2 posts tagged “patient outcomes”

PatientsLikeMe and M2Gen Announce Partnership and Plans for Landmark Cancer Experience Study

Posted March 8th, 2016 by

 

CAMBRIDGE, Mass. & TAMPA, Fla., March 8, 2016—Patient network PatientsLikeMe® and informatics solutions provider M2Gen® are collaborating to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.

The partnership aims to advance cancer research by combining real-world, patient-reported outcomes shared by members of PatientsLikeMe with the molecular and clinical data shared by patients enrolled in the Total Cancer Care® program at Moffitt Cancer Center and The Ohio State University Comprehensive Cancer Center –

Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James). The combined dataset will give researchers a broader, longitudinal view of the many factors that affect patient outcomes.

The collaboration’s initial study is expected to kick off within the next several months and to focus on lung cancer. Researchers will analyze and explore the typically distinct forms of data to generate new insights into the patient experience and value of treatment plans for those undergoing care. The study is funded by PatientsLikeMe partners AstraZeneca and Genentech, a member of the Roche Group.

“As we continue to expand our real-world measurement system, we want to ensure we’re giving patients access to all of the information needed to help guide their care decisions,“ said PatientsLikeMe CEO Martin Coulter. “By integrating data from multiple sources, we’ll be able to get, and give, a more comprehensive picture of disease and patients’ experience managing it.”

Moffitt Cancer Center and OSUCCC – James are founding members in the Oncology Research Information Exchange Network (ORIEN), a unique research partnership among the country’s top cancer centers. M2Gen guides ORIEN’s operations and strategy. Dr. William (Bill) S. Dalton, Founder and CEO of M2Gen, said the collaboration will help guide how cancer care evolves.

“This partnership brings together everything we need to better understand the patient, identify unmet needs, and use that insight to develop better technology, treatments and care protocols,” said Dalton. “We ultimately hope it provides the tools and information patients and their doctors will use to make treatment decisions that are tuned to patients’ life goals and treatment preferences.”

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About M2Gen
M2Gen is Moffitt Cancer Center’s wholly owned, for-profit, informatics solution subsidiary advancing personalized medicine by using high quality tissue, clinical data and molecular technology to accelerate the discovery and delivery of personalized medicine. Using a rapid learning approach, the goal of M2Gen is to accelerate the science of precision medicine by creating evidence and knowledge-based solutions that identify a patient’s susceptibility to disease, predict how the patient will respond to a particular drug, and match patients to the best therapies for an optimal treatment outcome. M2Gen, along with Moffitt and partnering community hospitals, has created a large, cancer-focused biorepository linked to clinical and molecular data. For more information visit www.m2gen.com

About the Oncology Research Information Exchange Network (ORIEN)
The Oncology Research Information Exchange Network (ORIEN) is a unique research partnership among North America’s top cancer centers that recognize collaboration and access to data are the keys to cancer discovery. Through ORIEN, founders Moffitt Cancer Center in Tampa and The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute in Columbus leverage multiple data sources and match patients to targeted treatments. More information is at http://www.oriencancer.org/.

About the Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute
The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute strives to create a cancer-free world by integrating scientific research with excellence in education and patient-centered care, a strategy that leads to better methods of prevention, detection and treatment. Ohio State is one of only 45 National Cancer Institute-designated Comprehensive Cancer Centers and one of only four centers funded by the NCI to conduct both phase I and phase II clinical trials on novel anticancer drugs. As the cancer program’s 306-bed adult patient-care component, The James is one of the top cancer hospitals in the nation as ranked by U.S. News & World Report and has achieved Magnet designation, the highest honor an organization can receive for quality patient care and professional nursing practice. At 21 floors with more than 1.1 million square feet, The James is a transformational facility that fosters collaboration and integration of cancer research and clinical cancer care. For more information, visit www.cancer.osu.edu.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Your data doing good: The POEM Study

Posted December 4th, 2015 by

When you share your health data, we all learn

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Here’s a great example: the POEM Study, which showed that the secret ingredient to managing your health may just be patients like you.

PatientsLikeMe was founded on a simple idea: when patients connect with each other and share their experiences, they can learn how to better manage and treat their disease and improve their outcomes. Over the years, members proved this is possible time and again. But would a rigorously-conducted scientific study confirm what we already thought to be true?

Our partner UCB wanted to work with us to find out. They helped to build and grow the epilepsy community on PatientsLikeMe back in 2010.  At the time, they were thinking about patient services that you might not expect a pharmaceutical company to focus on, things like information, advocacy, and education. In 2011, we worked together on a pilot study with people living with epilepsy. We learned that people who joined PatientsLikeMe felt that they better understood their own seizures. They even reported improved adherence to their medications. The results also underscored a significant piece of understanding about this particular population; prior to joining the site, one out of three epilepsy patients had never met another person living with this condition.

As the community grew, so did our understanding of what matters to these patients. Then in 2013, we found another partner who wanted to help create a new study focused on an even more specific group: veterans living with epilepsy, an often isolated and stigmatized part of the community. The question we were trying to answer was this: could a network like PatientsLikeMe, with its epilepsy-specific tools and resources, help those who found out about the site from their doctors improve their ability and confidence to manage their condition?

Along with UCB we collaborated with the VA Epilepsy Centers of Excellence in a six-week study of veterans using PatientsLikeMe. The evidence showed that by sharing their health data and connecting with each other online, these patients’ outcomes improved. The nearly 100 veterans who took part in the study grew more confident that they could take care of themselves, and did a better job of managing their care. The results were published this year in Neurology, a leading scientific journal in the field.

It all started with one partner, one community and a whole lot of data sharing. And now, five years later, there are nearly 10,000 epilepsy patients using PatientsLikeMe and helping one another to live better every day. You are the secret ingredient to helping others better manage their health. Thank goodness it’s not a secret anymore.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.