5 posts tagged “partnerships”

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


PatientsLikeMe in the News

Posted March 6th, 2013 by

It’s been a busy couple of weeks at PatientsLikeMe.  Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week.

Paul Wicks at TED2013

PatientsLikeMe Is Building a Self-Learning Healthcare System
(Forbes)

Social Network Could Revolutionize Disease Treatment
(Wired)

PatientsLikeMe Leads Crowdsourcing for Patient Outcomes
(Fierce Biotech IT)

What the NHS Can Learn from Innovative Health Practices Abroad
(The Guardian)

Boehringer Partners with PatientsLikeMe on Rare Disease Community
(PMLive)

Networking Medicine: Patients Take a More Active Role in Science
(The Scientist)

PatientsLikeMe:  Crowdsourcing Healthcare
(AllVoices)

For more PatientsLikeMe media coverage, visit our Press page.


PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson’s Research Through the Patient Voice

Posted December 3rd, 2012 by

TED Fellows Call on Parkinson’s Patients to Help Screen, Monitor Disease Progression

CAMBRIDGE, Mass. — December 3, 2012 —Today, Paul Wicks Ph.D., director of research for PatientsLikeMe, and Max Little, Ph.D., founder of the Parkinson’s Voice Initiative (PVI), kick off a partnership to advance Parkinson’s disease (PD) research through the sound of the patient voice. The two TED Fellows, whose collaboration was recently highlighted on CNN’s “The Next List with Dr. Sanjay Gupta,” are calling on PatientsLikeMe members to record their voices and update their own health profiles to keep track of their disease status.

PatientsLikeMe and PVI have joined forces to further validate Dr. Little’s discovery that the voice can be used as a biomarker for disease progression. Dr. Wicks says, “If Max’s work proves out, this could mean that the cell phones we all carry may be the key to the best biomarker for Parkinson’s disease. The project could also lead the way in lowering the cost and accelerating the discovery of the next generation of treatments. It’s an honor to collaborate with Max and our patients on such transformative work.”

PD is a progressive disorder of the nervous system affecting 6.3 million people worldwide. In a recent TED talk, Dr. Little explains it’s expensive and time consuming to detect the disease early on, and nearly impossible to objectively measure the disease’s progression outside of clinical trials. Through a simple phone call, Dr. Little is testing if the tremors in a voice can be used to diagnose, measure and even assess the effectiveness of PD treatments.

Dr. Little adds, “Voluntary patient registries like the one Jamie Heywood and his team have pioneered are becoming crucial for researchers like me to accelerate and transform discovery. Our work with PatientsLikeMe will help us further validate our research by giving PVI access to more people, and more information, in real time.”

PVI has combined a digital microphone, precise voice analysis software and the latest advances in machine learning to create an unconventional method for automatically screening and monitoring PD. To learn more about the PVI and PatientsLikeMe, visit www.patientslikeme.com/join/pvi.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve 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. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


PatientsLikeMe Teams Up With The National Kidney Foundation Serving New England

Posted May 11th, 2010 by

We are proud to announce a new partnership between PatientsLikeMe and the National Kidney Foundation serving New England.  In the beginning stages of developing the PatientsLikeMe Transplant Community, we worked together with the National Kidney Foundation serving New England to give interested patients an opportunity to share their transplant journey and help shape this new community.  During this beta phase of the community development, kidney recipients alongside lung, heart and liver transplant recipients,  became incredibly engaged and were excited to share their experiences.  Thanks to all those patients who stepped up from the start, as well as those who have since joined our site!  With more than 1,300 members (to date), the Transplants Community is creating new knowledge about patients’ real-world transplantation journeys.  A special thanks also goes out to the National Kidney Foundation serving New England for partnering with us early on to spread the word.

Through this exciting partnership, we will continue to work with the National Kidney Foundation serving New England to find ways for everyone to “give back.”  PatientsLikeMe will be giving back through its PatientsLikeMeInMotionTM program designed to support members participating in offline fundraiser events.  Similarly, we will be joining forces (as an official t-shirt sponsor) with the “Team Mid New England” at the 2010 U.S. Transplant Games to help raise awareness of organ transplantation.  Stay tuned for more details to come.

To kick off the partnership, Molly Cotter (who manages nonprofit development at PatientsLikeMe) sat down with Andrea Savisky, President of the National Kidney Foundation serving New England, to ask a few more questions about their organization, their upcoming events and our partnership.

