Medium blog post
Warren Kibbe, Ph.D., director of NCI's Center for Biomedical Informatics and Information Technology, and Presidential Innovation Fellow Alexandra Pelletier recently posted a story on Medium about redesigning how patients and oncologists find and understand information about cancer clinical trials. Share your ideas at cancerclinicaltrialsideas.
Making clinical trials information more accessible
By Warren Kibbe, Ph.D., Director of the NCI Center for Biomedical Informatics and Information Technology and Alexandra Pelletier, Presidential Innovation Fellow
…patients should be able to seamlessly find a clinical trial that might suit a specific condition. Doctors should have an easy way of guiding patients through the process. But as you all know, less than 4 percent of patients enroll in trials that might be the key to the discovery of the next life-saving treatment.
Joe Biden, Moonshot Summit
Last week at the Cancer Moonshot Summit, Vice President Biden pointed to low patient participation in clinical trials as a major impediment in our quest to accelerate progress against cancer. The reasons for this problem are numerous, from economic disincentives for patients and clinicians to cultural and attitudinal biases. While no one thing will solve the complicated problem of getting more patients to participate in clinical trials, all solutions rely on relevant, updated, and structured information about the trials accessible to all, especially the patients they seek to help.
For that reason, the National Cancer Institute (NCI), in partnership with the White House Presidential Innovation Fellows (PIFs), announced its plan for re-designing how patients and oncologists find and understand information about available cancer clinical trials.
The goal is to ensure that patients and their care teams can access the information they need at the right time, to strengthen participation in cancer research. While clinical trials may not be the best treatment option for every cancer patient, many patients, providers, and caregivers could benefit from knowing and understanding what is available and having appropriate clinical trials offered and explained as an option in their cancer care at any clinical care site.
In 2008, NCI initiated their database of curated information for all active cancer clinical trials offered at NCI-designated sites, supported by NCI in the United States. From 2009 until today, all new and existing NCI-supported interventional trials, including those taking place at NCI-designated Cancer Centers, are reported to NCI.
At the Vice President’s Cancer Moonshot Summit on June 29th, we unveiled a streamlined clinical trials search page, trials.cancer.gov, that allows you to search for NCI-supported clinical trials yourself, or to access help in searching from NCI’s Cancer Information Service. But these are just first steps.
We need to go further. This is where you #CanServe the Cancer Moonshot.
Clinical trials are hard for most patients and their loved ones to understand. Typically, research trial descriptions are not written with the patient directly in mind. They are complicated and difficult to search as the language is scientific and targeted to the medical community. While there is no single, quick fix, we are committed to improving this issue over time.
Decades ago, the U.S. Government made both weather data and the Global Positioning System freely available. Since then, American entrepreneurs and innovators have used these resources to create navigation systems, weather newscasts and warning systems, location-based applications, and more. In line with this thinking, the Obama administration seeks to make other information resources open and easy to find and use.
Along these lines, we plan to make cancer clinical trials data hosted ontrials.cancer.gov available through an application programming interface (API) for the community — advocacy groups, academia, and others in the cancer clinical trials ecosystem. The API will enable these groups to build applications, integrations, search tools, and digital platforms tailored to individual communities that bring clinical trial information to more providers, patients, and their family members. A prototype for the API (still in development) is available here: https://clinicaltrialsapi.cancer.gov.
We challenge you to give us ideas on how to improve.
Several technology companies, including Smart Patients, Syapse, Cure Forward, and TrialReach, have looked at our API prototype and are working on innovative solutions for patients to help them find and match trials using NCI clinical trial data. They are collaborating with us and sharing ideas about how they could use this API and what we could do to make it even easier to use.
We want more of you to join this conversation.
Today, we are launching a website,https://cancerclinicaltrialsideas.cancer.gov, to gather your ideas on how we #CanServe you better by making cancer clinical trials information more accessible. Check out the trials.cancer.gov search page and the prototype API, and give us your ideas and feedback by August 30, 2016.
Cancer is complex, and clinical trials are scientific endeavors that are often difficult to describe to patients, the very people with the most at stake in finding the right research trial, at the right time.
Given that the goal of cancer clinical trials is to make faster progress to improve the health and quality of life for patients, we need more patients to participate in the cancer research that is appropriate for them.
How can we make information about clinical trials more accessible and understandable?
Contribute your ideas. https://cancerclinicaltrialsideas.cancer.gov