17 posts tagged “news”

PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award

Posted December 8th, 2016 by

DUBLIN—December 8, 2016—A decade after their work sparked a revolution in patient empowerment and patient-centered medicine, PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations.

Inaugurated in 2000, the Humanitarian Award recognizes and encourages contributions to the fight against Amyotrophic Lateral Sclerosis/Motor Neurone Disease (ALS/MND) and is awarded to those whose work is of international significance for people affected by ALS/MND.

In presenting the award, the Alliance’s citation acknowledged the founding of both the patient network PatientsLikeMe and the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company. “When their brother was diagnosed with ALS at the age of 29, James Allen Heywood and Benjamin Heywood were devastated at his prognosis and at the lack of effective treatments for the disease. They saw firsthand how isolating ALS/MND can be. They took up these challenges as a family and, with family and friends, founded two organizations: ALS TDI, tasked with finding effective treatments for the condition, and PatientsLikeMe, to tackle social isolation and to collect data on what other drugs, interventions or supplements might make a difference to those with ALS/MND.”

Jamie Heywood thanked the association on behalf of his family and PatientsLikeMe members and staff and said the company is ready to lead the next decade of advancements in research and medicine, with and for patients. “We changed the rules by helping patients digitize and share their experience so they could make more informed decisions about how to live with and treat their condition. Now we’re embarking on the next stage of the journey by piloting biomarker discovery in ALS and other conditions. We hope many more patients will join us as we work together to find new answers.”

More information about how to be part of PatientsLikeMe’s upcoming research in ALS/MND is available at www.patientslikeme.com/advanceals.

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 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact                                                                                                                Margot Carlson Delogne
PatientsLikeMe
781.492.1039
mcdelogne@patientslikeme.com

 


PatientsLikeMe Names Marni Hall Senior Vice President

Posted July 11th, 2016 by

Former Director within the FDA to Spearhead Company’s Research and Policy Initiatives

CAMBRIDGE, Mass., July 11, 2016—PatientsLikeMe announced today it has appointed Marni Hall, PhD, MPH, as its new Senior Vice President of Research and Policy. A distinguished research scientist and public policy expert, Hall will develop and direct the strategies and teams focused on expanding the role of real-world evidence in precision medicine, and in the research agendas of PatientsLikeMe and its customers.

Hall joins the company from the U.S. Food and Drug Administration (FDA) where she was most recently Director of Regulatory Science within the Office of Surveillance and Epidemiology (OSE) for the FDA’s Center for Drug Evaluation and Research (CDER). In this role, Hall became an expert at sourcing and analyzing big data sets, including adverse event reports, claims, -omics, and other data useful to risk assessment and risk management activities. She led data management and program operations, as well as research and development efforts to identify, evaluate, and implement new data, tools, and methods to support regulatory decision making. Specifically Hall’s team explored big data sources such as the FDA Adverse Event Reporting Systems (FAERS) and the Sentinel Initiative, and led post-market safety studies and programs using observational data to gain insight into drug safety and drug performance.

PatientsLikeMe CEO Martin Coulter said Hall “will now apply her strategic research and operational expertise to help us work with our members and partners to use patient-reported data in new and innovative ways, so that the patient experience can lead to even more significant developments and discoveries, such as improved outcomes.”

According to Hall, the new opportunity allows her to continue to do research in a scientifically-rigorous and patient-centered setting. “PatientsLikeMe has been a critical force in documenting and analyzing real-life patient experiences and evolving the role of real-world evidence in clinical and public health research. My goal is to extend its impact, so that the patient experience drives a future where healthcare is able to emphasize individual needs and preferences. I’m thrilled to join a company that is so focused on helping people thrive each day, while collecting data essential to this emerging field,” Hall said.

A research scientist by training, Hall has spent nearly two decades at the intersection of science and policy. She started her career studying toxicology and molecular epidemiology at Columbia University. After serving as Program Director in the Public Health Group of External Medical Affairs at Pfizer, Hall joined the FDA’s Office of Planning and Informatics (OPI) in 2008 as a Principal Analyst. In this role, she initiated and led the development of CDER’s data standards plan. She was appointed Director of Regulatory Science in 2011.

