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Transforming the Way Diabetes Patients Match to Clinical Trials

If you’re reading this, chances are you are either living with diabetes, or know someone who is. It’s no surprise; the disease impacts one of every 11 people in the US. Whether the patient is you, a family member, or a friend, you’re no stranger to the daily struggle of maintaining insulin levels, of weighing every dietary choice against potential health ramifications. You know the annoyance of daily finger pricks and the stress of endless medical bills. You know the worry that comes with increased risks of blindness, kidney failure, heart disease, and stroke.

These complications mean that we have a lot of work to do. So how can we improve diabetes management, reduce the incidence of complications, and maybe even find a cure? The answer – the promise of better days, the hope for brighter futures – lies in medical research.

But, there’s a problem. There are more than 1,300 diabetes clinical trials taking place in the United States, but many of them won’t come to anything due to a lack of patient participation. There can be no progress in medical research without patients taking part in trials.

Patients don’t get involved with trials for lots of reasons – but one of the most significant is that right now, there is no easy way to search for clinical trials. The process involves searching online through hundreds of clinical trials – and even if there’s a match, trials are usually described in language that most people find difficult to understand. And that’s where we come in.

We’re a patient-focused technology company dedicated to connecting patients like you – or anyone living with diabetes – with clinical trials. We have recently launched a smart search tool that uses cutting-edge technology to scan all open diabetes trials in the US and generate personalized, easy-to-understand clinical trial options. All you have to do is answer a few questions and our search engine will scan every open diabetes trial in the United States to find the right trials for you. Then, we make it easy to get in touch with researchers running the trials.

One in 11 people in the US could be a part of getting new drugs and life changing treatments to the people who need them. They will be test pilots, pioneers braving uncharted medical frontiers.  Are you one of them? Even answering a few questions can help medical researchers understand more about diabetes.

What are you waiting for? Check out

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Dear Caregivers,

Your mornings start early, and many nights are sleepless. You spend your days taking care of someone else. Maybe that someone else is your mother struggling with dementia, or your husband dealing with osteoarthritis. Maybe it’s your child who has diabetes, or your brother battling cancer. No matter what the situation, you are always on duty, with few precious moments for yourself. It’s exhausting and stressful – and so, so important.

a5e8b4401a701eb4ae485e5c266bcadeNovember is National Family Caregivers Month. A whole month dedicated to the people like you who put others before themselves and devote themselves to ensuring that those who are sick, disabled, or elderly feel secure and cared for. There are 65.7 million people like you in the United States. For many of you, the job of caregiving lasts for three years or more, and takes up so many days out of each month. It can be all consuming – which makes it all the more important to remember a key element of caregiving…

We know that as a caregiver, you can get into a pattern of spending so much energy taking care of your loved ones that it can leave very little time for personal rest and relaxation. Caregiving is a tough role – it puts you at at risk for emotional, mental, and physical health issues related to chronic stress. It probably goes against your nature to take some time for yourself – many caregivers are all too familiar with the feeling of guilt that can come from taking a break. But, that break is essential.

In fact, it’s so essential that the Caregiver Action Network chose “Respite: Care for Caregivers” as the theme for this year’s National Family Caregivers Month. They remind us that taking some time to replenish not only can improve your health, but also can strengthen relationships with your family and keep you from getting burned-out. What does this replenishment look like? As caregiver Barry Jacobs notes in his recent AARP column, it means eating and sleeping well, maintaining important relationships, and taking time to relax.

If you’re still not sold on this idea, here’s more good news. A bit of relaxation for you can allow your loved one to “stay at home up to three times longer” than if you don’t make time for yourself, and can often make you a better caregiver. It makes sense: Barry writes that, “life without any fun makes me a cranky caregiver. When I play basketball or see a movie, nap or read, I put energy back in my tank and then have more to give.”

