{
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    "title" : "Meeting Patients Where They Are: Liberating Clinical Trials Data Under the Cancer Moonshot |Digital.gov",
    "description": "Meeting Patients Where They Are: Liberating Clinical Trials Data Under the Cancer Moonshot",
    "home_page_url" : "/preview/gsa/digitalgov.gov/bc-archive-content-3/","feed_url" : "/preview/gsa/digitalgov.gov/bc-archive-content-3/2016/11/16/meeting-patients-where-they-are-liberating-clinical-trials-data-under-the-cancer-moonshot/index.json","item" : [
    {"title" :"Meeting Patients Where They Are: Liberating Clinical Trials Data Under the Cancer Moonshot","summary" : "Cancer clinical trials are a critically important step on the pathway for new or improved treatments to make their way to patients in clinics and hospitals in towns and cities across the country. Patients and their loved ones are relying on these rigorous studies to determine whether promising new therapies and approaches might extend how","date" : "2016-11-16T13:00:23-04:00","date_modified" : "2025-01-27T19:42:55-05:00","authors" : {"sheila-prindiville" : "Sheila Prindiville","michael-balint" : "Michael Balint"},"topics" : {
        
            "application-programming-interface" : "Application programming interface",
            "content-strategy" : "Content strategy",
            "innovation" : "Innovation",
            "open-data" : "Open data",
            "software-engineering" : "Software engineering",
            "user-experience" : "User experience"
            },"branch" : "bc-archive-content-3",
      "filename" :"2016-11-16-meeting-patients-where-they-are-liberating-clinical-trials-data-under-the-cancer-moonshot.md",
      
      "filepath" :"news/2016/11/2016-11-16-meeting-patients-where-they-are-liberating-clinical-trials-data-under-the-cancer-moonshot.md",
      "filepathURL" :"https://github.com/GSA/digitalgov.gov/blob/bc-archive-content-3/content/news/2016/11/2016-11-16-meeting-patients-where-they-are-liberating-clinical-trials-data-under-the-cancer-moonshot.md",
      "editpathURL" :"https://github.com/GSA/digitalgov.gov/edit/bc-archive-content-3/content/news/2016/11/2016-11-16-meeting-patients-where-they-are-liberating-clinical-trials-data-under-the-cancer-moonshot.md","slug" : "meeting-patients-where-they-are-liberating-clinical-trials-data-under-the-cancer-moonshot","url" : "/preview/gsa/digitalgov.gov/bc-archive-content-3/2016/11/16/meeting-patients-where-they-are-liberating-clinical-trials-data-under-the-cancer-moonshot/","content" :"\u003cp\u003eCancer clinical trials are a critically important step on the pathway for new or improved treatments to make their way to patients in clinics and hospitals in towns and cities across the country.\u003c/p\u003e\n\u003cp\u003ePatients and their loved ones are relying on these rigorous studies to determine whether promising new therapies and approaches might extend how long they live or improve their quality of life.\u003c/p\u003e\n\u003cp\u003eFor many years, a steady number of patients with cancer, approximately 5%, have participated in cancer clinical trials. Clearly, if we’re going to make the kind of progress against cancer that is envisioned by bold initiatives like the \u003ca href=\"https://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative\"\u003eCancer Moonshot\u003c/a\u003e, being led and championed by Vice President Biden, then we have to continue developing innovative ways to improve participation in clinical trials. \u003cdiv class=\"image\"\u003e\n  \u003cimg\n    src=\"https://s3.amazonaws.com/digitalgov/_legacy-img/2016/11/600-x-450-ct-api-article.jpg\"\n    alt=\"NCI Clinical Trials API graphic.\"/\u003e\u003c/div\u003e\n\n\u003c/p\u003e\n\u003ch2 id=\"filling-an-important-void\"\u003eFilling an Important Void\u003c/h2\u003e\n\u003cp\u003eThere are a lot of reasons why more people don’t enroll in clinical trials. In some cases, they are too sick. Or sometimes they don’t trust the idea or intent of a clinical trial.\u003c/p\u003e\n\u003cp\u003eBut another important reason that too few people with cancer enroll in clinical trials is that they don’t know about them or can’t find one for which they are eligible.\u003c/p\u003e\n\u003cp\u003eDespite the best efforts of federal health officials, researchers, and others involved in organizing, running, and promoting cancer clinical trials, it can still be difficult for patients—along with their family members and oncologists—to find clinical trials for which they might be eligible.\u003c/p\u003e\n\u003cp\u003eOur effort to help remedy this situation began earlier this year, after President Obama announced the Cancer Moonshot during his State of the Union address. NCI, in partnership with the White House \u003ca href=\"https://www.whitehouse.gov/innovationfellows\"\u003ePresidential Innovation Fellows\u003c/a\u003e (PIF) program, launched \u003ca href=\"https://www.cancer.gov/about-cancer/treatment/clinical-trials/search\"\u003etrials.cancer.gov\u003c/a\u003e, a streamlined, user-friendly website for searching for NCI-supported cancer clinical trials.\u003c/p\u003e\n\u003cp\u003eThe next big step is to make the information on \u003ca href=\"https://www.cancer.gov/about-cancer/treatment/clinical-trials/search\"\u003etrials.cancer.gov\u003c/a\u003e available through \u003ca href=\"https://www.cancer.gov/syndication/api\"\u003ea new application programming interface\u003c/a\u003e (API).