Thanks to Healthline for this guest post! Click here for the original article.
On May 20, 2016, we partnered with TrialReach, JDRF, and CISCRP to host a Twitter Chat about clinical trials. Thanks to your participation, the conversation provided great insight into the challenges and barriers facing clinical trial participation, as well as the opportunities we have to improve access.
Read on for some of the highlights of our #TrialChat. (Some tweets have been combined or modified for clarity.)
Q1. Why are clinical trials important?
@CISCRP: To find treatments and cures for conditions and diseases that affect the world! Without clinical trials medicines wouldn’t exist. Clinical trials help new drugs and treatments come to market. More importantly, trial participants make that possible.
@ResearchAmerica: Clinical trials are important to test the safety and effectiveness of certain treatments, drugs or devices.
@FingoHead: Clinical trials my life back. Participation moves science forward and improves quality of life for all. Just look in medicine cabinet and see why clinical trials matter. From devastating disease to a stress headache it takes research.
@TrialReach: Every single medicine we take today went through a rigorous drug approval process that involves clinical trials. There can be no medical progress without these trials – including the researchers who run them and the patients who take part.
@INC_Research: Clinical trials are vital to the development of new drugs and treatments. Without clinical trials, patients would be cut off from the therapies and care they need.
@JDRF: Clinical Trials are the way we advance effective treatment options that can offer the greatest good. Every case of type 1 diabetes is different. Clinical trials help us understand how treatment options fit individuals.
@FDAOMH: Clinical Trials help doctors and scientists better understand, treat and prevent diseases. Minorities should participate so doctors and scientists can test the medicine in the patients most likely to use it. This is important! Age, sex and race may change how you respond to medicine, but most people studied are white and male.
@Campaign4Cures: Clinical trials are important because they expand our knowledge of science and medicine and involve patients in research.
@Alzheimers_NIH: Participate in research to learn how Alzheimer’s works and to study ways to prevent and treat it. Watch this video to learn about why participating in Alzheimer’s research is so important!
@iCANResearch: Close to 50% of medications used in children have not been studied in children. For NICU that’s 90%.
@CureClickTeam: Clinical trials are vital to medical advancement. No clinical trials = no medicine.
Q2: Where can people find out about clinical trials?
@CISCRP: Talk to your doctor for suggestions, look for trials online usingclinicaltrials.gov or CISCRP’s free searchclinicaltrials.org
@Alzheimers_NIH: For the latest in Alzheimer’s and dementia trials, use this searchable database.
@CISCRP: See our resource page with different ways to find clinical trials.
@asipocz: I second! @CISRP’s resources are easy to use and understand for learning more about clinical trials.
@Campaign4Cures: The NIH has an entire database for info on finding clinical trials and research.
@forte: These services are working to make clinical trial information more accessible for patients.
@TrialReach: Our friends over @CISCRP have some excellent resources for patients to learn about trials. Doctors also play a key role in educating patients about opportunities to take part in research!
@Alzheimers_NIH: Yes! Suggest trial participation at the time of Alzheimer’s or dementia diagnosis! For the latest info on Alzheimer’s or dementia trials, sign up for our monthly e-alert.
@TrialReach: @Alzheimers_NIH Absolutely. Trials as a treatment option and not a last resort is such an important message.
@FingoHead: Also search Facebook. Patient groups proliferate, all sharing info about newest research in disease.
Q3: How can patients get involved with trials if they’re interested?
@TrialReach: After doing research on trials, the hardest part can be finding one that’s right for you. We’re trying to change this with TrialReach Match, through which you can match to trials just by answering a few questions! Check out our initial Match product for diabetes. More therapeutic areas coming soon!
@GoPraxis: Always start with talking to your doctor first to see if you are a fit.
@CISCRP: Get in touch with study coordinator for more info. Make sure to carefully review the informed consent. Consult with your doctor.
@michelerhee: Talk to your doctor! Even if they’re not running a trial, they’re a great resource! If you want more info on a specific trial, the clinical trial listing on clinicaltrials.gov often has contact info.
@JDRF: Also, be sure to let your endo know you’re interested. Many clinics have allocated spots in trials.
@ResearchAmerica: Consulting your physician is the best way to find which trial suits your needs.
@Alzheimers_NIH: Sign up for a registry or matching service to hear about studies or trials available in your area.
@iCANResearch: Talk to your doctors and nurses! Study participants are needed in all varieties – minorities, children, healthy controls, etc.
