Friday, April 24, 2015

Live from #PCTUS: 2 New Patient-Centered Initiatives Announced

By Kristina Lopienski, Product Marketing Manager, Forte Research Systems, Inc.

In some of the sessions that I happened to attend, I was among the first to hear the announcements of two new and separate initiatives to better understand potential clinical trial participants. Both of them strive to address what’s unique by disease, rather than grouping everyone together in one giant all-encompassing patients bucket. They also intend for this information to be used in designing more patient-centric trials.

In the Patient Engagement in Clinical Research track, during the case insight session, “Late-Breaking Results from the Front-Lines of Trial Design: How are Patients Really Engaging in Research?”, Jeremy Gilbert of PatientsLikeMe gave an update to some of his company’s endeavors.

Surveys have been great for generalizing how patients feel about certain things, but Jeremy provided the audience with examples that show just how great patient preferences vary when you break down the answers by disease. Realizing that we need to better understand each group’s unique set of needs and preferences, Jeremy announced that he has teamed up with Ken Getz to create an on-demand patient-centricity resource center, which will be available in the near future. Jeremy said they plan to publish as much of this data and make it more accessible. Getting this information into the hands of people who are designing trials will enable them to learn how specific patient populations think about their disease.

Next, in the Clinical Operations Optimization track, a session by the name of “The Patients 2 Trials Consortium: Breaking News” featured four speakers. Three of them, Lani Hashimot of Novartis, David Leventhal of Pfizer, and Katherine Vandebelt of Eli Lilly, gave back story to the Patients 2 Trials Consortium that brought these three big pharma companies together who share a common struggle – matching patients to trials. Realizing that it does no good for a patient to get matched to their company’s trial if the trial doesn’t help the patient, they knew that by partnering sponsor to sponsor, they could bring valuable clinical trial information to patients.

The consortium agreed on target profiles that define and normalize groups of patients who might enroll for a specific trial. Pablo Graiver of TrialReach, engaged with the consortium to create an infrastructure based on their standard set of data. The result is TrialReach (which is live as of 24 hours ago).

Pablo gave a live demo of TrialReach. One by one, the user answers questions, first by condition, then location, age, etc., and as they answer each question, the list of available trials within X miles of you is narrowed down. By asking simple questions, the algorithm reads eligibility criteria and continuously reads, ranks and refines trials to display results in plain language. The results of trials are split by patient-friendly information (more than what’s available on with the logistics of the trial (specific procedures, number of visits, etc.).

Patient profiles are saved searches, and they have a plan for making this resource accessible to patients – by embedding it on disease-specific websites (where those potential patients already are online). In these instances, people can use the tool outside of, without having to leave the site they’re on. All searches, even from the embedded locations, generate the same snippets of data. Sponsors can the use these queries to show maps of matches and the information from the specific population to design better trials.

About the Author: Kristina Lopienski is the Product Marketing Manager for Overture EDC at Forte Research Systems​. In her role, she works to bring educational resources to clinical research professionals. She writes on a variety of topics affecting clinical trials on the Forte Clinical Research Blog. Kristina is currently the guest blogger covering Partnerships in Clinical Trials 2015. 

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