So, in honor of National Family Caregivers Month, we encourage you to unwind. Let a friend help you for a day or two, or call a family member to take the reigns temporarily. Reap the benefits of filling up your tank.

Thanks for everything you do. Let’s keep taking care of each other.

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For Health Literacy Month, a Look at the Importance of Communicating with Patients

Health-literacy-month“Take two pills a day.” “Take 1.5 tsp every four hours.” “Sign here to consent to surgery.”

To some, these seem like clear enough doctor’s orders. But to the 14 percent of adults whose health literacy (or the degree in which people understand information needed to make health decisions) is “below basic,” these statements can be confusing and difficult to understand. Is it two pills in the morning or one in the morning and one in the afternoon? What does “tsp” stand for? And how can I sign if I don’t understand?

For those with low health literacy, these details can make doctor’s visits incredibly stressful. In this video from the American Medical Association, one patient notes that when faced with too many forms, he has left a doctor’s office. Another signed all forms she didn’t understand and later learned she had been given a hysterectomy she was unaware of.

Even patients who feel confident in their reading and numeracy skills may not be considered health literate; in fact, only 12 percent of adults have “proficient health literacy.” Nearly nine out of ten adults may not have the skills they need to manage their health effectively. notes “health literacy affects people’s ability to:

  • Navigate the healthcare system, including filling out complex forms and locating providers and services
  • Share personal information, such as health history, with providers
  • Engage in self-care and chronic disease management
  • Understand mathematical concepts such as probability and risk”

Low health literacy has been linked to patients skipping preventative appointments and procedures, which results in a sicker patient when they ultimately enter into the healthcare system. It also means that, in these patients, health outcomes are generally poorer, hospitalizations are more common, and chronic conditions are typically not well controlled. Elements that affect the risk of low health literacy include level of education, language ability, culture, socioeconomic status, and age.

October is Health Literacy Month, a time “to promote the importance of understandable health information.” We could not be more supportive of this idea. Meeting patients at their levels of health literacy is absolutely crucial – especially in clinical trials, when concepts and procedures may be new or complicated, and protocols are written for researchers, not patients. One of our core beliefs is that “all clinical trials should have a plain English summary that is easily accessible,” and that’s why we’ve created a simple-to-use system through which patients can be matched to trials by answering a few questions related to their health. We’re doing our best to keep the language as accessible as possible, and hope that this approach will lead to big changes in the way that clinical research is carried out.

So tell us, how are you observing Health Literacy Month?

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The Power of the Network

This blog post was written by James Hayden, the TrialReach VP of Sales. 

Applying the Network Effect to Clinical Research

Screen Shot 2015-10-05 at 10.16.15 AMIf the 20th century was the era of Moore’s law, the 21st century is clearly the era of Metcalfe’s law, or the network effect. Robert Metcalfe was one of the co-inventors of the Ethernet and argued that the value of a network is proportional to the square of the number of users. Bringing people together around common themes has unlocked an unprecedented amount of economic value and has created a level of convenience in our daily lives we now take for granted. We all have our favorite apps to connect with friends or colleagues, hail taxis, or find and reserve tables at restaurants. The value of these apps comes from the critical mass of users converging around a common theme.

Now, imagine if we could apply this same network effect to clinical trials. The statistics on clinical research are clear: there are over 58,000 open recruiting trials today searching for over 50 million patients, but only 3% of patients are even aware of clinical trials. The only scalable, efficient way to reach this staggering number of patients with an interest in advancing medical science is by harnessing the network effect. Can we bring together a critical mass of patients with a common interest in exploring potential treatment options and advancing clinical research? And if so, can we easily bring clinical trials to the patients, instead of expecting the patients to find the trials?

Let’s say that a patient was aware of clinical research and wanted to search for a trial that is right for them. Where would they begin the process? According to a recent article by CISCRP, 45% of clinical trial participants start their research process online. Where do they go? They start with trusted patient communities and advocacy groups. They start with healthcare portals to find the latest medical research. And they start with highly reputable non-profit organizations that have been supporting research in specific disease areas for years.

