.
For cancer patients-especially newly diagnosed cancer patients-and their families, loved ones and caregivers, the situation is more serious--a lot more serious. They need help, understanding, explanation, and lots of care and compassion. The devastation of a new cancer diagnosis or a worsening cancer or the ravages of treatment can leave even the most informed person desperate to understand what is happening to them, what is happening to their lives, what they can expect to happen next. And filtering through all of the material now available with a click on the web can be overwhelming, especially when one considers that some of the information may be reliable and some of it not so reliable. Think of that recent ad which extols the virtues of the internet with the tagline, "If it's on the internet, it must be true." Right.
So where do you turn for help? Where do you reach out to people who are just like you: same age, same disease, same questions, same experiences?
The American Cancer Society has a web-based social network called "WhatNext". Developed in part with the help of the Society, WhatNext is designed to bring people together to share information about their experiences with cancer. Based on a number of factors including diagnosis and disease status, the site aims to link people and help them share insights that may be of mutual interest, such as the side effects of a treatment, what to expect from treatment, and experiences with a shared cancer diagnosis. (The proactive matching is what makes WhatNext different from our other online community, Cancer Survivors Network.) The information is all public except for the person's name, so others can learn as well. Through this community of learning and sharing, there is much we can learn about what to expect, what we need to know, and how we can build on common interests when it comes to understanding the cancer journey.
There may even come a day when websites such as CSN and WhatNext can provide valuable information about cancer drugs themselves, information that would otherwise not be known.
We learn about the side effects and effectiveness of drugs through clinical trials, which are designed not only to tell us how well drugs work, but what the common side effects may be. After a medication is released into the marketplace there is still much to be learned. Occasionally side effects may become evident as more people are exposed to the new medicine that were not evident-or just plain missed-during the development and clinical trial process.
There is growing recognition that patient experiences are a valuable part of understanding the more subtle nuances and side effects of the medications we use. Do the medicines increase depression? Are there side effects which impair sexual function? What other unusual effects are people experiencing? Even the Food and Drug Administration is trying to uncover these patient experiences as part of its drug development process by trying to determine ways to incorporate patient experience and reporting into the drug approval process, and by developing surveillance mechanisms to find underappreciated problems with drugs once they have been put on the market through its Sentinel program.
But ultimately it is about serving cancer patients through social media that will be one of the next major steps forward in cancer support and communications. What are the common experiences with certain cancers and certain drugs? How do people cope with these experiences? What approaches have been effective in dealing with these problems? What can you expect from a particular cancer treatment for a particular cancer?
Never before have we had the opportunity to bond as virtual universal communities of care and concern. But sorting through all the extraneous information to get to that person or that information that is particularly relevant to your situation remains a difficult task. That's what WhatNext is designed to address. That's what WhatNext can help you accomplish as you move along the path of your cancer journey.
So, I encourage you to look further at WhatNext and see what it can do for you. Contribute your thoughts and your experiences, and help the American Cancer Societyand cancer patients come together to build a cancer community that is living and thriving, and adding to the body of useful information that will help all cancer patients gain the power of knowledge and perhaps control over one of the most difficult situations any of us will ever face.