Hall holds bachelor of science degrees in chemistry and in society, technology, and policy from Worcester Polytechnic Institute. She also holds a master’s degree in public health from Columbia University’s Mailman School of Public Health as well as a master of science degree in biochemistry and a PhD in toxicology from Columbia University’s Graduate School of Arts and Sciences.

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 #dataforgood: 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.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
+1.617.548.1375


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


RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance

Posted December 8th, 2015 by

Patient Network to Work with the National Quality Forum to Ensure Patients Drive Healthcare Value  

CAMBRIDGE, MA., December 8, 2015PatientsLikeMe has been awarded a $900,000 grant from the Robert Wood Johnson Foundation (RWJF) to help jumpstart changes that will amplify the patient voice in the measurement of healthcare performance.

A portion of the grant funds a collaboration between PatientsLikeMe and the National Quality Forum (NQF) to develop, test and facilitate the broader use of patient-reported outcome measures (PROMs) to assess patient-reported health status. While PROMs have been used in clinical research, they are rarely used in routine clinical care to assess provider performance. In such settings, performance is primarily assessed by what was done to the patient (using process measures) and what happened to the patient (using clinical outcome measures), but not always by what may be most important to the patient.

The grant comes as value-based purchasing is gaining ground in both the public and private sectors, with the Centers for Medicare & Medicaid Services (CMS) setting aggressive targets for linking performance related to quality, value and patient-centered care to payment. “Measuring what is relevant, useful and actionable for patients has never been more important,” said PatientsLikeMe Co-founder and President Ben Heywood. “This initiative will help quantify the patient experience at the clinical level, so that real patient outcomes can start to prompt changes in behavior, help tailor care, and improve reimbursement. With it, we’ll start to move the whole system toward more patient-centered care.”

NQF is a not-for-profit, nonpartisan, multi-stakeholder, membership-based organization that works to help advance improvements in healthcare. It evaluates, endorses, and selects measures of quality, safety and cost for accountability. The collaboration with PatientsLikeMe is one of several that are part of NQF’s new Measure Incubator, an innovative effort that holds the potential to facilitate measure development and testing more efficiently through collaboration and partnership.

NQF’s Chief Scientific Officer, Helen Burstin, MD, MPH, sees the collaboration with PatientsLikeMe as the answer to an urgent need for new measures that can improve health and healthcare outcomes.

We have an abundance of clinical measures, but we need to better incorporate the voice of the patient into performance measurement,” said Dr. Burstin. “We must be able to accurately measure and understand the patient’s day-to-day experience living with pain and fatigue as well as how they are functioning with routine activities to get the full picture. PatientsLikeMe’s inherent focus on patients will move us closer to having the patient voice be the driver and definer of health care value.”

Creating measures that matter to patients became easier in 2013 when RWJF gave PatientsLikeMe a grant to create the Open Research Exchange (ORE), an open-participation platform that allows researchers to connect with PatientsLikeMe’s 380,000 members to create, test and validate new measures. The collaboration with NQF will initially use the ORE platform to ask patients to prioritize measures, then PatientsLikeMe will develop and test them. This process will ensure that when implemented in clinical care settings, the measures broadly show a patient population’s progress and reflect health outcomes that are important to patients that can then be used to assess an organization’s performance and ultimately to determine reimbursement.

About Patient-Reported Outcomes Tools & Performance Measures

Patient-reported outcomes (PROs) are defined as any report of the status of a patient’s (or person’s) health condition, health behavior, or experience with healthcare that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else. Various tools such as questionnaires, scales, or single-item measures that enable researchers, administrators, clinicians and others to assess patient-reported health status for physical, mental, and social well-being are referred to as PRO measures (PROMs). PROMs have been commonly used in clinical research because they are based on patient input, and can help ensure that the treatments developed actually help people feel better and improve symptoms or function. Their application in the clinical care setting is limited, but growing interest among various stakeholders is moving PROMs into more routine use for performance measurement. An example of this is the widely used Patient Health Questionnaire 9 (PHQ-9) that screens and monitors the severity of depression. In a clinical setting, PROMs can help monitor patient progress over time at the individual and population level and support shared decision making. A PRO performance measure (PRO-PM) is based on aggregated patient-reported data and is used to assess quality of care for accountable entities, such as hospitals, physician practices or accountable care organizations (ACOs). NQF endorses PRO-PMs for purposes of performance improvement and accountability.

