Diabetes Trial Chat: What You Missed

Thanks to Healthline for this guest post! Click here for the original article.

In January, Healthline hosted a Twitter chat (#DiabetesTrialChat) to talk about the challenges facing people with type 1 diabetes’ access to clinical trials aimed at finding new treatments, and potentially a cure. Taking part in the chat were:

• Sarah Kerruish, chief strategy and growth officer at TrialReach. (Follow them@TrialReach)
• Amy Tenderich, founder and editor-in-chief of DiabetesMine. (Follow them@DiabetesMine)
• Dr. Sanjoy Dutta, assistant vice-president of translational development at JDRF. (Follow them @JDRF)

Read on to see what problems, and potential solutions, they and our wonderful community identified!

1. Over the past ten years, how has diabetes research changed the lives of patients?

Dr. Sanjoy Dutta: “Increased awareness, decreased burden, reimbursement of continuous glucose monitoring (CGM), better outcomes using devices, and earlier diagnoses.”

Sarah Kerruish: “It’s changed everything. From islet transplantation to a potential artificial pancreas — huge progress has been made… I loved this article from the American Diabetes Association on all the progress made in the last 50 years.”

Amy Tenderich: “Research has given us CGM and soon artificial pancreas, andTrialNet to learn about causes of diabetes — amazing!”

From our community:

@everydayupsdwns: “Plenty of new gadgets and concoctions to smile about in T1D… Sensor augmented pump therapy springs to mind. Insulin analogues have helped many, but smart insulin looks amazing”

@ninjabetic1: “seeing that diabetes research is high up on the agenda gives me hope that I’ll have a happy & healthy life”

@JDRFQUEEN: “So much change. I first wore a Guardian Medtronic CGM in 2007. It was horrible, 100–200 pts off. Now AP worthy.”

2. What role do patients play in diabetes clinical research? What role should they play?

AT: “Patients should be MUCH more involved in conceptualizing studies! Check out the new VitalCrowd. See Anna McCollisterSlip launch slides on VitalCrowd crowdsourcing of diabetes clinical trials here.”

SD: “Patients should also play an active role in providing perspective and feedback into trial design and outcomes.”

SK: “Yes! Influencing design is critical! They should play a HUGE role! Patients can best articulate their needs, so researchers should be listening carefully.”

From our community:

@AtiyaHasan05: “honesty. Being honest about what they are and are not doing according to research protocols.”

@ninjabetic1: “I think patients keep diabetes research on [its] toes (in a good way!) — The #wearenotwaiting projects are proof of that”

@JDRFQUEEN: “Clinicaltrials.gov [is a] good starting point for those looking to get involved in research!”

3. How can we better communicate the problem of a lack of clinical trial participation with patients?

AT: “Matching service for diabetes patients and researchers, like Living BioBank.”

SK: “Education! We’re doing our best to spread the word — 500,000 patients are needed for diabetes trials in the U.S., but 85 percent of trials are delayed or fail due to enrollment issues. That’s bad news for patients AND researchers.”

SD: “We need to be CANDID about each patient’s importance. They’re ambassadors of these trials and the greater good of all living with type 1 diabetes. Streamlined participation is key! Don’t bring the patient to trials; bring trials to the patient.”

SK: “Yes!”

From our community:

@ninjabetic1: “Ask HCPs to share this info better with appropriate patients. Research has never been mentioned to me in 13.5 years!”

@AtiyaHasan05: “explaining [the] complete process and their integral role in it. Most don’t fully understand how trials work.”

@everydayupsdwns: “Harness the power of social media! …Many studies suffer as [they are] geographically limited.”

4. What do you think are the most common barriers to clinical trial participation? How can they be addressed?

SK: “Access! The info out there is for researchers, not patients — that’s why we created Match. We need to put patients at the center of research. What’s important to them? Dave deBronkart taught us this.”

AT: “People often e-mail us at Diabetes Mine asking how they or kids with type 1 diabetes can get involved in trials. Where is best to send them? The problem is that Clinicaltrials.gov is so VERY HARD to navigate.”

SD: “Direct and indirect participation is key, as well as open communication. A supportive ecosystem of caregivers & HCPs. There can be a mistrust of trials. Share the bigger picture and move from trial-centricity to patient-centricity.

AT: “Great idea! How would you suggest they accomplish that?”

SD: “Trials BASED on patient input. What would make their type 1 diabetes manageable? What are their preferences and limitations?”

SK: “It’s simple. Information and access. The vast majority of people don’t know about clinical trials. We’re trying to fix this.”

From our community:

@davidcragg: “Important factor for me is to see a commitment for the full methods and results to be reported regardless of outcome.”

