Building a Social and Community-driven Knowledgebase of Clinical Trials
We recently made a big enhancement at TrialX and we couldn’t be more excited. We have been working feverishly to make improvements to our site making it easier for patients to find trials matching their personal health profile and enabling them to contact the investigators in a seamless and secure manner.
Now, we are extending TrialX to incorporate a whole collaboration and social aspect to learning more about clinical trials in general or about a specific clinical trial. As we have been brainstorming about what collaborative and social features of Web 2.0 would be apt for the clinical trials space, we have found clues by looking at our site utilization data and the feedback provided by users. We have been routinely getting emails from patients asking questions about a clinical trial, about trials for a particular condition or trials for a new treatment they may have heard about. For instance one user emailed (which sounded as if she really needed help to find a trial) about infertility trials. Some have asked us for results of a trial or even if we were still recruiting. Our logs also show many searches for keywords like “ms clinical trial effects” or the name of a treatment and its potential for a trial. The data and the users were clearly indicating that they have “unmet information needs” about clinical trials, new treatments and their effects.
We think that these information needs are different than knowing more about a particular condition (say, multiple sclerosis) for which sites like WebMD or Medline Plus are great. They are also different from finding about a particular prescription medication and its side effects. And they are also very different from some asking about trials in a patient support forum for a condition like Multiple Sclerosis or breast cancer. The deficiency (and thus the opportunity) being is that such sites are not a knowledgebase built around clinical trials and new treatments. It seems andour data suggest that there is a need for building a knowledgebase where patients can ask questions about a specific trial, about trials related to specific conditions or new treatments, discuss their apprehensions or doubts and other related issues. And if such a network can leverage the potential of the web to enhance collaboration and social connections, then the knowledgebase can increase tremendously in value and content.
Our TrialX team feels that this is an important “information gap” that needs to be addressed and a good area for introducing web 2.0 like features. Doctors dont have time to answer questions about trials (many dont even know what trials exist for what conditions). Investigators too find it hard to answer all details and for all patients. Other websites have no or limited information. And very importantly, we realized that its too much to expect patients to directly consider enrolling in a trial without first reading up a bit about it or “Ask Questions”. So we have added a whole new tab on TrialX, “Community” . People can ask questions by going to this page or by clicking the “Ask a Question” button on each trial page. These questions can be answered by any registered TrialX user, be it a patient, an investigator or a clinical research coordinator.
Our community-driven efforts to build a collaborative knowledgebase around trials represents one way in which are trying to make Clinical Trials 2.0 a reality. We started by building a consumer-centric website. We have leveraged paradigm changing trends by integrating with Google Health and Microsoft HealthVault. And now by switching on our community feature, we are furthering our commitment to make the process of finding clinical trials, learning about them and enrolling in them as easy and informative as possible.
Building the tools that empower our users to add to the knowledgebase and thus help others (and themselves) with similar questions to get their information need met, is our objective. Because this creates a win-win situation for everyone; more education, information for patients and less burden for investigators who would otherwise have to reply to every one about the same question. And in the process we are creating information that will help raise more awareness and dispel some myths about clinical trials among those who are not or are only partially aware about the benefits and potential of clinical trials
We will be launching more useful community features soon (again by listening to our users and looking at our data). Innovation grounded in user needs continues at TrialX!