Q4: What are some of the most important questions to ask before getting involved in a clinical trial?
@CISCRP: What’s the purpose of the study? If the treatment works, can I keep using it? More important questions.
@TrialReach: The most important questions patients can ask are about what the treatment will be and how it differs from the current standard of care.
@JDRF: For trial participation, care of YOUR type 1 diabetes first is most important. Know whether the trial is drug or tech-based, and understand how your type 1 diabetes reacts to change.
@TrialReach: It’s important to understand expectations. How many visits over how long? Do I have to travel? Etc. …Don’t be afraid to ask!
@Alzheimers_NIH: Ask what safeguards are in place to protect participants. More here.
@JDRF: Understand what’s going to be required of you. Schedule? Nighttime checks? Hospital stays? Log books? Ask if there will be monetary compensation for travel, required meals, or a stipend. Ask about side effects and what your endo needs to know – should this be written into your care plan?
@michelerhee: What is being tested? What do they hope to see? What are the possible side effects? What are my other options? Ask to take the informed consent home with you so you and your caregiver(s) can read thoroughly.
@ConsultPolaris: How/when will the results be shared with me?
@Campaign4Cures: Find out its purpose. Why will this be important? How will it advance medical progress and help find cures?
@ronelhentschel: Who is behind the funding of the product and risks of side effects?
@TrialReach: @ronelhentschel It’s definitely really important to understand this!
@FingoHead: What are risks/benefits? What is expected of me? Will I have costs? What tests are involved? What was learned in previous studies?
@helpme_health: Do you have a financial interest in the outcome?
@GoPraxis: Ask how the trial may affect your daily life and about participation requirements.
Q5: What’s the biggest misconception about clinical trials?
@FDAOMH: Many people think minorities don’t want to participate due to historical abuses. Not (all) true! Most of the time, health providers don’t ask minorities to participate.
@CISCRP: That they’re unsafe – they’re safest, fastest way to find new treatments. More trial myths debunked here.
@TrialReach: There are so many! But probably that patients are just guinea pigs. They are partners in research and key to medical advances.
@CISCRP: MYTH: Study volunteers are ‘guinea pigs’ FACT: They are valued partners in research process!
@Alzheimers_NIH: That healthy people can’t participate in clinical trials! We need all kinds of people to understand.
@michelerhee: Clinical trial participants are not guinea pigs! More data may be needed to confirm earlier findings.
@TrialReach: We also hear patients concerned about receiving a placebo. The fact is that most trials test new drug vs. current standard of care.
@JDRF: “It’s going to disrupt my routine.” Many just ask you to log your day to day.
@michelerhee: Not every clinical trial you take a drug. Some are following you over time or asking questions/surveys.
@JDRF: “It’s going to be fun!” Sometimes trials are taxing, both emotionally and physically.
@iCANResearch: Misconception: children are little adults. If medication is effective in adults, it will work for children at lower dose.
@FingoHead: Myth: Once you commit, you can’t back out of a clinical trial. Myth: I’ll probably get placebo. Myth: It’s too dangerous.
@JDRF: “I’m just going to get a placebo anyway.” Not many type 1 diabetes trials are structured as such.
@asipocz: Clinical trials can be a treatment option and aren’t just a ‘pop up’ shop to be mistrusted.
@JDRF: “If it’s not for a cure, it’s not important.” All trials unlock a key to the process.
@TrialReach: @JDRF VERY true. All information is useful.
@FingoHead: @JDRF YES! No study is ever a failure. Something is learned from every clinical trial.
@Campaign4Cures: That they are dangerous or painful. In fact, they are safe and go through rigorous process all before trial.
@ronelhentschel: A lot of trials are focusing on a product to improve diabetes management and not a cure.
@GCPWorks: Misconception: Your doctor will always offer you information on clinical trials.
@TabbyMitchell: That all rare diseases have trials and research going on! Assumption made at EVERY presentation I give!
Q6: How can we tackle these misconceptions?
@CISCRP: Let’s work together as an industry to provide resources that empower patients/public to be more informed about clinical research.
@FDAOMH: Healthcare providers, ask, ask, ask! Share available trials, especially with diverse patients.
@INC_Research: We must help providers communicate the availability of clinical trials to patients.
@Alzheimers_NIH: Get more participants talking about their experiences!