Contact
PatientsLikeMe
Katherine Bragg
kbragg@patientslikeme.com
617.548.1375


The American College of Cardiology and PatientsLikeMe to Bring Patient Focus to Diabetes Research and Care

Posted November 9th, 2015 by

Real-world, clinical insights and patient engagement central to improving health outcomes 

WASHINGTON and CAMBRIDGE, MASS., November 9, 2015—The American College of Cardiology (ACC) and PatientsLikeMe have launched a partnership to explore innovative ways to make real-world patient feedback and experience more central to diabetes research and care. Focused on the ACC’s Diabetes Collaborative Registry®, the partnership will encourage people living with diabetes to offer perspectives to enhance and accelerate the registry’s research and development agenda. The announcement was made during American Diabetes Month and at the start of the week marking the International Diabetes Federation’s World Diabetes Day.

The Diabetes Collaborative Registry is the first global, cross-specialty clinical diabetes registry designed to track and improve the quality of diabetes and cardiometabolic care delivered to patients across the primary and specialty care continuum. The registry’s founding industry sponsor, AstraZeneca, is also a PatientsLikeMe partner and shares the goal to bring the patient voice into the center of scientific discovery and development.

ACC Executive Vice President of Science, Education, Quality and Publishing William J. Oetgen, MD, MBA, FACC, FACP said the collaboration will bring PatientsLikeMe’s expertise and engagement experience to the registry. “The Diabetes Collaborative Registry is focused on transforming the quality of clinical care, prevention and treatment and driving improvements in quality of life and outcomes for people around the world. We want to ensure that patients and providers get the most from the registry and from access to their health data. Our partnership with PatientsLikeMe makes the patient voice central to science, and will enable us to explore ways to effectively engage patients and work with them to define potential opportunities to enhance the registry’s impact,” Oetgen said.

The collaboration’s first step calls for the ACC and PatientsLikeMe to reach out to people living with diabetes to identify priorities for the registry’s research and program development agenda. Practices participating in the Diabetes Collaborative Registry will be able to offer their patients access to the PatientsLikeMe website so they can become part of the online patient community, which is open to any patient living with diabetes. Nearly 20,000 people already use the website to connect in forums and to track and share their experiences living with diabetes, including reporting the severity of symptoms such as fatigue, pain and depressed mood, quality of life, and the effectiveness of various treatments or non-drug interventions.

As part of the collaboration, Sally Okun, Vice President of Patient Advocacy, Policy and Safety at PatientsLikeMe, will hold a position on the Diabetes Collaborative Registry Stakeholder Advisory Panel, which provides guidance and recommendations to the registry’s member governance committees. Okun said the collaboration has the potential to reach millions of patients given 1 in 3 Americans is expected to develop diabetes during their lifetime. “We’re excited to be partnering with the ACC given their deep experience with registries and unparalleled partner support. We expect that patient-generated data and data from clinical encounters will help create a vision of health for all people living with diabetes—a vision focused on improving outcomes that matter most to patients.”

PatientsLikeMe welcomes anyone living with type 1 or type 2 diabetes to join patientslikeme.com for free at www.patientslikeme.com.

About Diabetes
Nearly 30 million children and adults in the United States have diabetes, and 2 out of 3 people with diabetes die from heart attacks or stroke. Type 1 diabetes mellitus, usually diagnosed in children and young adults, can occur at any age when the pancreas does not produce insulin, a hormone needed to control the body’s blood sugar levels. It requires daily monitoring of blood glucose (sugar), insulin therapy, diet modification and exercise. Type 2 diabetes mellitus is characterized by insulin resistance or desensitization and increased blood glucose levels. It is a chronic disease that can develop gradually over time and can be linked to both environmental factors and heredity.