TrialReach is launching a question-based clinical trial search engine, beginning with diabetes, that will revolutionize the way patients and their caregivers find clinical trials. The trials are updated nightly by our automated platform and the questions are generated by a combination of human curation and an intelligent algorithm that quickly pares the list down to only eligible trials.

In preparation for the launch, TrialReach is partnering with hundreds of patient advocates and organizations to build a network to reach millions of patients and caregivers. TrialReach works with partners to implement the easy to use search tool on their websites and social channels as a free resource to their community members. Now, by answering a handful of questions, interested patients and caregivers will find a personalized set of relevant trials for which they may be eligible, within a community they trust.

For the first time, patients will be able to search for relevant trials and connect with researchers and trial sites quickly and easily. The power of the network effect will soon begin to unlock incredible value for patients exactly as we have seen in many other facets of our life. TrialReach is now bringing clinical trials to the patients.

About the Author

jamesJames Hayden is responsible for developing our client relationships with clinical trial sponsors and CROs. He has over 20 years experience driving growth in the biopharma industry for some of the leading companies developing novel solutions to reduce the time, cost and risk of drug development. He is passionate about creating strong partnerships based on a foundation of trust that foster mutual success.

James has a BSc degree in Electrical Engineering from Boston University and an MBA from Rutgers. When James isn’t working, he and his wife enjoy traveling and making sure that the passports of their three children have plenty of new stamps.

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From Public Relations Executive to Chronic Pain Patient

One inspiring patient shares an important message: YOU are your own best advocate

Every once in a while, we hear a patient story that gets to the heart of why we do what we do, that reminds us why we are working every day to help patients find and take part in clinical trials. Linda VandeVrede has one of those stories.

She’s a former high-tech PR executive who is anxiously awaiting medical advances that may offer some relief from her chronic pain. Linda’s been a supporter of TrialReach since she found us through social media – she believes that in the medical community, self-advocacy is key. So how did a thriving career woman become a patient advocate and one of the loudest voices for chronic pain research?

Photo by Michael Ging Photography

Photo by Michael Ging Photography

Linda’s pain started during flights to and from Europe. The pain would kick in, but it would subside when she landed and she’d forget about until the next flight. The tech world was booming, and Linda didn’t have time to dwell on the pain. She didn’t have time, that is, until 2007, when she felt an incredible jolt of pain in her right leg, unlike anything she’d felt before. She left work and went to her doctor’s office immediately. X-rays revealed no issues, and Linda’s quest to figure out her medical condition began.

The next five years were devoted to finding an answer. Linda was forced to give up the career she loved because she could not tolerate sitting or standing in front of a computer for any real length of time. She tried everything, from neurologists to acupuncturists, from cranial sacral therapy to physiatrists. No one could provide any answers, or even any relief. She began to think that doctors didn’t want to see her: “after awhile, you get the sense that because doctors can’t find anything, either they don’t believe you’re really in pain or they just want to move on to someone they can help.” To add insult to injury, Linda is someone whose body cannot tolerate opiates – they either have no effect or she winds up in the emergency room.

Desperately searching online for answers, Linda came across an online forum of people with the same symptoms she had. In talking to members of this forum, she found her answer: Piriformis Syndrome, a condition in which the piriformis muscle constantly suppresses the sciatic nerve. It’s very uncommon, and is typically caused by either repetitive or sudden trauma. Online research uncovered a paper on the condition that sounded like it could have been written about Linda. She reached out to the surgeon who had written the paper, and when she went to see him, he instantly knew how to trigger her pain. Thrilled that she had found someone who finally “got it,” Linda agreed to an invasive surgery, where the doctor released tension from her nerve but found irreparable damage to her sciatic nerve. While she found some relief from the surgery, if she had had this procedure ten years earlier, the results would have been different.

