Saving Lives with Information
This evening, I had the pleasure of being invited to the first meeting of the “Digital Leadership Council” for the American Cancer Society (ACS). It’s exciting to have an opportunity to contribute my time to such a great cause. What I didn’t realize, however, was that I would also be given an opportunity to think about and work with something I have devoted my whole career to – information.
The board is charged with looking to advance the ACS’s mission of saving lives, but using as a technology as a means to do so. As people went around the table and shared stories of how cancer has affected their lives, it became clear that a significant issue for patients, caregivers, and family members was access to information. I was amazed to hear stories of how mothers and fathers, brothers and sisters, completely shut down after being diagnosed with the disease and the struggle for families to figure out everything from treatment options to dietary needs. Like many of this generation, before tonight I thought about cancer as a disease that needed to be treated with advances in medicine and ultimately a “pill you could pop.” It soon became evident, however, that this disease ultimately may not be cured with just a purple pill – but rather the power of information and how it can be used to drive a movement. By arming so many passionate people with information, everyone who is touched by this disease has the opportunity to help patients and ultimately through that exchange of support and knowledge a holistic cure can emerge.
What makes this a real possibility is that with one of the largest fund raising machines in the country, over 3 million volunteers, and nearly 7500 staff, the ACS has a wealth of information and resources that can be extremely useful for everyone touched by the disease. The challenge now is how to make sure that information they have, and the information created by so many patients, survivors, and even pharma and biotech companies, can be used to elevate the dialogue, support research, and ultimately create a movement that will use the power of a community of people and organizations working even closer to create a cure.
Fortunately, the [online] technological advancements of the past decade can help make this happen. The ACS is, perhaps unknowingly, joining a dialogue that we see even in healthcare marketing – personalization. Tonight we discussed how social networks, blogs, and many other tools can help to identify and create a more personal experience that will better engage all of us to support patients of cancer and help “get in front of the disease”. At the end of the day, it’s that personal experience that drives participation and encourages people to take the call to action. I was astonished and excited by how similar these needs are to those our company tries to solve every day: put the patient in the middle and reach them at the right time, with the right message, using the right medium.
I’m excited to continue participating in this group and coming up with new and interesting ways to help what I like to think about as “saving lives with information”. Because ultimately information is only useful if it’s consumed 
If you have any ideas on this initative, what would be useful for cancer patients, or where they are going soon after being diagnosed with the disease, I would love to hear more about this. Emails or comments about any of this here on the blog much appreciated. More updates to come.
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2 Comments
Meredith on March 16, 2009 at 10:43 pm
What a well-written post Kabir! Online support groups and social mediums for those faced with life changing diseases have been so helpful to patients and their families and have given patients power to face and fight their disease process.
Being able to communicate with those patients and share accurate and relevant medical information comes from technology which enables health care providers and professionals to reach those patients and speak directly to their disease process.
Patient communication doesn’t just happen in the exam room anymore (i.e., being passed a paper brochure to read at home.) It requires relevant and timely communication using the excellent tools that have been developed to facilitate communication.
Ken K. on March 18, 2009 at 10:25 am
Kabir, you’re right on about the “power of information” in regards to the fight against cancer. I think that terrible viruses and cancers will always seem to be one step ahead of us. There is no doubt that someday, a pill may cure them. But, something new will evolve. In the meantime, creating awareness and bringing people together can help with early detection or even prevention.
I think the web is a powerful medium that can bring people together to provide support, awareness and education. Unfortunately, my experience with http://www.cancer.org has been less than mediocre. I’m currently in the midst of raising money for “Hopes on the Slopes”, an event at Crystal Mountain to raise money for breast cancer. I was shocked by how choppy the website was. It was not user friendly. In fact, I had people who were unwilling to sign up because they didn’t like the website, period. This shouldn’t happen. Also, in the age of social web interaction, it would be great to interact with people who share your passion and cause. (Something like twitter perhaps). The web has a unique capability of reaching far beyond your local boundaries.
I understand that big organizations like the ACS would rather spend dollars on research but there is a technology component that cannot be ignored. In order for ACS to stay ahead of cancer, it should stay ahead of technological improvements as well.