The Diabetes Collaborative Registry® is the first, real-world, interdisciplinary, quality improvement-driven, clinical data registry aimed at tracking and improving the quality of diabetes and cardiometabolic care across the primary and specialty care continuum. Led by the American College of Cardiology, in partnership with the American Diabetes Association, the American College of Physicians, the American Association of Clinical Endocrinologists and the Joslin Diabetes Center, the Diabetes Collaborative Registry is a big data collaboration that allows for a longitudinal study of diabetes across all stages of the disease—including presentation, progression, management and outcomes—even as patients receive treatment from multidisciplinary care teams. The mission of the Diabetes Collaborative Registry is to generate data-driven, evidence-based insights and solutions that will transform the future of personalized, high quality care and outcomes for people across the globe. The registry is sponsored by AstraZeneca and Boehringer Ingelheim Pharmaceuticals, Inc. For more information, visit TheDiabetesRegistry.org.

The American College of Cardiology is a 49,000-member medical society that serves as the professional home for the entire cardiovascular care team. The mission of the College is to transform cardiovascular care and to improve heart health. The ACC leads in the formation of health policy, clinical standards and practice guidelines. The College operates national registries to measure and improve care. It also provides professional medical education, disseminates cardiovascular research and bestows credentials upon cardiovascular specialists who meet stringent qualifications. For more information, visit acc.org.

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 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


ORE Researcher Series: McMaster University

Posted July 20th, 2015 by

Last month, you met ORE researcher Tamara Kear, PhD., R.N., CNS, CNN, and you listened to her talk about her research on hypertension, one of the factors that can lead to a person developing kidney disease. Today, we’re introducing McMaster University Professor Gordon Guyatt and students Melody Ren and Reza Mirzaie. The question they are asking is “how are patients currently receiving bad news from a medical professional, and are the guidelines doctors have on delivering bad news actually correct?” Below, listen to the three researchers talk about their work and how the ORE platform and PatientsLikeMe made their research possible.

What exactly is the ORE? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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Sally Okun explains the new research collaboration with the FDA

Posted June 16th, 2015 by

Yesterday, we announced a new research collaboration with the U.S. Food and Drug Administration (FDA) that will explore how patient-reported data can lead to new insights about drug safety. It’s the first time the FDA will analyze patient-generated data for pharmacovigilence (aka drug safety).

But we’re no strangers to drug safety. Check out some of the previous work the community has helped to drive:

To learn more about this new (and unprecedented) collaboration, we talked to our very own Sally Okun, Vice President of Advocacy, Policy and Patient Safety.

What will this collaboration do?
Patients’ lives and well-being often depend upon medical products approved and regulated by the FDA. But most of the information we see on safety labels comes from clinical trials, which aren’t typically representative of the actual populations of patients who will take the medication. Working with us, the FDA will be able to see the real-world impact of taking medications over time, which can help identify benefits and risks earlier. The FDA isn’t just talking about patient-centricity; they are partnering with us to work directly with patients, and give them a collective voice as part of the FDA’s surveillance system.

How does the FDA normally hear about side effects?
Right now the FDA uses a voluntary reporting system consisting of individual case safety reports, the majority of which are submitted by healthcare professionals and patients to drug product manufacturers, who then are required to report them to the FDA. Our data are different in that the information is generated by patients themselves, and provide real-time insights about what its like to use medical products over time, like tolerability of the drug and factors that may influence taking the drug as prescribed.

When did PatientsLikeMe’s start gathering information about side effects and adverse events?
We’ve actually been collecting information about patients’ experiences with treatments, including patient-attributed side effects, since we launched the website in 2006. In 2008 we took steps to formalize adverse event reporting by developing a customized version of the FDA’s MedWatch tool for use in a pilot project with our MS community. The pilot set us on a path to develop our future drug safety functionality. By 2009 we had created a fully integrated, standards-based drug safety platform, the first on social media. It enabled industry partners to meet their regulatory obligations.

