Wednesday, April 27, 2011
When you're diagnosed with breast cancer, treatment decisions are made quickly. Even if you have great faith in your medical team, you likely want to be involved in these decisions. You want to ask good questions and interact with your medical team at the highest possible level.
The problem is that breast cancer treatment is complex. You know you're not going to have a lot of face-to-face time with your physicians and you want to take full advantage of that time. You want to ask questions that are timely, relevant and insightful.
Question: How can you compile the best possible set of questions relevant to your treatment at each phase of your treatment, from biopsy to surgery to chemotherapy and so on?
Answer: By taking advantage of our "News and Journals" search.
LATESTBreastCancer's News and Journals search is like having your own personal research assistant go through the most recent few years of news and journal articles about a specific aspect of treatment, identify the most important ones, and then organize them in a file folder for you.
To use the News and Journals search, you simply:
1) Select an aspect of treatment ("Procedures" or "Radiation & Chemotherapy"... example).
2) Decided whether you want to search News Articles or Medical Journals (you'll perform each of these searches separately).
3) Select a timeframe. Most likely you'll select "Past 2 years."
When you click Go, our software searches our complete database for the links that you need to see and organizes them in one place (example).
Congratulations! You just saved yourself days or weeks of effort searching for yourself online. More likely, you now have a list of links that you couldn't compile on your own regardless of the amount of time you spent.
Scan the list of links. Print it out if you like. Highlight the ones you want to research further. Not every link will be relevant to you. Your medical profile doesn't tell us everything about you. But it enables us to filter out an enormous amount of information that isn't relevant to your stage of cancer, age, receptor status, etc... The links you get using News and Journals enable you to formulate extremely relevant questions about your treatment based on all of the most current information.
Put simply, breast cancer patients have never had the ability to become so well-informed so easily.
Tuesday, April 26, 2011
Yesterday I described the Treatment section of LATESTBreastCancer. In a nutshell, it's set up as lists of treatments organized into categories and subcategories. Today I'll describe the advantages of being a subscriber when you're navigating the Treatments section. Based on their medical profile, subscribers see a more organized and distilled view of the Treatments section compared to non-subscriber visitors.
Here are the subscriber advantages:
1. Treatments are personalized. Subscribers only view treatment options that are relevant to them. So, for example, a postmenopausal patient with a hormone receptor positive tumor will view a list of hormonal drugs that are appropriate for postmenopausal women. A patient whose tumor is hormone receptor negative will not see any hormonal drugs. A non-subscriber will see everything regardless of whether it is relevant to their diagnosis or not.
2. Relevant treatments are organized under tabs. Rather than seeing one long list, for subscribers drugs are organized under tabs corresponding to frequency of use. The first tab includes drugs most commonly used. The second tab includes drugs that are available because they are FDA approved, but which are less commonly used or are accessible through a clinical trial. The third tab includes drugs that are not yet FDA approved and so can only be accessed via a clinical trial. Subscribers take advantage of this "most common to least common" tabbing for other treatment options as well.
3. Links are personalized. Information filtering goes beyond treatment options. It also impacts the Web links a user sees on treatment pages. Using the previous example, there will be many news and medical journal article links on the pages for common hormonal drugs like tamoxifen or Arimidex. But a subscriber with early stage disease will only see information related to the use of these drugs for treating early stage. The objective is to focus the user on the information relevant to them.
Finally, we know that at times it's nice to see everything. So we enable subscribers to see everything with a click of a button. On any page in the Treatments section, to view everything click the All Options button. Go back to a personalized view by clicking My Options. It's that simple.
Bottom line: Subscribers get a personalized and more organized view of Treatments that points them in the right direction and eliminates the task of screening the information themselves.
Monday, April 25, 2011
This week and probably into next, I'll give an overview of the LATESTBreastCancer Web site and also provide tips for users.
There are two main sections of the site: 1) Treatments and 2) News and Journals (note: News and Journals is only available to subscribers). Today, let's look at Treatments.
Basic organization: The Treatments section is organized kind of like a typical shopping site, with departments, sub-departments and then specific treatment options (think products). For example, "Drugs" is a department. It contains five sub-departments, including "Hormonal drugs." There you'll find a list of specific options like tamoxifen, Arimidex, Femara, etc...
Arranged left to right along a typical treatment flow: Every patient's treatment is different. But often the process starts with Screening (maybe also Risk Assessment), which leads to Biopsy and Diagnosis, Surgery, Radiation therapy, Chemotherapy and then Drug therapy. There's also, very importantly, post-treatment surveillance. On the Treatment page, these topics are arranged from left to right. Two "departments" don't fit as well into this flow since they can be relevant to anyone: Complementary Therapies and Lifestyle (including exercise and nutrition).
Researching treatment options: When you're in a sub-department like Hormonal Drugs, you'll be looking at a list of treatment options. Click on any item in the list (for example, Arimidex) to view a treatment option page. This page enables you to do methodical, thorough research by accessing all of the most recent high quality Web links about that treatment option organized into tabs and listed in reverse chronological order.
Next: Using the Treatment section as a subscriber vs. a non-subscriber.
Friday, April 22, 2011
Fatigue is a common concern among women who have completed treatment. On the Exercise page our our site, you'll find links to news stories about how fatigue is real, and may be caused by a nervous system imbalance. You'll also see stories about using exercise to get your body back after treatment.
This month, there's also news about nutrition and diet after treatment. A Sydney Morning Herald story about the benefits of fish oil can be found on our Omega 3 Fatty Acid page. Soy was also in the news this month. The Los Angeles Times and Consumer Reports both ran stories about consuming Soy after treatment.
