41 results for “innovation”

PatientsLikeMe at the NHS Innovations Expo

Posted March 21st, 2011 by

expo2011_logo-straplineIf you’ve ever tuned in to one of our podcasts or had a chance to view one of our videos, there’s a certain characteristic you might have noticed about me.  I’m British.  Very British indeed. During the course of my academic research career, I spent 6 years working alongside neurologists, psychiatrists, and a multidisciplinary team of nurses, speech and language therapists, physios, and occupational therapists at King’s College Hospital and the Maudsley Psychiatric Hospital in South London.  As you probably know, the United Kingdom (UK) has a very different health system to the United States (U.S.). The National Health Service (NHS), formed in 1948 as part of post-war reconstruction, has three core principles:  1) To meet the needs of everyone, 2) to be free at the point of delivery, and 3) to be based on clinical need rather than ability to pay.  Against an aging population and rising medical costs, however, the NHS needs to continually innovate in order to remain cost effective, and the UK’s coalition government has set an ambitious target to maintain quality of care while cutting £20 billion from the NHS budget (approximately $32 billion).

Earlier this month, PatientsLikeMe was invited to participate in the NHS’ second Innovations Expo in East London, a 2-day expo featuring a vast exhibit hall of innovations from the private and public sectors, as well as a packed schedule of seminars and platform presentations from Andrew Lansley (Secretary of State for Health) and Sir David Nicholson (Chief Executive of the NHS).  They spoke of plans for radical reform of the NHS, with more power being transferred from central government to General Practitioners (GPs, equivalent to U.S. Primary Care Physicians, PCPs) and much more of an emphasis on something that ties in with our core value: “Patients First.”

We were fortunate to have a “Masterclass Theatre,” where, on behalf of PatientsLikeMe, I was able to share some of our experiences in the U.S. and provide examples of successes we’ve had that might translate well to the NHS.  We also gave a couple of more intimate seminars which candidly discussed 5 lessons we had learned from 100,000 patients over the past five years.

In addition to PatientsLikeMe, there were a number of interesting innovations at the event, including a company that does what we do but for doctors (Doctors.net.uk), a patient health record that links into the NHS’ medical notes system and allows clinicians to help manage patients with rare conditions (PatientsKnowBest, founded by a doctor and chronic condition patient), and an information portal that helps provides clinicians with the best evidence to help support their decision making (NHS Evidence). We also attended the launch of an inspiring white paper from thinktank The Young Foundation entitled “Connect: Patients and the Power of Data.”  Sensible, compelling, and highly readable, the report starts off with a quote from the coalition government’s white paper on health that we might just make into a plaque: “Information is a health and care service in its own right: it must be freely available to all those who need it.” You can read the report for free here.

For PatientsLikeMe, the UK and the NHS in particular offers a number of interesting possibilities. Because there is less variability in access to care in the UK than the U.S., it might make a better environment in which to evaluate how much benefit our system can have for patients with serious health conditions.  The UK also has a strong medical science community and some of the brightest minds with whom to collaborate on research studies (see, for instance, our work with Oxford University).  Finally, the UK is an interesting place for us to operate because the system is more aligned to prioritize patient care over profitability; that’s not to say it’s flawless or that cost is not a factor in rationing access to some services. But if the current round of proposed reforms are implemented, it seems that physicians and care providers are going to be evaluated and rewarded on the basis of the outcomes they produce for patients, not just the number of procedures they perform. That sounds just like the world we’d like everyone to live in.

PatientsLikeMe member pwicks


Who’s #2 in Healthcare Innovation?
You guessed it – PatientsLikeMe

Posted February 18th, 2010 by

It’s been an exciting few months for PatientsLikeMe.  Here’s a quick recap…

Today, Fast Company released its mic_logoannual  ranking of the 50 Most Innovative Companies in the World.  PatientsLikeMe made #23 on the list alongside big league companies like Facebook, Disney, Novartis and Amazon.  PatientsLikeMe was also named the second most innovative company in healthcare, behind powerhouse General Electric (GE).  Read our news release about it here and the magazine article featuring one of our MS patients. To commemorate this honor, we’ve interviewed our President and Co-founder, Ben Heywood, in our first-ever PatientsLikeMe podcast (hosted by our own Aaron Fleishman).  Listen in!