What’s the future?
It’s pretty exciting! The patient experience can more deeply inform the way medications are regulated. And patient-reported data can ultimately have a greater impact on the way that drugs are developed. This collaboration can lead to all of that.

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PatientsLikeMe and the FDA Sign Research Collaboration Agreement

Posted June 15th, 2015 by

WASHINGTON D.C., June 15, 2015—PatientsLikeMe and the U.S. Food and Drug Administration (FDA) have signed a research collaboration agreement to determine how patient-reported data can give new insights into drug safety. Under the collaboration, PatientsLikeMe and the FDA will systematically explore the potential of patient-generated data to inform regulatory review activities related to risk assessment and risk management. The announcement was made at the start of the Drug Information Association’s (DIA) annual meeting in Washington D.C.

PatientsLikeMe Co-Founder and President Ben Heywood said the agreement is an unprecedented step toward enhancing post-market surveillance and informing regulatory science. “Most clinical trials only represent the experience of several hundred or at most several thousand patients, making it impossible to anticipate all the potential side effects of drugs in the real world. Patient-generated data give a more complete picture about a drug’s safety by providing a window into patients’ lives and healthcare experiences over time. We’re very encouraged by the FDA’s action to evaluate newer sources of data to help identify benefits and risks earlier.”

The cornerstone of the FDA’s post-approval drug safety surveillance is a spontaneous reporting system consisting of individual case safety reports. Reporting adverse events to the FDA is mandatory for drug product manufacturers but voluntary for healthcare professionals and patients. The majority of these individual case safety reports are submitted by healthcare professionals and patients to drug product manufacturers, who then have regulatory requirements to report them to the FDA. The PatientsLikeMe data are generated in a different context by patients themselves, and provide important real-time insights into the nuances inherent in patients’ experiences over time, including drug tolerance, adherence and quality of life.

PatientsLikeMe is the largest and most active patient network online, with 350,000 members reporting on their real-world experiences with more than 2,500 conditions. The company’s drug safety initiatives began in 2008 with a pilot program that allowed patients living with Multiple Sclerosis (MS) to report adverse events directly to the FDA. One year later the company launched the first drug safety platform on social media, enabling industry partners to meet their regulatory obligations. In all, PatientsLikeMe has collected more than 110,000 adverse event reports on 1,000 different medications, data that the FDA will now be able to access and analyze as a supplement to traditional sources, including FAERS.

While this is the first time that PatientsLikeMe has formally worked with the FDA, the collaboration adds to a foundation the company has built as an active participant in the regulatory science process. PatientsLikeMe has worked with, provided counsel to and co-authored discussion papers with a range of government groups, including the Institute of Medicine, the National Institute of Health, the Centers for Disease Control and Prevention and the U.S. Department of Health and Human Services, as well as nonprofit organizations such as the Patient Centered Outcomes Research Institute (PCORI).

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About the FDA
The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
(781) 492-1039


PatientsLikeMe and Partners HealthCare Collaborate to Improve Patient Outcomes

Posted May 26th, 2015 by

CAMBRIDGE, MA., May 26, 2015 – PatientsLikeMe and Partners HealthCare announced today that they are working together to give Partners HealthCare patients access to tools and information that can help improve decision making with their clinical teams and enhance health outcomes.

PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers said the agreement is the first to provide access to the website from within a provider’s patient portal. “We’re excited to work with such an esteemed health system to help patients and their care teams have a more complete understanding of patients’ whole health experience, and to support shared decision making about next steps.”

Partners Population Health Management Associate Medical Director Adam Licurse, MD, MHS, who is a leader in population health patient engagement efforts at Partners, added the agreement is a key building block towards the healthcare system’s vision for better involving patients in their care. “We know that as patients become more engaged in their care, they have better care experiences, make more informed decisions based on their goals, and in some cases can actually receive higher value care at the end of the day. Peer mentorship, patient self-management, and patient education are all critical pieces to that puzzle. We believe PatientsLikeMe’s online patient community provides a meaningful solution to help meet these needs.”