\u003c/p\u003e\n\u003cp\u003eSo what’s an API? It’s a conduit, or middleman, that allows programmers to access certain data from a database or other source—in this case, from NCI’s \u003ca href=\"https://www.cancer.gov/about-nci/organization/ccct/ctrp\"\u003eClinical Trials Reporting Program\u003c/a\u003e, which collects and houses data on all NCI-sponsored clinical trials—to integrate into their own applications.\u003c/p\u003e\n\u003cp\u003eYour favorite traffic and weather apps on your phone, for example, rely on APIs to access the data they need to let you know where the next accident is or whether you need to bring an umbrella to your child’s soccer game.\u003c/p\u003e\n\u003cp\u003eThis new API from NCI will allow third parties such as advocacy and patient organizations, cancer centers, and researchers to build web applications, search tools, and other resources to help patients find the right trial for them.\u003c/p\u003e\n\u003cp\u003eIn other words, with this API, we are making it possible to deliver clinical trial information to the patient where he or she is—on the web, in their community, at their physician’s office.\u003c/p\u003e\n\u003ch2 id=\"collaboration-forging-innovation-and-opportunity\"\u003eCollaboration Forging Innovation and Opportunity\u003c/h2\u003e\n\u003cp\u003eThis API is also important because it’s the product of the unique collaboration between NCI and the PIF program.\u003c/p\u003e\n\u003cp\u003eThis is just one example of the kind of collaboration envisioned by the Cancer Moonshot, bringing together two components of the federal government to tackle solutions to critical problems.\u003c/p\u003e\n\u003cp\u003eA prototype of the API, the alpha release, was released in June. It was tested with different targeted user groups and improvements were made based on the feedback we received.\u003c/p\u003e\n\u003cp\u003eToday, \u003ca href=\"https://www.whitehouse.gov/the-press-office/2016/09/16/fact-sheet-vice-president-biden-announces-new-steps-improve-clinical\"\u003eVice President Biden is announcing\u003c/a\u003e the release of the next version of the API, the beta release. Over the coming months, the NCI and PIF team will do further user testing on this release, resolve bugs and other issues, and make additional improvements based on user feedback.\u003c/p\u003e\n\u003cp\u003eWith the beta release, we took a substantial step: \u003ca href=\"https://www.cancer.gov/about-cancer/treatment/clinical-trials/search\"\u003etrials.cancer.gov\u003c/a\u003e is now “consuming” the API. In other words, NCI is now using the API to power searches for NCI-sponsored clinical trials on its website. Additionally, several other groups are already using, or are well along the road to using, the API for their own patient communities.\u003c/p\u003e\n\u003cdiv class=\"image\"\u003e\n  \u003cimg\n    src=\"https://s3.amazonaws.com/digitalgov/_legacy-img/2016/11/600-x-333-screen-capture-of-homepage-for-trials.cancer.gov_.jpg\"\n    alt=\"Screen capture of the homepage for trials.cancer.gov.\"/\u003e\u003c/div\u003e\n\n\n\u003cp\u003eFor example, \u003ca href=\"https://www.smartpatients.com/\"\u003eSmart Patients\u003c/a\u003e, an online community that helps patients and families affected by cancer, is using the API as part of its \u003ca href=\"https://www.smartpatients.com/trials\"\u003etrial search tool\u003c/a\u003e. And \u003ca href=\"http://trialreach.com/\"\u003eTrialReach\u003c/a\u003e will soon launch a search tool to help patients with lung cancer find the right clinical trial. The TrialReach tool will allow patients and physicians to tailor a search using each patient’s pertinent clinical and molecular data, including the presence of certain genetic alterations in the patient’s tumors.\u003c/p\u003e\n\u003cp\u003eTwo other patient-focused organizations, Syapse and Cure Forward, will also be using the API in their trials search tools soon.\u003c/p\u003e\n\u003ch2 id=\"constantly-evolving-improving\"\u003eConstantly Evolving, Improving\u003c/h2\u003e\n\u003cp\u003eThe creation of this API is not a static event. Just as we have tested and refined it through the initial releases, we will continue to make changes and improvements to it over time. Users are encouraged to provide feedback and suggest improvements for future releases.\u003c/p\u003e\n\u003cp\u003eBased on the strong response we’ve received thus far, we’re optimistic that the availability of this new tool will, over time, help connect more patients with cancer with a clinical trial and help bring effective new therapies to patients in need more quickly and efficiently.\u003c/p\u003e\n\u003ch3 id=\"related-resources\"\u003eRelated Resources\u003c/h3\u003e\n\u003cul\u003e\n\u003cli\u003e\u003ca href=\"https://www.cancer.gov/about-cancer/treatment/clinical-trials\"\u003eClinical Trials Information for Patients and Caregivers\u003c/a\u003e{.title}\u003c/li\u003e\n\u003cli\u003e\u003ca href=\"http://time.com/4494104/joe-biden-cancer-moonshot/\"\u003eTIME—Joe Biden: The Next Step in Our Cancer Moonshot\u003c/a\u003e{.title}\u003cem\u003eThis post was originally published on the NCI’s \u003ca href=\"https://www.cancer.gov/news-events/cancer-currents-blog\"\u003eCancer Currents Blog\u003c/a\u003e.\u003c/em\u003e\u003c/li\u003e\n\u003c/ul\u003e\n"}
  ]
}