Speaking of innovation, what do Bill Gates, Al Gore, Steven Hawking, Goldie Hawn, David Blaine and PatientsLikeMe Co-founder Jamie Heywood have in common? All of these innovators have graced the stage at a TED event. A nonprofit that brings together innovative people from “Technology, Entertainment and Design,” TED’s mission is to simply spread ideas.  Isn’t that another way of saying “share?”  We do love that concept.  Here’s Jamie at TEDMED (the healthcare-focused TED event) sharing our vision on the future of medicine in his presentation, “The Big Idea My Brother Inspired.”

Finally, we’d like to give a shout out to some of people who have interviewed us since the start of 2010.  In the February 8th issue of TIME magazine (“Group Therapy”), reporter Bonnie Rochman caught up with Jamie to get his perspective on the power of online patient communities. Later that same week, Ben Heywood sat down with Staci and Steve from WAAM’s My Great Kid Radio show to discuss sharing, openness and the remarkable power of technology.   He also spoke with Ryan McBride from Xconomy about the growth of PatientsLikeMe as a business, so be sure to check it out.  Lastly, we just posted a blog interview with reporter and author Thomas Goetz regarding his newly released book, “The Decision Tree” (featuring PatientsLikeMe and our community members).

Stay tuned for more 2010 interviews, announcements, and podcasts right here on our blog.

PatientsLikeMe member lscanlon


Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power

Posted April 30th, 2015 by

Just about a year ago, PatientsLikeMe’s Paul Wicks, PhD, Vice President of Innovation, wrote a blog post about what happens when trial participants realize they hold the power in clinical trials. He began his early experiences with ALS patients and clinical trials, but then fast-forwarded to how PatientsLikeMe members have replicated a clinical trial, started sharing their data with leading researchers to debunk alternative “cures” for their disease and even started taking trials into their own hands. Read what else Paul had to say here.

And if you’re interested in learning more, click below to watch Paul talk about patients leading the direction of clinical research in an interview with BioMed Central:

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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


Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership

Posted April 13th, 2015 by

AstraZeneca and PatientsLikeMe announced today that they’re working together to use patient-reported data to shape future medicines and help improve patient outcomes. While it focuses on an initial set of four therapeutic areas (lupus, respiratory diseases, oncology and diabetes) the partnership signals a significant step forward for patients worldwide. Bruce Cooper, AstraZeneca’s Senior Vice President, Global Medical Affairs and Ed Godber, PatientsLikeMe’s Executive Vice President of Life Sciences Ventures explain why.

What is this partnership designed to do?

Bruce Cooper: We’re focused more than ever on having patient-defined value drive our scientific developments. To do so, we need to understand more about what patients are experiencing day-to-day. Our partnership with PatientsLikeMe allows us to tap into a patient network with more than 325,000 members. Every minute of every day, they are using the website to track their condition and give others like them information and support. They’re also contributing data for research. Now, their shared experiences will become real world evidence that accelerates AstraZeneca’s R&D capability and delivers patient-centric medicines.

Ed Godber: Ultimately, we want to help AstraZeneca partner with patients so that patients shape the medicines of the future, those medicines lead to better outcomes, and patients can live the lives they want. It’s exciting to see how Briggs Morrison (Executive Vice President, Global Medicines Development, AstraZeneca) and his team have truly committed themselves to transforming the discovery and development process by focusing on what patients experience, and need.

How does this collaboration actually help patients?

Bruce Cooper: We have significant potential to accelerate an upgrade to the system by making the patient voice part of the DNA of life science processes, helping to generate evidence to support our R&D and drive our science. We want to better understand what is important to patients about all aspects of their condition and treatment, and then shape the profile of the medicines we discover and develop. And we want to empower patients to thrive to the fullest degree from this upgrade in how data is generated and shared.