– – –

2271 (Molly) What is the mission/goal of the National Kidney Foundation?
me-on-bday (Andrea) The National Kidney Foundation, Inc. (NKF) is a voluntary health agency dedicated to preventing kidney diseases, improving the health and well-being of individuals and families affected by these diseases, and increasing the availability of all organs for transplantation. 2010 marks the Foundation’s 60th anniversary, and it’s 20th year as organizer of the U.S. Transplant Games.
2271 (Molly) PatientsLikeMe is proud to be official t‑shirt sponsor for “Team Mid New England” at the 2010 U.S. Transplant Games in Madison, Wisconsin.  How and why do patients get involved? Can any organ transplant patients get involved?
me-on-bday (Andrea) The National Kidney Foundation U.S. Transplant Games® is a national, Olympic-style competition presented every two years. More than just a sporting event, the Games unite thousands of people from across the country, who have been touched by organ donation and transplantation, and offer social and support programs for recipients, donor families and living donors.  As the single largest event promoting organ, eye and tissue donation, the Games serve to foster the health and fitness of its participants, while showcasing the success of transplantation, highlighting the vital need for more organ and tissue donors, and honoring donors and donor families. To receive information on Team Mid New England, email me.Competitive events are open to ALL recipients of life-supporting transplants, as well as to living donors, who are eligible to compete in selected events in their own division.
2271 (Molly) Your 2010 Boston Kidney walk is this upcoming weekend (May 16, 2010).  What is that event all about and how has National Kidney Foundation used those funds raised to help patients?
me-on-bday (Andrea) The National Kidney Foundation’s Kidney Walk is a non-competitive walk focusing on education and prevention of kidney and urinary tract diseases, and awareness of the need for organ donation. The Kidney Walk presents an occasion for dialysis patients, organ transplant recipients, donor families, living donors, the medical and business communities, and the general public to celebrate life and create lasting community advocacy and long-term support for the Foundation’s mission.While raising funds for the National Kidney Foundation’s programs and services, the Kidney Walk provides an opportunity for family, friends and colleagues to participate in an inspiring, community-based event.  To register for the Boston Walk, create a team or to make an online donation and support the mission of the NKF visit our website.

(Note:  If you’re a member of PatientsLikeMe participating in this year’s event, check out how to be sponsored through the PatientsLikeMeInMotionTM program)

2271 (Molly) Some of your U.S. Transplant Games team members were the first to join our Transplants Community (launched in March 2010).   Why were you so willing to work with us to spread the word about this new community?


me-on-bday (Andrea) Transplantation can allow people to live healthy and happy lives. While it is true that some important problems are behind clients once they are transplanted, many new challenges will arise. To stay healthy, one has to adapt and pay attention to the various changes to their health, while planning for and responding to them accordingly.Although the NKF’s “People Like Us” movement brings together transplant recipients, living donors, potential donors, people with chronic kidney disease, donor families and caregivers to be empowered, educated and encouraged to be their own best advocate, we felt that PatientsLikeMe aligned with our vision and empowered patients to take an active role in their health and helping others who are traveling along the same path.
2271 Thanks Andrea.  We’re looking forward to working with the National Kidney Foundation serving New England to help patients share their experiences with their transplant journeys and have a voice in advancing research.

An Interview with UCB’s Peter Verdru

Posted July 13th, 2009 by

Last month, PatientsLikeMe announced our partnership with biopharma leader, UCB, to launch a new community for people with epilepsy.  Below is an interview with UCB’s Vice President of Clinical Research, Peter Verdru, MD.  David S. Williams III, head of PatientsLikeMe business development, recently spoke with Peter about the forthcoming epilepsy community, adverse event reporting, and the partnership in general.

***

581
(David) UCB is known as The Epilepsy Company.  What’s your goal in partnering with PatientsLikeMe to create a new community for people with epilepsy?
pvh-1-3
(Peter) As patient-centric companies, UCB and PatientsLikeMe are both committed to advancing research and improving the lives of people with life-changing conditions.  UCB has a long-term commitment to the epilepsy community – so a partnership with an organization like PatientsLikeMe seemed only natural.

Our goal with this partnership is to provide this community to patients with epilepsy to help them manage their disease. Additionally, the community will generate patient-reported outcomes that may help UCB better understand how patients live with epilepsy and help advance epilepsy care. We anticipate patient-reported outcomes data across treatment groups for seizure severity, number of seizures, symptoms, adverse events, health-related quality of life, and co-morbidities, among other things. Using this knowledge for our future clinical research programs would be a logical next step, leading to an even better understanding of what future treatments could offer or what type of patients would gain additional benefit.

581 (David) This partnership is said to give patients a voice in advancing research.  How so?
pvh-1-3 (Peter) This community will give patients the tools they need to measure their own outcomes. Participants will record their real-time, day-to-day progress in controlling their seizures and achieving their treatment goals, and share that with the community to help other patients, caregivers, researchers and industry learn more about the disease. Tracking their disease over the long-term may help patients and physicians work together to evaluate the impact of their treatment. Eventually, clinical research programs might also benefit from the long-term data these patients are sharing.
581 (David) Through the partnership, both companies will be working to design and deploy a system that allows for adverse event reporting to the FDA.  Why?
pvh-1-3 (Peter) UCB has an ethical and legal responsibility to report adverse events associated with our drugs. If adverse events for any UCB drugs are mentioned on the site, UCB is required to report these directly to the U.S. Food and Drug Administration (FDA). Therefore, we are working to develop and deploy a solution that will allow us to assess and process potential adverse events, report them to the FDA, and capture them in the UCB safety database.
581 (David) What’s the most exciting part of this initiative for UCB?
pvh-1-3 (Peter) We’re excited to be taking a leadership role in the pharmaceutical industry to create a community that will give patients a forum for showing their treatment outcomes. Patients are really the experts about how epilepsy impacts their lives.

UCB is focused on bringing new treatments to patients with severe diseases like epilepsy. We sincerely believe this unique partnership will bring real value to the large community of patients, families and caregivers

581 (David) Thanks Peter!