As part of the agreement, the organizations:

  • Have provided access to PatientsLikeMe from Partners Patient Gateway, an online tool for patients to learn more about their condition and communicate with their doctors’ offices.
  • Will introduce a new “PatientsLikeMe 101” training series to guide Partners HealthCare clinical teams in helping patients and caregivers get the most out of PatientsLikeMe’s tools and support network.
  • Plan to include patients’ use of the website and its tools at the point of care in select Partners HealthCare clinical care sites and practices. Partners HealthCare clinicians are currently outlining several projects designed to understand how the use of patient-generated health data at the point of care can impact health outcomes, patient engagement, patient empowerment, care coordination and patient satisfaction. The projects are expected to kick off this year.

Partners HealthCare patients are welcome to voluntarily join PatientsLikeMe at http://www.patientslikeme.com or through their Partners Patient Gateway account.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Partners HealthCare
Partners HealthCare is an integrated health care system, founded by Brigham and Women’s Hospital and Massachusetts General Hospital, that offers patients a continuum of coordinated and high-quality care. In addition to its two academic medical centers, the Partners system includes community and specialty hospitals, a managed care organization, a physician network, community health centers, home health and long-term care services, and other health care entities. Partners HealthCare is committed to patient care, research, teaching, and service to the community. Partners is one of the nation’s leading biomedical research organizations and is a principal teaching affiliate of Harvard Medical School. Partners HealthCare is a non-profit organization.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
(781) 492-1039


PatientsLikeMe Appoints Jason Johnson Executive Vice President and Head of R&D

Posted May 18th, 2015 by

CAMBRIDGE, MA, May 18, 2015—PatientsLikeMe today announced it has appointed Jason Johnson, PhD, as Executive Vice President and head of research and development (R&D). Johnson leads the company’s research, data science, and informatics teams, which focus on analyzing and merging patient-reported and other data types to develop models of disease progression and generate new insights about disease, treatments, and health. Johnson reports directly to CEO Martin Coulter.

“Jason comes to us at a time when the industry is putting patients at the center of healthcare, and using more patient-reported data to guide business and operational decisions,” said Coulter. “Our research and informatics teams bring the data to life by extracting insight and meaning about the patient experience, and helping our partners see which medicines and therapeutic approaches will benefit patients the most. The combination of Jason’s leadership and our scientifically-validated data will be a powerful source of insight to guide discovery, development, and treatment decision making.”

A renowned computational biologist and information science strategist, Johnson comes to PatientsLikeMe after spending 14 years at Merck, most recently as Associate Vice President for Scientific Informatics. In this role, Jason helped build Merck’s informatics and analytics capabilities and was responsible for applied math and modeling, scientific computing and research software engineering. Johnson held various leadership roles during his tenure at Merck within R&D and information technology (IT), and led teams responsible for early clinical development and discovery research IT, computational biology, molecular profiling, and genomics research. Prior to joining Merck, Jason worked at Rosetta Inpharmatics, a biotechnology company in Seattle, and at Pfizer.

“PatientsLikeMe’s ability to bring patients together to share data and insights can transform the way healthcare is practiced and substantially increase value to patients,“ said Johnson. “I’m excited to be working on healthcare informatics from the perspective of the patient. I believe that amassing and analyzing relevant health and medical information from many people with similar experiences and patterns of data can deliver research insights that improve healthcare decision making and patient health.”

Johnson is the author of more than 35 peer-reviewed research publications. He holds bachelor’s degrees in physics and philosophy from Stanford University, a master’s degree in physics from the University of Cambridge in the United Kingdom, and a PhD in biophysics from Harvard University.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com


PatientsLikeMe Names Michael Evers New Executive Vice President of Consumer and Technology Group

Posted May 11th, 2015 by

CAMBRIDGE, MA., May 11, 2015—PatientsLikeMe today announced it has named Michael Evers the head of its newly-formed consumer and technology group. In this role, Evers will focus on creating value for patients and directing the company’s marketing, engineering, user experience and design, product management, patient advocacy and government compliance teams. He reports directly to CEO Martin Coulter.

