ClinWiki

We are failing patients. Too often, patients do not understand clinical trials and the enrollment process and many trials close each year due to lack of enrollment. Clinical trials are needed to show new treatments are effective, and the process allows treatments to become more widely available to patients. But the research system is broken, and repair requires radical change.

Better communication with patients about clinical trials is critical, especially for those who may not have the resources and background to find information on their own. Current trial participants are overwhelmingly white and historically underserved communities are missing out on high-quality care—now and in the future—as absence from trials means gaps in knowledge of whether new medicines will be effective for specific communities.

The Elevate Prize would be transformational for me as a leader and for the organization, not only for the financial support, but for the doors it would open. The potential for collaboration with a diverse, motivated group of thinkers and activists is incredibly exciting. The connection and  inspiration would help me determine the best way to advocate for access to life-saving treatments and effectively communicate complex science and research with people who need it most.

My passion for connecting patients with clinical trials is a logical extension of my education and early professional development. I received my undergraduate degree from UC Berkeley in molecular and cell biology and a master’s degree in public health from UCLA (health education focus). The latter provided in-depth training in conducting needs assessments and creating implementation plans to address identified issues.

Working with advocacy organizations helped me understand hurdles patients face when seeking treatment options, and my awareness was crystallized when I helped a friend find and enroll in a trial. The process was eye-opening and catalyzed my passion for providing trial information for all patients and was my inspiration to join ClinWiki as the first Executive Director.

When I arrived at ClinWiki, only the beginnings of code were in place and I directed the creation of the user interface and multiple disease/condition-specific subsites. We now offer a free, open-source, web-based application that delivers an improved trials search platform, providing annotation and curation to add data, with better search tools and detailed information patients and caregivers need to understand and choose the best clinical trials. My goal is for ClinWiki to become THE comprehensive source of clinical trial information.

Every day, thousands in the US are diagnosed with serious diseases, such as ALS and brain cancer, that, despite having “standard of care” treatment options, continue to have poor outcomes. In addition to incalculable human costs, economic impact of these diseases is staggering; US yearly productivity loss from disease morbidity/mortality is calculated in the hundreds of billions of dollars. And these costs are preventable.

Trials are how new treatments are proven to work and, ultimately, become more widely available to patients, but despite being the most promising choice, participation is low (<5%). Reasons include flaws in the main public repository of clinical trial information (clinicaltrials.gov); inaccessible study designs/justifications; lack of guidance to determine if a clinical trial is right for a patient; unstructured/unsearchable trial data.

Personalized medicine holds great potential and relies on the research process to make it widely available. Our free, online tool helps care teams find and choose the best trial, which leads to improved results, better/faster trials, and an overall increase in medical innovation. Without successful trials, serious diseases will continue to be inordinately fatal, and that is why time is of the essence. People cannot afford to wait to find and participate in clinical trials.

ClinWiki is a 100% patient-focused organization, not beholden to government or commercial entities. Shaped by and for patients, genuinely agnostic, and complementary to existing resources, our truly open and transparent platform encourages users to give back to their communities in the form of knowledge and makes it easy to do so. At its core, ClinWiki is an accessibility service that removes barriers to care and contributes to the reduction of health disparities by providing medically vulnerable and disabled patients with access to clear, understandable clinical trial information, that is, for many, a matter of life and death.

Our online application is a unique search tool that enables disease communities to curate relevant trials and help patients, caregivers, and care teams make informed treatment decisions. Our tool is complementary to—and improves upon—existing resources, and is a free, open source, public benefit for good.

ClinWiki is updated continually with trial information from clinicaltrials.gov and provides a platform so that experts—patients, family members, physicians, researchers, and disease organizations—can populate additional critical information about each trial. In aggregate and with our improved search interface, ClinWiki becomes THE comprehensive resource to navigate clinical trial options for a particular condition or disease.

For the foreseeable future, for most lethal cancers and progressive and fatal disabling conditions, the best treatments will come through clinical trials. Our database encompasses all actively recruiting US clinical trials (approximately 61,000 at any point in time). 

The more we are able to inform and empower patients and their care team to enroll in the right trial for them, the more likely trials are to succeed. Having better trial information helps patients understand their eligibility and spend less time pursuing trials that are not a good fit. Making trial navigation easier leads to reduced time to making treatment decisions and enrollment, helping clinical trials reach enrollment faster. 

Helping patients find and enroll in the best trials for them leads to both better patient outcomes and more successful trials, and contributes to the advancement of medical innovation. 

Areas of impact for patients and caregivers via ClinWiki:

• increased number and quality of treatment options;
• better clinical research literacy;
• improved qualification and matching of patients and trials; 
• psychosocial benefits as patients feel more in control;
• improved treatment decision-making;
• empowerment of patients to communicate with care teams; and, ultimately,
• better patient treatment outcomes.