2 posts tagged “Jeremy Gilbert”

Bringing the patient voice to clinical trials

Posted October 3rd, 2016 by

PatientsLikeMe has a long tradition of bringing the patient voice into drug discovery and development, but it’s only been in the last year or two that industry has been tuning in to hear what that voice is saying about clinical trials. For the last 18 months, we’ve been asking many of our members about their attitudes toward and experiences with clinical trials, and working to ensure pharmaceutical companies understand what patients want most from trials, now and in the future. We talked with Jeremy Gilbert, Vice President of PLM Health, and Paul Wicks, Vice President of Innovation, about what we’ve found, and how that’s already helped to change the design and execution of trials and their future direction. Jeremy will be presenting more about this topic and details of a key project with AstraZeneca and Takeda that leverages the patient voice in new ways at the Patient-Centered Clinical Trials Conference in Philadelphia on October 11. More info about discounted tickets below.

 

Jeremy Gilbert, Vice President, PLM Health

You’ve surveyed more than 1,400 people about their experiences and opinions with clinical trials. What have they shared, and what has PatientsLikeMe done with that information?

Jeremy: A lot of people in our community are living with life-altering, degenerative conditions, and they’re acutely aware of the importance of new drugs coming to market to address their problems. In conditions like MS, where there are perhaps a dozen treatments on the market, people are keenly aware that the drug they’re taking may stop working, so there is great interest in helping new drugs come to market. Our members are vocal, too, about how involved they want to be. About 92 percent of our survey participants said they would be willing to help researchers design clinical trials to make them better for patients. At the same time, our industry partners are looking for ways to improve trial participation, especially since trials will grow more complex. So we’ve found these two groups want to come together to improve the trial experience for everyone. And there’s no better place to start than by involving patients in the trial design process.

Paul: The state of art in designing trials has been to use the advice of physician experts and to review literature and published papers, but patients have been left out. Researchers have told us this is because of legal and regulatory concerns about asking patients about experimental treatments; they don’t want to be seen as promoting a treatment that hasn’t yet undergone testing. They also cite their lack of experience and fears about the extra time it might take them as reasons why they’ve carried on with the status quo. We’ve long believed that online communities like PatientsLikeMe provide a great vehicle to attack those barriers. We can act as an honest broker of information between researchers and patients who want to help, we’ve developed a repeatable methodology to gain patient input, and we’re delivering results in a matter of weeks to researchers to improve their protocols. Increasingly now researchers are coming to us before they design their trial to incorporate the patient voice, which is a great step.

Does what patients want from trials depend on the condition they have?

Paul Wicks, PhD., Vice President, Innovation

Paul: Some elements, such as their desire to altruistically help other patients like them, stay remarkably consistent. But depending on their demographics and the impact of disease, we do see a lot of variation. Working age adults might want extended hours so they can participate outside of normal business hours, whereas older people might prioritize having transport organized for them. It really depends on the aim of the study as much as the condition; some trials are for drugs that slow the progression of a disease, while others are to treat specific symptoms or even to take an existing drug and make it more convenient to take, such as moving from an injection to a pill. Against that you’ve also got the overall commitment required to the trial protocol such as the number of study visits, their duration, any special testing that people have to undergo and, of course, any special measures put in place to mitigate those burdens. We think patients are interested in participating in research in general because of altruism, that they choose to enroll in a particular trial because of its objectives, and that they stay enrolled because of their relationship with trial staff and the level of burden the study incurs on their daily lives.

The design of a trial is just the start. What happens as trials begin, or end?

Jeremy: We’re starting to see another gap now, which is that companies have no way of soliciting feedback from patients as they participate in a trial, to find out what patients think of real trials. This is a surprise, because given most of us are consumers, we’re used to being able to give feedback about a product or our experience at any time. That inspires us to think about how to gather patient input not just about a trial’s design, but also during the trial itself, and even after it ends. And if we can figure out how to share the knowledge that’s gathered, that would help industry design and run even better trials in the future.

Where do you think trials are headed in the future, and how is the idea of patients as partners instrumental in guiding that direction?

Paul: Today, taking part in a clinical trial is like having a part-time job. In the future, we want it to be much more convenient and to harness the digital technologies that have become a normal part of daily life. We’re also looking at novel technologies to see if we can do away with some of the aspects of trials that patients dislike, such as placebo arms. Using online digital platforms, it might be possible to produce enough carefully-matched historical controls to more rapidly identify when a treatment is having an effect. That could reduce costs, speed up trials and ultimately increase the number of “shots on goal” that researchers can take to fight disease.

 
Note: Jeremy will be presenting more about this topic at the Patient-Centered Clinical Trials Conference in Philadelphia on Tuesday, October 11 at 2:00 PM. He’ll be joined by Arnold Degboe, Director of Patient Reported Outcomes, Health Economics and Outcomes Research at AstraZeneca. They will talk for the first time about their work to change clinical trials with patient feedback. Discounted tickets for patients and industry participants are available from the conference organizer. Please contact Katie Gadsby for further information at kgadsby@eyeforpharma.com.

 

 

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PatientsLikeMe Adds Three New Executives to Its Leadership Team

Posted June 28th, 2012 by

New Appointments Cap Active Year, Solidify Team for Strategic Growth

PatientsLikeMe, the leading health data-sharing website, announces the appointment of three new executives to its leadership team.  The company, which recently expanded its website to invite patients with any disease, makes this move to focus on expanding the collection and use of real-world disease knowledge to improve patients’ personal experiences and health outcomes.

PatientsLikeMe President and Co-founder Ben Heywood comments,  “Our new teammates—Michael, Sebastiaan and Jeremy—have the operational and leadership experience we need to help guide our strategic growth. I’m excited about the foundation we have built, and about the positive impact we’ll have on patient care, now and for many years to come.”

The following executives round out the PatientsLikeMe leadership team, led by Heywood and his brother, Co-founder and Chairman Jamie Heywood:

  • Michael Evers, Executive Vice President of Marketing
    A consumer and technology marketing expert, Evers joins the company to spearhead business to business marketing and member acquisition. Before joining PatientsLikeMe, Evers was Global Vice President of Marketing for Artfact, the world’s leading live auction software and services provider, and earlier President of BroadMap, a provider of industry-leading geographic data products. Evers’ geospatial industry experience started at TomTom in 2005, where he was the Global Vice President of Marketing and Business Development for the company’s Tele Atlas business unit. Evers has also held senior positions at Motorola and AOL Time Warner.
  • Sebastiaan Foppema, Executive Vice President of Business Operations
    As lead of the newly-formed Business Operations team at PatientsLikeMe, Foppema manages the business development, client services, research and health data integrity team. Most recently, he served as Senior Vice President of Provider Sales and Operations at NaviNet, a healthcare communication network that connects 70% of U.S. physicians with the leading health plans in the country. Prior to NaviNet, Foppema worked for a number of consulting companies in Europe and the U.S. He also formed a healthcare consulting practice in the Boston area, focused on payers and providers.
  • Jeremy Gilbert, Head of Product
    A seasoned business development and innovation professional with expertise navigating the healthcare value chain, Gilbert leads product strategy and development efforts at PatientsLikeMe. Immediately prior to joining the company, Gilbert was an Engagement Manager at McKinsey & Company’s healthcare practice, where he led strategy and execution projects for Fortune 500 clients. He is also a co-founder of four technology startups, and has invented and launched notable products in e-commerce, mobile and discovery bioinformatics. A true technologist, Gilbert has developed software since the age of seven and spent more than 14,000 career hours in software design and construction.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and https://blog.patientslikeme.com]