Ed Godber: We’re really aligned on that point. PatientsLikeMe was founded more than ten years ago with a mission to put patients first, and to make their voice central to medical advances. We did that by enabling patients to learn from the experience of thousands of others like them, sharing important and varied information about their health in a way that is compatible with healthcare and research. We’ve already seen that this kind of sharing can improve patient outcomes and transform healthcare. So it’s important that we take “patientomics” to the next level. With AstraZeneca, we not only expand the network and data, but also develop the science and processes by which healthcare and discovery can be increasingly responsive to patient needs.

What’s the first thing you’ll focus on as you begin to work together?

Ed Godber: We have been able to quickly get into a rhythm of sharing innovation and best practice around how to integrate the patient voice into AstraZeneca’s R&D. From here, in the short term, we’ll work together to create a “how to” guide to incorporate patient centricity into the design and execution of our studies. The agreement is for five years, so we’ll continue to define and evolve what we focus on.

Bruce Cooper: I’m pleased to say too that we have begun to collaborate with clinical operations to integrate patient insights into trial design and execution. We also expect our medical strategies to be enhanced across our Therapy Areas. There are a number of areas that can benefit from the data that PatientsLikeMe generates, and I’m looking forward to exploring even more.

What does the future look like with this partnership in place?

Bruce Cooper: I see a world where patients are even more engaged in research, because they have greater access to it, and can shape the way we conduct research with them. I also see patients helping to shape the healthcare environment as a whole by bringing what’s important to them onto the government’s healthcare agenda, and even shaping the way healthcare is delivered in clinical practice in disease communities.

Ed Godber: We believe this can have a significant impact on the speed at which patients get the full value out of new and effective medicines in the real world, using all of the useful data about a patient’s experience at the right times in disease research, drug development, regulation, access and care.

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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.


Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni

Posted January 6th, 2015 by

Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA).

 

The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then, make the de-identified data sets available to the broader research community on Sage Bionetworks’ cloud-based computational research platform (http://www.synapse.org) to develop new tools to track PD disease progression.

We were overwhelmed by the response from the PatientsLikeMe PD community. More than 650 members provided 851 voice samples, and 779 of those were matched to the PDRS symptom data entered.

 

What’s next for open science?

Sage Bionetworks is working with the distributed DREAM community and ALS non-profit Prize4Life on another open science challenge alongside called the ALS Stratification DREAM Challenge. How does it all fit together?

The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open – the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based.

The ALS Stratification Challenge, opening in Spring 2015, will be a worldwide cloud-based competition designed to spur the development of quantitative solutions that can identify which ALS patients’ disease will progress rapidly and which will progress more slowly. Prize4Life provides the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM have created a synergistic competition concept and cloud-based computing platform that includes forums, webinars and a “leaderboard” that shows whose model is working best.

The individual or team with the best solution wins the prize – a $37,000 donation that the Challenge is asking everyone to help raise through the INDIEGOGO “Fund The Prize” campaign. The prize will help incentivize innovators from around the world to take part, and 100% of every donation goes towards the prize.

Helping spread the word

Prize4Life CEO Shay Rishoni is a 48 year-old dad of two boys and was an Ironman triathlete before being diagnosed with ALS in August 2011. Within three months he saw his ability to use his arms weaken considerably while no other body parts were affected. Less than two years later he was completely paralyzed and breathing with a ventilator. We caught up with him to help spread the word and learn more about the Challenge, why he thinks the prize is so important and why he works so hard.

Can you tell us a little about your own journey with ALS?

