It really is hard to believe that it’s been over three years since I started this blog in the late summer of 2013.
I have learned so much in the process of reading and writing about developments in cancer research from the patient perspective. And it’s been wonderful to connect with so many readers and fellow bloggers.
I’ve been reflecting a bit on starting the blog, how it’s been going and what comes next, and I’d like to share some of those thoughts in this post.
Starting the Blog and Writing About Research
Perhaps I’ll start at the very beginning, with a recap of why I started this blog, especially for newer readers.
After going through breast cancer treatment in 1993, I had a lot of questions. How much did we know about risk factors for breast cancer? What progress were we making towards better treatments with fewer side effects? It was very hard to find reliable information on these questions that put what was going on into context. Everything was presented as a “breakthrough” but all these breakthroughs sure didn’t seem to be getting us very far.
I also was turned off by fundraising campaigns that “celebrated survivors,” and I wanted to know how I could contribute time or dollars more effectively to make a difference.
I eventually got involved as a volunteer with several breast cancer organizations and took the National Breast Cancer Coalition’s Project LEAD course that trains advocates in the basics of breast cancer science. I had the opportunity to serve on a number of panels reviewing breast cancer research proposals for funding, where I represented the “consumer” perspective. These activities gave me a bit of a window into what was going on in breast cancer research.
I began to think about starting a blog to try to share, in a neutral and readable manner, important developments in cancer research–the kinds of things I wanted to know and that I’m still looking to understand better. I’m convinced that being better informed helps us to be better advocates in our health care, for ourselves and for those we care about.
Choosing Stories to Write About
So, having decided to start the blog, the next question was how to select topics and how to approach writing about them. This process have evolved for sure, but here’s what I basically do now.
I start with day-to-day tracking of news stories. I look for stories from reliable sources that seem to have particular relevance from the patient perspective. Also important is whether the study has been published, and whether it is in a major medical journal.
I believe that research at any stage can potentially be of interest. But if it’s about early stage research, I look for indications that the study is likely to lead to further developments in a reasonable time frame.
When I decide to write about a specific study that seems especially interesting, I start by getting a copy of the study itself. Sometimes studies in major medical journals are available for free online. Other times I’ve been able to get them through a subscription service I can access at a local university library. I will usually do a bit of background research to try to put the story into context. I also look for commentaries from reliable sources or quotes from experts in reports about the studies.
How Has It Been Going?
Well, it has been a fascinating three years. Doing this blog has certainly met or exceeded my expectations as a learning process. And I am deeply grateful for my readers, your comments and your support.
Here are few of the highlights that stand out for me:
- Popular Posts – The most popular posts this past year covered a variety of subject areas, including survivorship issues, understanding cancer risk, metastatic breast cancer and work on a possible preventive vaccine. These were the top three:
- 5 Cancer Research Stories Worth Following – For a while now, I’ve been doing a quarterly post pulling together five of the most interesting cancer research stories that have come out in the last two to three months. The stories included are a few of the recent ones that seem to have the greatest potential impact, at least from my perspective, and that I know I’ll want to follow as they continue to develop. These posts have been among the post popular posts on the blog.
- Charity reviews – I started a new series this summer reviewing charities that focus primarily on cancer research. I’ve done two so far, have gotten good feedback on those, and am definitely planning to continue this series.
A Look Ahead
I have an ongoing list of questions that I would like to write about at some point. Some of the topics include: research into dealing better with late effects of cancer treatment, progress in understanding and reducing environmental cancer risks, and what is being done to make clinical trials accessible to more patients.
I also hope to go back and revisit some of the most popular subject areas, especially as new material or interesting studies come out. And finally, I’ve thought about perhaps doing an e-book at some point if I can decide on a topic. But in the meantime, I would love to know if this is something that would interest readers. And I am, of course, interested in knowing in general what readers would like to see more of on the blog.
Writing this blog is a lot of work but also a lot of fun. The frustrating part is how slow progress against cancer continues to be, despite the hype about breakthroughs that aren’t really there yet and the pink hoopla every October that we can’t seem to get away from. But I do think there is ample opportunity to do better. And it’s encouraging to see some groups focusing on such essentials as defining research questions that can truly make a difference and making it easier for patients to participate in clinical trials and other forms of research.
So, thank you to all of my readers and, to my fellow bloggers, for welcoming me into the community. I am grateful for all of you and excited about continuing this journey together!
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