Listening to patients: Experiences researching treatments online

During the development of LATESTBreastCancer, we heard feedback via face-to-face interviews, usability testing, or online surveys from nearly 100 breast cancer patients and survivors. We always asked about their experience searching for treatment information online. Everyone found the experience challenging to some degree. The main complaints were:

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.

If you need to use Google to research a complex topic then you're at a big disadvantage. In most other aspects of life where people have to make important decisions, there are Web site that allow them to perform methodical research by accessing the most up-to-date data. This includes buying a car (edmunds.com), buying or selling a house (zillow.com), buying a new computer (cnet.com) or making investments and financial plans (schwab.com). Note that all of these sites are databases.

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.