Unable to find relief surgically or medically, Linda lives in a constant state of pain. She speaks out against sensationalist media stories about drug-addicted pain patients, and is anxiously awaiting trials for a new class of medication called a sodium channel modulators.  While she considers herself well-educated on chronic pain and her treatment options, she continues to find “ so incredibly frustrating.” She says the multitude of names for chronic pain makes her condition terribly difficult to research, and can’t wait for TrialReach to take on chronic pain to structure eligibility and remove the guesswork from trial searching. We assured her it’s on our list! While she waits, Linda is shouting from the rooftops about the importance of research in this field, and building a large network through social media that allows her to connect with some of the 100 million other people who experience chronic pain. She says, “when you have pain, you’re not likely to get out there and advocate for yourself. It’s disabling, but people can’t tell you have a disability. You can spiral. I try to stay positive for me, and for everyone else.”

Linda’s message to other patients is to realize early on that you are your own best advocate – educate yourself, and don’t be afraid to take the lead in doctor’s appointments. While the doctor is an expert in medicine, you are the expert on you and how you are feeling. We couldn’t have said it better ourselves. Linda, you’re an inspiration to all patients – especially those unsatisfied with current treatment options. Thank you for taking the time to share your story with us!

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An ADA Scientific Sessions Top Ten

We’ve been hard at work perfecting our new diabetes clinical trials smart search tool, and have finally had some time to reflect on the incredible experience we had at the American Diabetes Association Scientific Sessions last month. We were blown away by the research presented, the connections we made, and the dedication we saw to improving the lives of those living with diabetes.

Since we’re already missing David Letterman, we’d like to share an ADA top ten. Here are the top ten things we found remarkable about ADA:

  • The ADA’s new CEO, Kevin Hagan, was fantastic at the conference. We’ve rarely seen a chief executive be so approachable and responsive. We so appreciate that when we reached out, he got back to us in minutes. We look forward to continuing to see him lead by example.
  • We had the pleasure of screening the PBS documentary Journey to a Miracle: Freedom from Insulin, an amazing story of how researchers all over the world came together to find the genetic mechanism for monogenic diabetes, a type of diabetes caused by a mutation in a single gene. It’s estimated that about half a million people fall into this category and may unnecessarily be receiving insulin. What a wonderful example of what can happen when patients and researchers come together with a shared goal.
  • The level of online engagement we saw around ADA was phenomenal. The hashtag #2015ADA reached about 50 million people, and the engagement levels were impressive. We loved hearing from our friends at Diabetes News, Diabetes Mine, and Diatribe News, and were especially impressed by the advocates who came out en masse to share news from the conference. Special shout out to some frequent tweeters: @insulinnation, @KellyRawlings, @joyclee, and @CureT1Diabetes.
  • The ADA crowd-sourced inspiration through a board on which attendees could write what they’re hopeful for in the future of diabetes care and management. We saw some great suggestions, like oral insulin, better screening and diagnosis, and beta cell regeneration. We’re so glad to see this community thinking big and aiming high!
  • We attended a presentation from Amy Tenderich of Diabetes Mine about the role of social media in diabetes. Amy pointed out that the diabetes online community is a great place to connect, share, commiserate, motivate, and spread awareness. We couldn’t agree more, and will be watching out for more research on the relationship between online patient engagement and health outcomes.
  • The packed house at the Afrezza inhalable insulin product education session was a sign of how excited the community is about this new method of treatment. Hopes are high that the fact that Afrezza mimics the way the body uses insulin will allow for more effective blood sugar control – and that replacing injectables will improve daily life for those living with diabetes. The promise of this product motivates us to keep helping drive more and better diabetes research.
  • We loved seeing David Marrero, the ADA’s President of Health Care and Education, on stage declaring that, “we must address diabetes from the patient point of view.” What a powerful message to share with this those of us attending ADA, and beyond. We were thrilled to see patients being elevated at ADA.
  • At the #wearenotwaiting data event, we heard from companies like Tidepool and Livongo Health, who are transforming diabetes care by facilitating data sharing. We believe these companies are well on their way to addressing the innovation bottleneck that spurred the #wearenotwaiting movement.
  • On the topic of #wearenotwaiting, we were also inspired by the individuals advocating for change in diabetes research. The advocates onsite were loud, proud, and easy to cheer on. One of our favorites was Anna McCollister-Slipp, the cofounder of Galileo Analytics, who spoke eloquently on the need for change in the way we treat data around diabetes research.
  • Lastly, kudos to the ADA for one of the most phenomenally well-organized events we’ve ever attended. The organization hosted 18,000 attendees and each session, presentation, and discussion was given full attention and run incredibly smoothly. Thanks for making this conference a pleasure to attend!