@gwsuperfan: “More participant-friendly trials would increase participation. One wanted me to stay in a facility for [over two weeks]… Not a realistic thing for [people with diabetes] with jobs/school/lives.”

@everydayupsdwns: “Depends on trial design. Could be any number of things… I have offered participation several times, and signed up to be ‘found’ but only ever recruited by own clinic.”

@lawahlstorm: “Overcoming misconceptions about trial participation. The “guinea pig” fallacy.”

@ninjabetic1: “Time: how much time do I need to commit? Outcomes: will we seen results? Requirements: what do you need from me?”

5. How do we make clinical trials more focused on the needs of patients?

SD: “Reduce protocol complexity, and specific patient wants should be built-in when considering product development.”

SK: “Design with patients in mind! Researchers should think like patients and make sure it’s easy to take part in a trial. And don’t be afraid to ask! Patients know what’s best for patients, and researchers should take advantage of that.”

AT: “Also, we need something like Diabetes Research Connection to track what your trial is accomplishing.”

From our community:

@lwahlstrom: “Involve patients in every stage of trial design — beyond ‘test piloting.’ Community input is key!”

@ninjabetic1: “Run more tweet chats like this. Focus groups. Read blogs. Talk to us. Go past HCPs to reach the patients”

@JDRFQUEEN: “And not that one needs to be paid outrageous sums, but reimbursement for time and gas is a big incentive [for] participants.”

6. How can I find out which clinical trials to take part in?

SD: “A combination of personal research and the input of your health care provider.”

SK: “Check out our new tool, TrialReach Match — answer a few questions and our system will find trials for you!”

7. What resources do you recommend to learn more about clinical trials?

SD: “Clinicaltrials.gov, as well as JRDF.org”

SK: “Our friends CISCRP offer some great resources. And the diabetes online community is a great way to learn about personal experiences.”

8. What potential diabetes therapeutic advances are most exciting to you?

SK: “So many! I’m most intrigued by the artificial pancreas — imagine how many lives would be changed. I’m also interested in new research on turning stem cells into pancreatic beta cells — feels like major progress!”

AT: “Seriously. Patients and providers interviewed for [our] diabetes and marijuana article say STUDIES NEEDED. We’re excited about studies that will allow CGM to replace finger sticks.”

SD: “Automated artificial pancreas systems, beta cell replacement (encapsulation), kidney disease trials… Novel drugs for better glucose control, trials to preserve beta cell function.”

SK: “Two big, promising artificial pancreas trials coming up in 2016 via Harvard Research and UVA School of Medicine.”

From our community:

@OceanTragic: “OpenAPS for sure”

@NanoBanano24: “AP seems really close! Very excited about that.”

9. How close to a cure for diabetes do you think we are?

SK: “I don’t know how close, but just yesterday, this news gave me hope.”

From our community:

@delphinecraig: “I think we still have a long way to go to a cure.”

@davidcragg: “Not in my lifetime. A lot of media hype about cures around the corner are about securing funding for research”

@Mrs_Nichola_D: “10 years? Joking aside, I really don’t know. But not as quick as I’d like it to be.”

@NanoBanano24: “closer than ever! I’m 28, not sure it’s in my lifetime. A fabulous AP could be around in 10 years. Cautious optimist.”

@diabetesalish: “told for 38yrs that [diabetes] will be cured in 5 to 10 years. I need results not projection”

10. What’s the one thing you wish patients knew about clinical trials?

SD: “I wish patients knew how important they really are… Patients are players in and directors of a path to greater good for those living with type 1 diabetes.”

SK: “Most often, I field questions about finding trials — patients come to us when they’re stuck, and we help them find a trial. We have an amazing team who can help you find a diabetes trial. We list all trials, so no bias.”

From our community:

@lwahlstrom: “80% are under enrolled preventing important breakthroughs & all participants get min. standard-of-care treatment.”

11. What is the biggest myth about clinical trials?

AT: “I’d say the biggest myth is that diabetes trials are only open to the ‘elite’ and not accessible for all. We need to spread the word!”

SD: “Striking a healthy balance as to what clinical trials are and are not is key. Some cynics feel that patients equal lab animals. That’s untrue. Idealists may feel that every trial equals a therapy. That’s also untrue. Balancing science, expectations, and hope are what clinical trials are made of.”

From our community:

@davidcragg: “Biggest myth is that all trials are well designed & data always published -many never publish, making input less valuable… patients need to feel it’s not tokenism but a key part of the process they have influence in (from the start)”

@delphinecraig: “I think myths incl. no compensation, uneasy about drugs/clinics/clinicians, cost to participant.”

@JDRFQUEEN: “’Messing up’ results. You always have the right to withdraw if your management is suffering.”

Originally published at blog.trialreach.com on February 9, 2016.