Evers joined PatientsLikeMe as Executive Vice President of Marketing in 2012. Since then he has tripled the company’s member base to 325,000 members and significantly increased engagement on the site. He has also developed and expanded the company’s marketing capability and created the strategy and infrastructure for a strong partner network that includes Walgreens, Aetna and numerous other organizations and nonprofits. The new role is a promotion and expands Evers’ responsibilities to include design and development of the company’s website, which is widely lauded as a leading resource for patients to track their health, connect with others and contribute health data for research.

“In the last three years, Michael has been instrumental in driving our member growth and business expansion. His leadership and deep consumer background will ensure that we continue to develop our company and services in ways that helps our members improve their health, and healthspan,” said Coulter.

Before joining PatientsLikeMe, Evers was President of BroadMap, a provider of industry-leading geographic data products. Evers’s 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. He has also held senior marketing positions at Motorola and AOL Time Warner.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com


PatientsLikeMe and AstraZeneca announce global research collaboration

Posted April 13th, 2015 by

          

Five-year agreement focused on improving health outcomes for patients across main therapy areas

CAMBRIDGE, MA, April 13, 2015—In a major step forward to make patient-centric evidence a cornerstone of scientific discovery and development, PatientsLikeMe and AstraZeneca (NYSE: AZN) have signed a five-year agreement to provide access to PatientsLikeMe’s global network in support of AstraZeneca’s patient-driven research initiatives.

AstraZeneca will use patient-reported data from PatientsLikeMe to shape future medicine development and help improve outcomes across its main therapeutic areas, with an initial focus on respiratory disease, lupus, diabetes and oncology.

“Understanding what patients are experiencing every day and how they define the value of their treatments are fundamental to our ability to push the boundaries of science in developing the next-generation of medicines,” said Briggs Morrison, EVP Global Medicines Development, AstraZeneca. “Our partnership with PatientsLikeMe will help us to harness the important perspectives of patients through their advanced technology and real-world, real-time evidence to support our research and development programs.”

The agreement is the latest to embrace PatientsLikeMe’s global network, which delivers a unique depth and breadth of data about the patient. Ed Godber, Executive Vice President of Life Sciences Ventures, said the wide-ranging collaboration with AstraZeneca also marks a significant step in realizing PatientsLikeMe’s mission to make patients true partners in science.

“It’s rare to find a partner so committed to listening to and integrating the patient voice into the heart of its scientific development and operations. We’re excited to work together to transform the discovery and healthcare model and develop products and services tailored to what patients experience and truly need,” Godber said.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About AstraZeneca
AstraZeneca is a global, innovation-driven biopharmaceutical business that focuses on the discovery, development and commercialisation of prescription medicines, primarily for the treatment of cardiovascular, metabolic, respiratory, inflammation, autoimmune, oncology, infection and neuroscience diseases. AstraZeneca operates in over 100 countries and its innovative medicines are used by millions of patients worldwide. For more information please visit: astrazeneca.com.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com


PatientsLikeMe Appoints Ed Godber as First Executive Vice President of Life Sciences Ventures

Posted March 10th, 2015 by

Industry Leader to Head up Patient-Focused Initiatives for Life Sciences Customers

CAMBRIDGE, MA., March 10, 2015— PatientsLikeMe today announced it has appointed Ed Godber as Executive Vice President of Life Sciences Ventures. In this newly created position, Ed is responsible for managing PatientsLikeMe’s life sciences business and bringing the patient agenda to the forefront of partners’ development and delivery operations. He reports directly to PatientsLikeMe CEO Martin Coulter.

“Our pharma, biotech and healthcare customers are asking us to guide and support their transition to a more patient-centric world, and to integrate the patient voice in all they do,” said Coulter. “Ed brings the perfect blend of skills to this mission. His patient-centered view and senior level industry, payer and healthcare experience will help our customers create even greater value for their patients.”

