At Lilly COI we are lowering the barriers that exist between clinical information and the people who need that information the most. We’ve shared how our Clinical Collections tool is a much easier way to search for and pull together relevant clinical trial registry information.
But we’ve been thinking: We want to make public clinical research easier to get at, right? Search is one way...but instead of search, what if we made it so that data finds the patient?
A Lot of Data
From the moment a patient learns that they have a serious illness or that their care-giver wants to try a new treatment, they are inundated with information, relevant and otherwise. Regardless of the size of the task, however, most patients are still highly motivated to learn as much as they can as quickly as they can. Accumulating relevant clinical information that could impact their health is crucial.
Clinicaltrials.gov is a registry with a lot of great information, and there are plenty more sources of clinical research information. As we look to more clinical trial sites, medical journal collections, drug labels and other digital sources, we open the doors to more knowledge - but we open the flood-gates of data on patients as well. So how can a patient get at the information they need without rowing through the sea of data?
A better way may be for a patient to "follow" the information they need. In the follow model, a patient can choose from available data sources, define their own criteria, and only the latest, most relevant data comes straight to them. As new data becomes available, the patient is notified of the latest news.
Patients can follow data related to their disease, treatment, or clinical trials that match their interest, based on their choices. For example a patient might choose to follow trials that are actively recruiting patients, at sites in a particular location or are focused on a particular type of intervention.
Imagine then that the patient wants to share what they follow. They have the option to share what they follow publically. Others can follow what they are following, and vice-versa. And so on, and so on. Connections with others around clinical research data are made, and a community of patients forms around the information that matters.
In this way a powerful generative knowledge system is created, and communities of interest can emerge. An individual can learn a lot from the data they follow, but sharing and following with others - patients and researchers - will be even more valuable.
We're preparing to provide the ability to follow clinical research for free and in the open. It seems like a good idea. But, in order for it to make a difference, we need to guided by the the patient voice, using terms and criteria that are from the patient.
To that end, we ask for your help. What data sources would you like to follow? What are key criteria that make sense to select? How would you like to be notified when data is available? As always, we welcome your comments.