How to find a perfect match – Empowering patients to find their way through clinical trials
Navigating through the clinical trial process can be challenging but there are tools which offer help.
Clinical trials are at the heart of all medical advances, and with them, researchers are looking for new ways to prevent, treat and detect diseases. Clinical trials evaluate the safety and efficacy of new treatments, compare whether or not those new treatments are better than an existing one, and overall, focus on measuring the impact and improvement new treatments might have on a patient and his/her quality of life1.
While clinical trials make a great contribution to medical knowledge and are vital to achieving better healthcare outcomes, researchers struggle to find volunteers and patients to take part in their trials2. Why is that? Obviously, there is no single answer to this question; it depends on many factors and it can vary depending on each individual. When considering treatment choices, many patients don’t even think about participating in clinical trials, possibly because they simply don’t know anything about them or because their physicians don’t see them as a possible option3. On the other hand, patients often have misconceptions about what these trials entail and are concerned about possible side effects. However, the main issue arises when trying to get information and finding that it is not usually presented in a user-friendly way, but rather full of complicated scientific jargon that makes the entire process even more difficult and intimidating. Furthermore, with a poll revealing that 75% of the public has little to no knowledge of clinical studies4, and 85% of trials being delayed because of the lack of participants5, it is no wonder that many trials fail before they even begin due to not reaching their recruitment goals.
We must empower patients to understand and navigate the clinical trial process in order to keep improving treatments and health outcomes.
For this reason, many have taken the initiative to create and develop tools that simplify the process for people trying to find information about clinical trials. These nonprofit clinical trial matching services use patient-friendly language to present information, making it understandable and accessible for patients, their physicians and their families. In addition to this, tools like these also provide assistance when it comes to finding the right trial for each individual based on their condition, eligibility criteria, location and several other variables. Ultimately, the aim of these matching services is to encourage people to “consider clinical trials as an option for care when making treatment decisions”.6
Let’s use Metastatic Trial Search as an example. This tool is dedicated to help women looking for metastatic breast cancer clinical trials, taking into consideration their individual diagnosis and needs. Given that there are no cures available for this type of cancer at the moment, making information accessible faster to the people who need it the most is crucial7, and advances in research are pivotal for better results in the future.
Available in the US, BreastCancerTrials.org offers a matching tool service to personalize patients’ search by sorting through hundreds of recruiting trials and selecting the best options for each person based on their health history; if the patient prefers, she can also skip the matching tool option and get access to information about all open trials filtering by tumor type or trial type8.
Another website called TrialReach.com provides standardized information in plain English, facilitating patients’ access to trial information by just answering a few questions that will help them get a trial tailored to their condition. At the moment, TrialReach.com has a database of thousands of clinical studies from several sources; for diabetes an advanced search is enabled, and for other conditions there is a basic search tool9.
Even though many patient-centered organizations facilitate and promote the consideration of clinical trials as a valid option for care (for example, the Michael J. Fox Foundation for Parkinson, Diabetes UK, the National Multiple Sclerosis Society, Cancer Research UK, HealthTalk and Arthritis Research UK just to name a few), the challenge still remains in making information accessible and as clear and simple as possible for the patients in a systematic way. Empowering patients and the general public to understand and navigate the clinical trials process is an imperative that we must ultimately strive to promote in order to keep improving treatments and outcomes for patients.
- http://www.forbes.com/sites/zinamoukheiber/2015/04/23/drug-companies-pin-hopes-on-trialreach-to-enroll-patients-in-clinical-trials-faster/ & http://www.centerwatch.com/about-centerwatch/news/