40 posts in the category “PatientsLikeMe News”

It’s Clinical Trials Day, and patients are driving change

Posted May 19th, 2017 by

Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed.

Bringing the patient voice to clinical trials has long been part of the PatientsLikeMe mission. Jeremy Gilbert, Vice President, PLM Health and Paul Wicks, Ph.D., Vice President, Innovation, sat down with us last year to talk about the importance of putting patients at the center of drug discovery and development. Check out their Q&A here. Recently, Paul Wicks touched on the purpose behind the latest PatientsLikeMe study on clinical trial design involving the patient perspective, and why organizations need to work on improving their trial process:

“As researchers we know that clinical trials are the best tool we have for identifying new, safe, effective treatments. Patients know this, too, and they’re motivated to take part. But what this research tells us is that actually participating in a trial is not a fun experience; about as much fun as dealing with the worst airlines, banks, or utility companies, and we all know how that can be. This is a call to action to trial designers and sponsors to step up their game and understand that while patients volunteer out of altruism, a clinical trial still has to fit into their daily life and should create as little burden as possible if we want people to enroll and see it through to the end.”

-Paul Wicks

4,718 PatientsLikeMe members took part in the survey, and below is just a snippet of what they had to say. The complete findings of this study have also recently been published – take a look!

How do patients learn about clinical trials?

59% of those who responded said they learned about a trial from their health team, while 24% said they learned via the web. For those who participated in past trials, the first person to suggest they participate was a doctor (43%) or another healthcare provider (19%), and 80% of respondents said they took part in the trial based on their own desire to.

A key takeaway from the study:

Most people are still finding out about trials through their care teams or providers, but when it comes to making a decision to take part, it’s their own desire that motivates them.

Paul Wicks weighed in saying, “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.”

What are patients’ impressions of clinical trials?

Of those who responded, 55% were very or extremely satisfied, and 51% would tell other patients about the trial.

Jeremy Gilbert touched on the issue of patients providing feedback following a trial, “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.”

9% of those who answered the survey considered dropping out of their trial — side effects and worsening of overall health after the trial were the main reasons. Following the conclusion of a trial only 38% of patients recall being told about the results.

To find out more about clinical trials and how to get involved, visit the PatientsLikeMe clinical trial finder tool. Find a trial that’s right for you, search by location, phase, intervention type and more.

Thank you to all who participated and shared their experiences to help bring the patient perspective into improving clinical trials.

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PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases

Posted April 10th, 2017 by

CAMBRIDGE, Mass.–(BUSINESS WIRE)PatientsLikeMe and Shire plc (LSE: SHP, NASDAQ: SHPG) have announced a new collaboration that will support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease.

Shire, the global leader in rare diseases and other highly specialized conditions, will work with PatientsLikeMe to appropriately engage patients and caregivers at every stage of their journey. Through the creation of digitally-enabled research communities and tools, this multi-year collaboration will help those struggling with a rare disease to track and share their experience with others living with the same condition. It will also connect patient-generated health data with genotype and physiological data to enable research outcomes in order to help Shire better meet the specific needs of patients with rare diseases.

Philip Vickers, PhD, Head of Research and Development for Shire, said working with PatientsLikeMe will help the company overcome some of the traditional challenges inherent in understanding rare diseases. “Establishing regular connections with patients and their caregivers has been challenging for researchers studying rare diseases. We typically study patients at a specific point in time in a clinical setting that may be far from home. Our collaboration with PatientsLikeMe will enable Shire to understand how disease impacts patients in their own environment and integrate data from multiple sources on a single platform. Our goal is to gather a more complete picture of the patient and caregiver experience that could potentially guide the development of new, more patient-centered treatments.”

PatientsLikeMe Co-founder and President Ben Heywood said the collaboration will give patients and caregivers new ways to understand their symptoms, treatment impacts and quality of life over time, and new insights into how to improve their outcomes. It will also help both companies advance research for a deeper and more collaborative understanding of health and disease.

“From my own family’s experience, I know that having a rare disease can be incredibly isolating. But as we’ve seen with other conditions, patients and caregivers who connect on our platform have unprecedented control and influence over their experience, and potentially their outcomes,” Heywood said. “Our work with Shire will give patients, caregivers and researchers access to new forms of data that can improve our understanding of the human condition, and help Shire align their operations behind patient-driven directives. We applaud that effort and are delighted to help drive it.”

Karl Hick, CIO for Shire, said that “digital technologies are driving a major shift in healthcare, empowering patients and their caregivers to take greater control of their health outcomes, and enabling better insights into patient needs. The collaboration between Shire and PatientsLikeMe will create an empowered and enlightened community of rare disease patients and caregivers, and integrate cutting-edge technologies to build a full understanding of the disease and diagnostic journey.”

About PatientsLikeMe
PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With more than 500,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Shire
Shire is the leading global biotechnology company focused on serving people with rare diseases and other highly specialized conditions. We strive to develop best-in-class products, many of which are available in more than 100 countries, across core therapeutic areas including Hematology, Immunology, Neuroscience, Ophthalmics, Lysosomal Storage Disorders, Gastrointestinal/Internal Medicine/Endocrine and Hereditary Angioedema; and a growing franchise in Oncology.

Our employees come to work every day with a shared mission: to develop and deliver breakthrough therapies for the hundreds of millions of people in the world affected by rare diseases and other high-need conditions, and who lack effective therapies to live their lives to the fullest. More information at www.shire.com.