For a long time, I have thought that clinical trial information was too clinical to be of much use for patients who might be considering entering one. The information available was either in the form of searchable data bases, text with no pictures – often aimed at referring physicians, but little available to the real center of the issue – the study subject. And also repeatedly here, I have advocated for the use of more video by patients who have been through clinical trials talking to patients thinking about it.
Yesterday NIH launched “NIH Clinical Trials Research and You” which takes some steps to answer some of the many questions patients might have about clinical trial participation.
Essentially the information is categorized neatly on the landing page of the site. There is one bucket entitled “Why Should I Participate in a Clinical Trial? that leads through a myriad of text and FAQs. Then there is another one called “The Basics” that is also extremely text heavy with more questions. Taking them in clockwise order, the next category of information is called “Finding a Clinical Trial” that is mercifully short on text but has explanation and links to searching. The next is a small section called “Researcher Stories“that contains two videos – one an interview with a researcher about why she does research. Finally, in the last box is “Volunteer Stories” which a collection of several videos of patients who volunteered for studies in many different conditions and diseases.
The page shows up on the first page of search when you use the pokie online terms “NIH” and “clinical trials”, which is important, but was lower than other NIH clinical trials resources, of which there are many and some of which are difficult to distinguish. It did not show up on the first page of search, however, when just entering the terms “Clinical Trial Participation” though other NIH clinical trial information sites did. For this reason, it is important that the other NIH clinical trial information sites offer a link back to this site for patients.
The information on the new site is thorough though a few of the information buckets could stand to be less text heavy. Some video that addresses some of the text would be handy as would some podcasts that contain explanations of the written materials.
A big step in making this site useful will be its linkage to other sites that are regularly accessed by patients. While the information on this site is good, and there are new videos that can be shared through social media, this is still a static Web site. For that reason, NIH may want to consider developing an NIH Clinical Trials and You Facebook page as well.
There is a sidebar that offers promotional materials, but they are all in the form of posters, flyers and slides – nothing digital. A widget that would send people back to this site and that would carry news of updated material might have been a good idea.
Overall, the new NIH site is a good and welcome step. Over time, one hopes that it will also include more digital strategy behind it.