I was diagnosed with ALS 3.5 years ago, when I was 45 years old, a CEO of a company, an Ironman, a pilot, a military colonel (in res.) and a family man with two young sons. Given all of that, receiving a diagnosis of ALS was of course not what I had planned! But I knew that like everything else in life, I will make sure to stay true to myself and my values nonetheless- to stay positive, active and entrepreneurial. That meant in my public life to fight for the development of treatments- and a cure!- for ALS, for current patients like me, but mostly for future patients. In my private life, as a husband, as a friend and as a father to fight to feel and know that Life is Good, and winning is a way of life. Although by now I am fully paralyzed, I believe that as long as I dream up plans and then work to make them happen, I am invincible.

You can see more of me explaining it in this video of my TED talk.

How did you become involved with Prize4Life and the ALS Stratification Dream Challenge?

I first learned about Prize4Life from its founder, Avi Kremer, who is also an ALS patient. Avi was diagnosed with ALS 10 years ago, as a 29 years old Harvard Business school student striving to make finding a cure for ALS a viable business. He was the recipient of the 2011 Israeli Prime minister award for innovation and entrepreneurship in the non-profit sector. I was inspired by his strength, courage and sophistication, and with Prize4Life model and important work and I knew that this is a framework with which I will do important meaningful things for ALS research, and I become the CEO in 2013.

One such important thing is the ALS Stratification Dream challenge. I think it’s a unique and highly innovative initiative. From a patient perspective it addresses a critical question- How can patients with a rare disease create meaningful solutions for their own illness? And the answer is by engaging as many stakeholders as possible. The “Fund the Prize” campaign is the first of its kind effort to make the path for accelerating drug development completely open- the patient data is open access, the research is open, global and collaborative, and the funding is crowd-based. It builds on Prize4Life’s database of ALS patients- the largest ALS clinical trials database in the world. Sage Bionetworks and DREAM, our collaborators, have created a synergistic competition concept and cloud-based computing platform to allow a planetary republic to use the data. Together we will get computational solutions that will tell us why patients are so diverse- from Lou Gehrig’s succumbing to the disease within two years to Stephen Hawking’s 50 years odyssey with ALS. The Challenge, opening in Spring, 2015, will be a worldwide cloud-based competition designed to spur the development of computer algorithms that effectively predict which ALS patients will experience rapid disease progression and which patients will live longer.

Why do you think the prize model is so important?

Prize4Life’s prize model is inspired by similar programs such as X-prize for space travel, demonstrated to foster meaningful research. These programs allow bringing awareness and new minds into a field and generate measurable results for well-defined goals. Prize4Life wants to bring all these benefits to ALS- awareness, new minds and measurable, highly needed, results.

Prize4Life aspires to span broad fields of innovation for their importance for ALS: we gave a $1M prize for a medical device that serves as a biomarker for ALS, another prize for developing algorithms that can predict disease progression and we are running a prize for a druggable cure. We believe that biologists, chemists, engineers, clinicians, software developers and all citizen scientists can bring a meaningful change in ALS.

Prize4Life and DREAM have already demonstrated the power of open Challenges to advance ALS disease research. The first ALS Challenge, conducted in 2012 when Prize4Life’s open ALS patient database contained data from about 1,000 patients, leveraged insights from over 1,000 solvers from 63 countries to identify novel methods that have the potential to reduce the costs of ALS drug development by millions of dollars. The winning approaches are now being used in the development of several ALS treatments, and are described in a recent article in Nature Biotechnology (here is coverage by Science news).

Why do you work so hard?

Because I have a lot to accomplish. (“If not me than who? If not now than when?”) ALS is still an orphan disease, still is relatively unknown, and we still see tremendous potential to realize- computer scientists can create solutions for better treatments and care, engineers can create better assistive technology, biologists can create better drugs… I believe everyone can be part of the victory over ALS.

What’s one thing about ALS that you think everyone should know?

That we, the ALS patients, even when we can no longer speak, still have a voice. That we still have big dreams and still work to make them happen, and if enough people will work together, we will win the fight over ALS.

…and that ALS patients can love and be loved.

How do you see open science evolving in the future?