Ed has been advising and managing operations in numerous life sciences and healthcare companies for more than 20 years. Previously, he was the Chief Executive Officer of the London-based Health Labs Advisory Boards, where he was a strategic advisor to pharma, biotech, venture capital and nonprofit organizations. He also spent nearly five years at GlaxoSmithKline (GSK) as Senior Vice President, heading up access to medicines as part of the European Executive Team and exploring evidence innovation within the research and development division. In that position, he also co-founded a multi-million dollar external scientific collaboration on real world data.

Godber began his career in public health, strategic commissioning and policy research in the UK’s National Health Service (NHS) and has advised a wide range of transformational ventures, including the Bill & Melinda Gates Foundation and the Chatham House Working Group on Anti-Bacterial Resistance.

“I’ve long admired PatientsLikeMe for sparking a revolution in healthcare with its community- and science-based platform for patients,” Godber said. “As a patient who has benefitted so much from the way in which PatientsLikeMe works, I’m excited and honored to be part of a team that is helping life science companies realize their deep-seated desire to enable the patient voice to transform the discovery and development process.”

Godber is based in London. He holds a master’s degree in health economics from the University of York and a master’s degree in business administration from the London Business School.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


PatientsLikeMe adds information about patient experiences with medications to Walgreens Pharmacy website

Posted February 18th, 2015 by

               

Newly-enhanced health dashboard now includes access to patient-reported data on side effects for 5000+ medications

CAMBRIDGE, MA., February 18, 2015PatientsLikeMe is working with Walgreens to help make it easier for people to understand how the medications they take may affect them. Now, anyone researching a medication or filling a prescription on Walgreens.com can access a simple snapshot that shows how their prescribed medication has impacted other patients on the therapy, including medication side effects, as reported by PatientsLikeMe members.

PatientsLikeMe is a free, online network where patients living with chronic conditions can track their health, connect with others and contribute data for research. More than 300,000 individuals have joined PatientsLikeMe and shared their own experiences with various treatments. The PatientsLikeMe-sourced information is updated daily with new patient reports and covers many medications available at Walgreens pharmacies.

PatientsLikeMe is the first featured external contributor to the new Walgreens Health Dashboard, a secure and private personalized health information offering. Walgreens can access PatientsLikeMe content to share information that may be of interest to Walgreens patients based on individual medication needs.

 

This example shows patients’ experience with Gabapentin, a medication often used to treat pain in conditions like fibromyalgia.

 

“Leveraging patient perspectives and experiences through Walgreens Health Dashboard provides our patients with helpful insight into their medications and overall therapy management,” said Walgreens Divisional Vice President of Digital Health, Adam Pellegrini. “Our collaboration with PatientsLikeMe underscores the power of social support and shared experiences on a wellness journey.”

The agreement also marks the first time PatientsLikeMe has integrated its data on another company’s website.

“We want to help patients wherever they are, so they can be better informed about the treatments they’re taking and make more informed health decisions,” said PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers. “We’re thrilled to be working with the nation’s largest drugstore chain. Our work with Walgreens will give their patients important insights from people taking both simple and complex medications. It can also help enrich our treatment data should Walgreens patients decide to join our community.”

To access patient-reported data on medication side effects, Walgreens patients can visit www.walgreens.com. Walgreens patients interested in connecting with other patients managing similar conditions and sharing their medication experiences through PatientsLikeMe can visit http://www.patientslikeme.com/join/walgreens.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Walgreens
Walgreens (www.walgreens.com), the nation’s largest drugstore chain, constitutes the Retail Pharmacy USA Division of Walgreens Boots Alliance, Inc. (Nasdaq: WBA), the first global pharmacy-led, health and wellbeing enterprise. More than 8 million customers interact with Walgreens each day in communities across America, using the most convenient, multichannel access to consumer goods and services and trusted, cost-effective pharmacy, health and wellness services and advice. Walgreens operates 8,229 drugstores with a presence in all 50 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands. Walgreens digital business includes Walgreens.com, drugstore.com, Beauty.com, SkinStore.com and VisionDirect.com. Walgreens also manages more than 400 Healthcare Clinic and provider practice locations around the country.

Contacts
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com

Markeisha Marshall
(847) 315-2923
Markeisha.marshall@walgreens.com