Also, on our Screening Mammography page, you'll find a recent Clinical Advisor story about the accuracy of screening mammography after treatment.
At LATESTBreastCancer, we will continue to follow news for everyone, including those who have completed treatment. We welcome feedback and suggestions about the topics that interest you most.
1. QUALITY: How can I trust the information, or the source of a link?
2. TIMELINESS: How do I know a link is showing me the most up-to-date information? Even if a Web page is only a few months old, is that the most recent information?
3. RELEVANCE: How do know if the information pertains to me? As many people said, "There are different types of breast cancer and you need to find information that's relevant to you."
4. UNKNOWNS: Search engines work well if you're searching for a known. But if your question is "What's out there that I should know about?" then search engines comes up very short.
LATESTBreastCancer's "database model" solves all four of these problems. By "database model" what I mean is that we maintain our own database of links and treatment information that's automatically identified on the Web, but manually reviewed and organized so it can be much more precisely searched by patients.
1. QUALITY: We only put information and links in our database that comes from established, high quality Web sites.
2. TIMELINESS: When you see a list of links on our site, you know it's every link we've come across--all of the info available--in reverse chronological order.
3. RELEVANCE: When you subscribe, we use your medical profile to filter out information that isn't relevant to you and greatly streamline your research.
4. UNKNOWNS: Our Web site shows the full universe of breast cancer treatment options. Everything of even potential relevance to a patient is listed on our site.
But today when people have to research the latest treatment information so that they can have a well-informed discussion with their doctor, they either need to use content sites like WebMD with articles that can be out of date or incomplete, or they need to use Google, which gives them much too much disorganized information of variable quality and relevance.
So the dissatisfaction of our breast cancer patient and survivor interviewees about their experience searching for treatment information are spot on. We think the time is now for a sane, methodical way to research the most important topic a woman might ever have to learn about.
Wednesday, April 20, 2011
Some drugs are in very early development. Published research data and overviews are not yet available, but news coverage provides valuable information. For example, on the Bezielle (BZL101) page of our site, you'll read news reports about positive Phase 1 trial results and the issuance of a patent. A link to a Spring 2011 Cure Today article covers the origin of the drug, (a herb used in Chinese medicine,) early trial results and future planned trials. Without this news, Bezielle wouldn't have a voice.
Some products are embroiled in international controversy. On the Avastin (bevacizumab) page, the Medical Journal Abstracts section covers published research data about the drug. The Descriptions tab provides links to overviews about how the drug works with notes for patient use. The real story, however, is found under the News tab. That's where you'll read about the United States (FDA) and United Kingdom revoking approval for metastatic patients. You'll read about the patient backlash and the pending appeal of the FDA decision. You'll learn that the National Comprehensive Cancer Network (NCCN) recently reaffirmed its recommendation for Avastin, despite the FDA decision, and that some insurance companies continue to pay for Avastin. Just this week, the European Union expanded its approval for Avastin. Future news will undoubtedly cover the results of the pending appeal.
Drugs aren't the only products to make news. This week, the FDA expanded a recall of a device used during Axxent eBx Brachytherapy System radiation treatments. Also, there was a story in the UK Daily Mail about a patient's experience with INTRABEAM intraoperative radiotherapy.
At LATESTBreastCancer, we update the news every day. Where can you find news on our site? First, almost every test, surgery and treatment has a News tab on its product page. There, you will find all news items relating to that product. Subscribers will have additional access under the News and Journals tab, where the most important news relevant to your diagnosis is highlighted. You can see news from the last two years, six months or month. It's a great way to check-in with the site to see what's most important in one easy place. Remember, there's news for just about every product on our site, including tests, complementary therapies and lifestyle options. Be sure to scroll around and explore News and Journals. Finally, news will be highlighted on this blog page, so be sure to check back often.
We're looking forward to keeping you posted. Please stay tuned.
Monday, April 18, 2011
The second order of business for this first post is to introduce the site itself.
LATESTBreastCancer really is the first Web site that gives patients personalized information about their treatment. It helps them generate insightful and timely questions for their medical team about new information that could impact their care. Its purpose is to create extremely information-empowered patients.
Here's how the site works: Patients (users) create a medical profile based on their diagnosis. This profile enables the site to identify relevant treatment options and highlight important new information for topics all along the treatment continuum: from imaging technologies to diagnostic tests, procedures including radiation therapy and surgeries, drugs, chemotherapies and complementary therapies.
To deliver this level of personalized information, our staff reviews and indexes existing Web content daily. We reorganize it in the LATESTBreastCancer database so that it can be searched in a much more precise way than information can be searched on the Web. A clearer description of "how the site works" can be found here.
So, in essence, we track the field of breast cancer care comprehensively so that each newly diagnosed breast cancer patient doesn't have to spend hours, days or weeks screening, parsing and synthesizing Web content on their own. They still have to do research. But they'll be doing it much more efficiently and methodically. And they'll have the peace of mind at the end of the process of knowing that they haven't missed key information.
You can find more information in our press release of 4/15/2011 and on our About Us page.
Regarding this blog, over the next week or two I'll be talking more about the LATESTBreastCancer site with an emphasis on how to get the most out of it. Then I want to transition this blog to be more about breast cancer treatment itself. Of course, we'll keep the agenda flexible. But that's the plan.
Please feel free to contact us with your comments, questions, suggestions, or ideas either on this blog or through the site. You can always use firstname.lastname@example.org. We're excited to be embarking on this journey and look forward to hearing from you. Until tomorrow...