I think open science will only become more important in fostering innovative research ideas from diverse communities. It will allow everyone to be part of the solutions, and that means many more solutions!

Where can someone make a donation to help fund the prize?

“Fund the Prize- Solving ALS Together” is a crowdfunding campaign (running now on Indiegogo.com) and intended to provide the prize money for the Challenge and thereby to bring together renowned scientists worldwide and drive innovation. The crowdfunding will run until January 22, 2015.

Share this post on Twitter and help spread the word for Fund the Prize and ALS.


2014 recap – part II

Posted December 30th, 2014 by

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do.

At PatientsLikeMe
Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014:

  • We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients.
  • Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE
  • The community celebrated the sixth anniversary of PatientsLikeMeInMotion™.
  • We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015.
  • Data for Good launched in March topromote the value of sharing health information to advance research and underscore the power of donating health data to improve one’s own condition.
  • We followed that up with 24 Days of Giving in November, a month-long campaign to encourage patients to rethink how they donate health data. Garth Callaghan, a PatientsLikeMe member, kidney cancer fighter and author of Napkin Notes, shared his inspiration along the way.

Partnerships
We’re partnering up with even more people who believe in patient-centered healthcare. Here are some of the new friends we met in 2014 and are excited to be working with:

  • One Mind to help the millions of people worldwide who are experiencing post-traumatic stress (PTS) or traumatic brain injury (TBI), or both.
  • Actelion to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL.
  • Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) to help ease patients’ transitions from cancer treatment to survivorship.
  • LUNGevity Foundation, to help people diagnosed with lung cancer. LUNGevity will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.
  • USF Health to improve health outcomes for multiple myeloma patients. The partnership is PatientsLikeMe’s first with an academic health center.
  • Schwartz Center for Compassionate Healthcare to better understand patients’ perceptions of compassionate care and strengthen the relationship between patients and their healthcare providers.
  • Sage Bionetworks on a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.
  • Genentech (a member of the Roche Group) to explore use of PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools to help researchers develop innovative ways of researching patients’ real-world experience with disease and treatment.

Out of the office
We’re always looking for ways to get out into the community and get involved out of the office, whether speaking to the FDA or simply helping out at a volunteer event. Here’s some of where we were in in 2014:

In the news
And here are some of the highlights from PatientsLikeMe in the media in 2014:

For more PatientsLikeMe media coverage, visit our Newsroom.

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PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)

Posted August 5th, 2014 by

Patients To Share Their Experiences, Help Researchers Better Characterize Disease
And Develop Treatment Strategies 

CAMBRIDGE, Mass.—August 5, 2014—PatientsLikeMe and Actelion Ltd. (SIX: ATLN) are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an online hub for developing and sharing new health measures that better reflect patients’ experiences living with and managing disease.

Actelion is the first pharmaceutical company to use ORE to create a measure for a rare condition and, once completed, to share it with other researchers. Actelion’s Senior Director – Medical Head of VALCHLOR and ZAVESCA Mitchell Nagao said he believes this open approach to research will enhance the existing evidence about MF-CTCL. “As changes in technology, culture, and treatment affect how patients live with disease, we want measurement to evolve accordingly. Our work with PatientsLikeMe will help ensure we’re applying the best principles for patient-centered research and giving tools back to the community so they can evolve them even more.”

PatientsLikeMe Vice President of Innovation Paul Wicks said the project further reinforces that ORE is a proven platform for developing new patient-based measures. “We created ORE to help patients and researchers work together to transform care and discovery that truly serve the patient. Now we’re past the initial pilot stage, and it’s exciting to see members of industry engaging with patients to develop more tools that really measure what matters to patients.”

Actelion will work with PatientsLikeMe to engage people who have MF-CTCL for support and research and to develop and test the tool. PatientsLikeMe welcomes anyone with MF-CTCL who is interested in contributing to join in at www.patientslikeme.com.

