37 posts in the category “PatientsLikeMe News”

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


PatientsLikeMe Encourages Sharing of Health Data for Good with 2nd Annual “24 Days of Giving”

Posted December 1st, 2015 by

The Gift of Health Data Can Help Others, and Advance Research

CAMBRIDGE, MASS., December 1, 2015—On this #GivingTuesday, PatientsLikeMe is once again celebrating “the new tradition of generosity” by encouraging people to donate something unusual but vital: their health data. Starting today and continuing for #24DaysofGiving, PatientsLikeMe is asking anyone who is living with a chronic condition to donate their health data after donating to their favorite non-profit.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can see what’s working for patients like them, and what’s not. Health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe also analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

Michael Evers, Executive Vice President of PatientsLikeMe’s Consumer and Technology Group, said that members donated a record amount of health data last year, the first time the campaign was introduced. “Tens of thousands of new and existing members answered the call by contributing treatment evaluations, symptom reports and other health updates. But they didn’t stop on the first day of giving. They shared their data over the course of the entire month, and continued to do so this year. I hope others will join us again so that everyone has the best information to make decisions, and we can continue to bring real-world perspectives to research.”

PatientsLikeMe plans to give back in several ways during the campaign. While it returns study results back to participants as quickly as possible, the company will once again showcase some of the most important research that has benefited from patient data in the last year and beyond. It’s also making a donation of up to $20,000 to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Members use PatientsLikeMe for a range of reasons. For some, tracking their condition is the most vital. Allison talks in this video about living with bipolar II, and how she uses PatientsLikeMe to track her moods. “I haven’t had any episodes in the last five years because I have the data to link all the pieces together. I’m prepared because of PatientsLikeMe.”

Gus, who was recently diagnosed with amyotrophic lateral sclerosis (ALS), contributes his data to make sure others like him have a game plan for living with the condition. “The person who has just been diagnosed isn’t thinking about anything else. Their head is spinning. I want to create a manual so that others can understand what’s working for me and anyone else living with ALS, and make educated decisions to improve their quality of life.“

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

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 non-profits develop more effective products, services, and care. With more than 380,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 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


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


PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 20152016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

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.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Results From PatientsLikeMe Survey Highlight Patient Beliefs About Medical Marijuana

Posted July 14th, 2015 by

Cambridge, MA, July 14, 2015—A new survey of 219 PatientsLikeMe members has found that patients with certain conditions who use medical marijuana believe it is the best available treatment for them, with fewer side effects than other options and few risks. The survey, conducted in June 2015, is among the first to gauge patient perceptions about the benefits and risks of medical marijuana and their level of willingness to recommend its use.

PatientsLikeMe’s Vice President for Advocacy, Policy, and Patient Safety, Sally Okun, RN said that while the number of respondents and conditions represented is limited, the survey and its results come at an important time. “As more people consider using medical marijuana, and more states legalize it, patients need to know what others are experiencing. This survey starts to gather real world data about marijuana as medicine—information that may be useful for patients and their physicians as they explore options and make treatment decisions.”

Half of the survey respondents started using medical marijuana in the last five years, while 25% started to do so in the last two years. Smoking (71%), edibles (55%), and vaporizing (49%) were the most commonly used methods for taking the treatment. The top three conditions represented were multiple sclerosis, fibromyalgia and depression. Key findings are as follows:

Usage and Perceived Side Effects

  • About three quarters (74%) of survey respondents agree that medical marijuana is the best treatment available for their health issue. Another 20% are unsure if there is another option available.
  • 76% report that they use medical marijuana because other treatments weren’t working and/or caused too many side effects. About 21% use it to avoid the side effects of other treatments.
  • When asked about the severity of side effects from using marijuana, 86% of PatientsLikeMe members who report using marijuana indicate the side effects are either “none” or “mild.” The same group says those side effects include dry mouth, increased appetite, and sleepiness.

Perceived Benefits and Risks

  • Survey respondents use medical marijuana for more than one reason, including to treat pain (75%), muscle stiffness or spasms (69%), insomnia (67%) and anxiety (55%). The majority (63%) considered marijuana as a treatment option because they think it is more natural.
  • Most (93%) say that they would recommend medical marijuana to another patient.
  • About 61% say their healthcare provider is supportive of their medical marijuana use, and 60% have a letter of recommendation or prescription.
  • Most patients report a low level of concern (“Not at all” or “A little”) with long-term health risks, such as developing lung cancer (89%), long-term lung damage (86%), or becoming addicted/dependent (96%).
  • One in four patients (26%) report being “Somewhat” or “Very” concerned with legal problems.