@JDRF: Participants should share their stories – blog, tweet, vlog – once allowed, share your experience!
@Campaign4Cures: Encouraging information – sharing and education at every level within the process.
@TrialReach: Education, education, education! The more information that’s out there the better! Chats like this are really helpful too. And, patients who share stories of taking part in trials can play a big role in tackling these misconceptions as well!
@ResearchAmerica: Understanding what causes the misconceptions and barriers to participation.
@asipocz: Engaging participants during and after the trial so all parties have results and know how they helped.
@NUCATSInstitute: @asipocz This is so important!
@JDRF: Read through the details of all available trials. Many could be great fits!
@Campaign4Cures: By urging @POTUS and Congress candidates to invest, make clinical trials and medical research a national priority!
@JDRF: Maintain an open dialogue with your clinic/endo about what trials are available.
@FingoHead: Begin with clinical trial literacy in school. Why teach science selectively? Both volunteering and being aware of the process, removing stigma and knowing options should be taught early.
@DiabeticConnect: Tackle misconceptions about clinical trials by sharing/archiving stories by participants. –Clem
@TabbyMitchell: By sharing trial experiences within potential trial populations.
Q7: What current clinical trials are most exciting to you?
@michelerhee: I am thrilled by all of the rare disease clinical trials!
@TrialReach: There’s so much happening in cancer that we’re following right now. Precision medicine and immunology could change the game.
@Alzheimers_NIH: We are excited about the landmark A4 Alzheimer’s study that is now recruiting nationwide. Check it out!
@GoPraxis: All of the ongoing clinical research on rare disease is very exciting!
@JDRF: We’re funding 50 active clinical trials to cure, prevent and treat type 1 diabetes.
@TrialReach: We’re so excited about what’s happening in diabetes right now. @JDRF is supporting some amazing artificial pancreas research.
@JDRF: Many we talk to are excited about artificial pancreas and encapsulation. All are valuable to help progress research.
Q8: What’s the most common question you get about clinical trials?
@TrialReach: The most common question we get is: How can I get involved? Where do I find a trial? We walk people through the process on our site.
@JDRF: “When will type 1 diabetes be cured?” Funding promising trials is the best way to get there.
@michelerhee: Is there a trial for me? And then I introduce them toclinicaltrials.gov!
@JDRF: “How can I get involved?” Search for type 1 diabetes trials in your area on clinicaltrials.gov
@ResearchAmerica: Trials in precision medicine, immunotherapy and Alzheimer’s have the possibility to yield great results for medical research.
@Alzheimers_NIH: “Is there an Alzheimer’s trial near me?” We direct them to our searchable database!
@FingoHead: Were you afraid? Answer: Hell yes! But more afraid to live in misery. If this hypochondriac can join a clinical trial anyone can.
Q9: How can we work to ensure trials are designed with patients in mind?
@CISCRP: By getting their feedback! CISCRP patient advisory boards can be a big help. Check them out!
@INC_Research: We need to effectively manage relationships between the industry and the patient. Patient input leads to new ideas that can impact their lives and improve research. When we think like a patient, we can design protocols that offer real-life benefits.
@TabbyMitchell: @INC_Research Yes. Yes. Yes. FDA endpoints don’t always equal value in real life.
@FingoHead: @TabbyMitchell Exactly! Patient perspective so crucial. Build empathetic, meaningful research through understanding.
@TrialReach: Involve patients from the beginning! Treat early engagement as market research, and bake that research into protocols.
@ResearchAmerica: More physician involvement to build trust. Physicians matter in clinical trial participation.
@JDRF: For type 1 diabetes, trials should have patient liaisons who can answer questions 24/7.
@iCANResearch: Design trials WITH patients. They know about their schedule, comfort with level of risk, how they want to be approached.
@ConsultPolaris: You’d never design software without involving the user community. We can’t design trials without involving the patient.
Any closing thoughts to share?
@TrialReach: 80% of trials fail or are delayed because researchers can’t find enough patients to take part, which is bad news for everyone! Let’s work together to connect patients and researchers to drive medical research forward!
@INC_Research: Patients help develop treatment options for others with the same diagnoses.
@michelerhee: Being in a clinical trial can help you and others. But never feel pressured! And you can always drop out.
@JDRF: Researchers don’t just look at data, they have conversations with patients about what worked and what didn’t.
@Alzheimers_NIH: It takes all kinds of people to make research successful. Find a way to participate!