Cutaneous (skin) T-cell lymphomas (CTCL) are non-Hodgkin’s lymphomas that primarily involve the skin but can also involve the lymph nodes, blood and other organs. Mycosis fungoides (MF-CTCL) is the most common type of CTCL.

About Actelion Ltd.
Actelion Ltd. is a leading biopharmaceutical company focused on the discovery, development and commercialization of innovative drugs for diseases with significant unmet medical needs. Actelion is a leader in the field of pulmonary arterial hypertension (PAH). Our portfolio of PAH treatments covers the spectrum of disease, from WHO Functional Class (FC) II through to FC IV, with oral, inhaled and intravenous medications. Although not available in all countries, Actelion has treatments approved by health authorities for a number of specialist diseases including Type 1 Gaucher disease, Niemann-Pick type C disease, Digital Ulcers in patients suffering from systemic sclerosis, and mycosis fungoides type cutaneous T-cell lymphoma. Founded in late 1997, with now over 2,400 dedicated professionals covering all key markets around the world including Europe, the US, Japan, China, Russia and Mexico, Actelion has its corporate headquarters in Allschwil/Basel, Switzerland. Actelion shares are traded on the SIX Swiss Exchange (ticker symbol: ATLN) as part of the Swiss blue-chip index SMI (Swiss Market Index SMI®). All trademarks are legally protected.

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 250,000 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.

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Contacts
Samantha Cummis
Actelion USA
+1 650.808.6615
samantha.cummis@actelion.com

Margot Carlson Delogne
PatientsLikeMe
+1 781.492.1039
mcdelogne@patientslikeme.com


PatientsLikeMe invites patients to lead research projects on Open Research Exchange

Posted March 29th, 2014 by

New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes

CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome measurements using the company’s Open Research Exchange™ (ORE) platform. This call for participation is a way for people living with disease to become the researcher, and to use their own and others’ experiences to create new health measures that are more meaningful, helpful, and relevant.

ORE was launched in 2013 as an online hub for the development of patient-reported outcomes (PROs)—measures used by clinicians to gauge health, disease severity, and quality of life. Since then, thousands of PatientsLikeMe members have given researchers feedback on measures relating to hypertension, treatment burden, diabetes and appetite, and primary palliative care. There were six pilot studies fielded on ORE last year and, while response goals varied from study to study, on average researchers using ORE collected 100 percent of their required responses in less than a week’s time. PatientsLikeMe’s Vice President of Innovation Paul Wicks said that’s far faster than the average 6-12 months it can take to gather similar data via in-person meetings or telephone and web-based questionnaires.

“We’re only beginning to see how ORE can simplify and speed up the research process, and how our members’ experience with more than 2,000 conditions can help researchers more clearly hear the patient voice,” Wicks said. “Now, we’ll be able to work alongside patients as they shape the next generation of research tools and lead future advancements in the research process.”

The Robert Wood Johnson Foundation (RWJF), whose 2013 grant of $1.9 million funded the platform’s start, will accelerate ORE’s innovative approach to developing measures with an additional $2.4 million grant.

“We are eager to invest in innovation that explores how to put patients more firmly in the driver’s seat of their care and of discovery in medicine,” said RWJF Senior Program Officer Paul Tarini. “We’re excited to see the potential impact that patients can have in clinical care and research with ORE’s new phase.”

Patients who want to ensure research goes in a direction that addresses their needs and concerns and who have an idea for a new measure are invited to apply at https://www.openresearchexchange.com/patients.

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 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook. 

About the Robert Wood Johnson Foundation

For more than 40 years the Robert Wood Johnson Foundation has worked to improve the health and health care of all Americans. We are striving to build a national culture of health that will enable all Americans to live longer, healthier lives now and for generations to come. For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.


PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease

Posted February 5th, 2014 by

Companies Partner With TED Fellow Dr. Max Little to Map the Severity of the Disease

CAMBRIDGE, Mass.— February 5, 2014PatientsLikeMe and the nonprofit research organization Sage Bionetworks announced today the launch of a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.