We’re already looking forward to attending next year. In the meantime, if you’re interested in diabetes research and patient empowerment, stay tuned for news on our new simple search tool that uses cutting-edge technology to scan all open diabetes trials in the US and generate personalized, easy-to-understand clinical trial options.


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What You Need to Know About Genomics

TrialReach’s very own Sarah Kerruish will be participating in a Google+ hangout tomorrow focused on how industry partners can all work together to increase patient engagement in genomics testing. The panel, which includes heavy hitters from Genentech, Washington University, N-of-One, and Expression Analysis, a Q2 Solutions Quintiles Quest Joint Venture Company, will discuss how genomics testing can be better incorporated into clinical research, and how to talk to patients about this type of testing. We invite you to weigh in and ask questions – RSVP for the event here.

The topic is a complex one, but because we know that patient points of view are critical, we’ve outlined a few basics we think you need to know about genomic testing ahead of tomorrow’s event.

  • Precision medicine is an approach to disease prevention and treatment that takes genetic differences into account. It is based on the fact that humans are not all the same, so one-size-fits-all treatment options are often not the most effective choice.
  • Thanks to recent scientific and technological advances, doctors can take a close look at your genetic makeup to help determine what mutations may have led to a particular illness.
  • Mutations may be either inherited, meaning you were born with them, or acquired, meaning lifestyle or environment caused a gene to change. For example, lung cancer is often caused by smoking because cancer-causing chemicals in cigarette smoke cause genes to mutate. But, lung cancer can also occur in non-smokers, and in those instances, family history may be implicated.
  • The fact that doctors can identify which mutations are causing a certain illness through genomics testing is crucial as new treatments are being developed that can target specific mutations. This means, for example, that if a mutation is causing cells to divide uncontrollably, a drug targeting that mutation can suppress cell division and slow the growth of a tumor.
  • This type of genomic testing is beginning to come into play in clinical trials, as researchers test new drugs targeted at specific mutations. Clinical trials testing these targeted therapies will exclude patients without the specific mutation, so it is important that patients educate themselves on the specifics on the gene-related details of their disease. If you’ve had testing, your doctor should be able to give you these specifics, and there are a multitude of resources available online to find out more. For example, the American Cancer society has a great primer on genomic testing and cancer.
  • Genomic testing can also be used to help determine the likelihood that you will develop certain diseases during your lifetime. For example, a doctor may be able to tell you if you have a genetic mutation that commonly causes breast cancer, and estimate the chances you’ll get it later in life.
  • What you do with the knowledge that you have a mutation is up to you; some people choose to have preventive procedures, while others practice watchful waiting and regular check-ins with their doctors. For example, some women who discover that they have a mutation that will likely cause breast cancer will choose to have a mastectomy, while others will undergo more frequent mammograms.
  • All genomic tests are voluntary, and you should make sure you discuss the benefits and the risks with your doctor prior to testing.

Now, we want to hear from you! Please feel free to post any questions or comments to that hangout page or on Twitter using #genomicknowhow. Sarah and the rest of the panel will be happy to answer them on Tuesday.


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