Infographics on these and other survey results and the complete list of questions and responses are available at http://news.patientslikeme.com.

David Casarett, M.D., a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of the newly-released book STONED: A Doctor’s Case For Medical Marijuana, worked with PatientsLikeMe on the survey. “This is an important first step in crowdsourced science about medical marijuana. Until we have a lot more large, high-quality clinical trials, patients will need to rely on each other to learn about whether and how medical marijuana might help them.”

Medical marijuana refers to the use of the cannabis plant as well as synthetic THC and cannabinoids as medicine. It is legal in Canada, Belgium, Australia, the Netherlands, the United Kingdom, Spain, and in some U.S. states.

Survey Methodology
Between May 26 and June 10, 2015, PatientsLikeMe invited 1,288 members who added medical marijuana to their profile to respond to the survey; 219 completed it. The mean age of the respondents was 49 years (SD: 12.2); the age range was 19 – 84 years. Most respondents (81%) reported their location as the United States, while 13% are from Canada and the rest are from Australia, Europe, South Africa or Israel. Four respondents did not report their location.

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.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


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 study monitors walking activity in people with MS

Posted April 15th, 2015 by

          

Cambridge, MA, April 15, 2015—PatientsLikeMe today announced results of a novel study conducted with Biogen that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data, which could potentially provide relevant information to their clinicians and to other MS patients. These data are being presented at the 67th American Academy of Neurology’s (AAN) Annual Meeting in Washington, DC April 18-25.

“MS impairs the ability to walk for many people with MS, yet we only assess walking ability in the limited time a patient is in the doctor’s office,” said Richard Rudick, MD, vice president, Value Based Medicine, Biogen. “Consumer devices can measure number of steps, distance walked, and sleep quality on a continuous basis in a person’s home environment. These data could provide potentially important information to supplement office visit exams.”

The study was designed to assess the feasibility of using a consumer wearable device to monitor activity among people with MS in a real-world setting. In it, 248 PatientsLikeMe members were provided with Fitbit One™ activity trackers. Of those who received them, 213 (82%) activated the device with the Fitbit website and authorized PatientsLikeMe to access their data. Two-hundred and three of those who authorized sharing of the data synchronized the device with the service and produced tracking data. Participants synced an average 18.21 days of data over the 21-day study (87% adherence).

Paul Wicks, PhD, Vice President of Innovation at PatientsLikeMe, said that advances in wearable health technology have the potential to shed light on disease characteristics. “PatientsLikeMe is in a unique position to combine self-reported data with objective measurement and help patients and researchers learn more to impact self discovery and research.”

The three-week study had a lasting impact on its participants, who together took a total of 15 million steps and walked 6,820 miles, the distance from Boston to Beijing. “I got positive reinforcement to do more each day, and that really encouraged me,” said Annette Smiling, a PatientsLikeMe member and study participant who had never used a wearable activity tracker before. “The Fitbit also allowed me to track what I was eating and how I was sleeping. I made more positive choices as a result.”

After the study period, participants were surveyed to learn more about their study experiences and about their attitudes toward technology and physical activity tracking. Of the 191 participants who responded to the post-study survey, 88 percent reported the device was easy to use and incorporate into their daily routine; 83 percent agreed that they would continue to use the device after the study; and 68 percent believed that the device would be useful to them in managing their MS. Additional survey data is available at http://news.patientslikeme.com.

With more than 38,000 members, PatientsLikeMe’s MS community is the largest and most active MS research community online.

Study Design Methodology
A total of 248 PatientsLikeMe members living with MS were recruited to participate in a study deploying Fitbit One™ activity trackers. Information on patient demographics and level of self-reported functional disability were captured from the participants’ PatientsLikeMe profiles. Devices were mailed to participants with instructions on activation and authorization of data sharing between the manufacturer and PatientsLikeMe. As part of PatientsLikeMe’s member engagement framework, a live concierge service was available to participants to provide answers to technical and other questions. The study also took full advantage of the PatientsLikeMe platform and health tracking tools to engage participants with their data, and with each other. Study participants were able to track their physical activity levels on the PatientsLikeMe website and connect with each other in the MS discussion forum to talk about changing symptoms, benefits and issues. Data were collected for a period of three weeks, and patients were asked to complete a survey to provide feedback on their experiences with the device.

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