In collaboration with TED Fellow Dr. Max Little, the Patient Voice Analysis (PVA) project will for the first time combine­­­ data from two sources: phone-based voice recordings that Dr. Little’s software collects and analyzes to detect markers of PD; and information reported by patients using PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS), a tool that documents patients’ answers to questions that measure treatment effectiveness and disease progression.

Both sets of data will be analyzed by the PVA team composed of Dr. Little and scientists from PatientsLikeMe and Sage Bionetworks. In later phases of the project, the de-identified data sets will be available to the broader research community on Sage Bionetworks’ cloud-based computational research platform (www.synapse.org). By crowdsourcing the analysis, the PVA team hopes to identify relationships between voice markers (like tremors in speech) and clinical signs of Parkinson’s disease (such as tremors in the body) so that it becomes possible to monitor patients’ progression with a short phone call. Current monitoring efforts for PD typically require patients to undergo multiple lab visits that cost both time and money.

“We want to democratize the process of monitoring disease progression and return the results to patients as quickly as possible, so they are empowered to make the best decisions,” said PatientsLikeMe Vice President of Innovation Paul Wicks, Ph.D.. “We invite anyone who has PD to take part and join PatientsLikeMe, so they can stay informed about their condition and generate new insights about this disease,” said Wicks.

Dr. Stephen Friend, President and Founder of Sage Bionetworks, echoed Wicks’s enthusiasm for the collaboration. “We are so excited by this opportunity to work together with Dr. Little and PatientsLikeMe. If successful, I fully expect that Dr. Little’s voice software will be what PD patients and their families the world over use to monitor themselves in real-time, and thereby gain insights on how to better manage their own health.”

For more information on the Patient Voice Analysis Project visit: www.patientslikeme.com/join/pva

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 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Sage Bionetworks 

Sage Bionetworks (http://sagebase.org/) is a nonprofit biomedical research organization, founded in 2009, with a vision to promote innovations in personalized medicine by enabling a community-based approach to scientific inquiries and discoveries. In pursuit of this Mission, Sage Bionetworks is working with others to assemble an information Commons for biomedicine:

  1. That is supported by an open compute space (Synapse: www.synapse.org)
  2. That supports open research collaborations and innovative DREAM Challenges.
  3. That empowers citizens and patients with the tools they need to partner with researchers and share their data through Sage’s BRIDGE platform (http://sagebase.org/bridge/) to drive the research studies that matter most to them.

Sage Bionetworks is located on the campus of the Fred Hutchinson Cancer Research Center in Seattle, Washington, and is supported through a portfolio of philanthropic donations, competitive research grants, and commercial partnerships.

CONTACTS

Lori Scanlon
PatientsLikeMe
Office: +1 617.229.6643
Mobile: +1 774.217.1330
lscanlon@patientslikeme.com

Thea Norman
Sage Bionetworks
Office: +1 206.667.3092
Mobile:  +1 858.997.8598
thea.norman@sagebase.org


Social media users say ‘yes’ to sharing health data

Posted January 23rd, 2014 by

There are some new survey results that just came out from the Institute of Medicine’s Evidence Communication Innovation Collaborative (ECIC) that show social media users give the stamp of approval to sharing health data. (A big, public shout out to the more than 2,000 PatientsLikeMe members who participated in the survey.) It’s very exciting to see the voices of so many in the community having such an impact.

Check out the results below and read more about it in the PatientsLikeMe newsroom.

 


Can patients become innovators? Rishi Bhalerao from PatientsLikeMe speaks at TEDx Springfield 2013

Posted December 11th, 2013 by

Rishi Bhalerao, our Program Director of Client Services, recently spoke about patient innovation at the 2013 TEDx conference in Springfield, MA. Rishi talked about how the path to innovation begins right with patients because they are the ones who live with a condition day-in and day-out. Their sharing helps bridge the gap from patient to doctor to provider, and through measuring their own progress, patients can learn from each other and improve their lives together.