Research

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

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: Share this post on Twitter and help spread the word.

PatientsLikeMe and AstraZeneca announce global research collaboration

           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 …

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Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire. In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth Wood from the University of Cambridge to understand a symptom called an extracampine hallucination, which is the sense of a presence beside or behind you even when there’s nothing or nobody there. So, unlike visual hallucinations, the presence can only be sensed or felt, not seen. Everything the community shared will help researchers develop a new tool to better measure this type of hallucination and alert doctors and care teams to ask about this symptom earlier rather than later. Read the results here. What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to …

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PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange

Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by the response from the community, and we’re excited to share that one of those projects is very close to being completed. Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain. Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project. Share this post on Twitter and help spread the word for MS and chronic pain.

2014 recap – part II

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 …

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2014 recap – a year of sharing in the PatientsLikeMe community

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys in short videos and even posted about their favorite food recipes. A heartfelt thanks to everyone who shared their experiences this year – the PatientsLikeMe community is continuing to change healthcare for good, and together, we can help each other live better as we move into 2015. Team of Advisors In September, we announced the first-ever PatientsLikeMe Team of Advisors, a group of 14 members that will work with us this year on research-related initiatives. They’ve been giving regular feedback about how PatientsLikeMe research can be even more helpful, including creating a “guide” that highlights new standards for researchers to better engage with patients. We introduced everyone to three so far, and look forward to highlighting the rest of team in 2015. Meet Becky – Becky is a former family nurse practitioner, and she’s a medically retired flight nurse who is living with epilepsy and …

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PatientsLikeMe Develops Patient and Scientific Advisory Boards

Company Forms First Member-Based Team of Advisors, Names New Participants to ORE Scientific Advisory Board CAMBRIDGE, Mass.—September 17, 2014—PatientsLikeMe has formed its 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. The company also named three new members to the Scientific Advisory Board for Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues. ORE was created with support from the Robert Wood Johnson Foundation. A long-time advocate for the patient voice in medical research, PatientsLikeMe posted an open call for the patient-led Team of Advisors in its member forums and was overwhelmed with applications. “Our members are at the heart of our pioneering approach to research, and they’re very focused on sharing their experience to improve medicine,” said Executive Vice President of Marketing and Patient Advocacy Michael Evers. “Now their voice will extend even further as we continue to revolutionize the way that healthcare is developed and delivered.” Team members are representative of the PatientsLikeMe community at large and include veterans, nurses, social workers, academics, and advocates. They range in age …

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Results! PatientsLikeMe diabetes members share about challenges and concerns

Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the difficulties of communicating with their doctors.   This is real-world, patient reported health data doing good; helping others living with diabetes learn more from people just like them and showing researchers where to focus their efforts in the future. Click here to view the results. Share this post on twitter and help spread the word for diabetes.    

Research, support and hope for spinal muscular atrophy

If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological disorders are sharing their stories and donating health data to help improve the lives of others and contribute to medical research. And in the spirit of Stephen and everyone living with these conditions, we’re recognizing Spinal Muscular Atrophy Awareness Month this August. Spinal muscular atrophy (SMA) affects the nerves responsible for movement, including breathing and other bodily functions. It is inherited through genes passed on by parents who are carriers of the genetic code. SMA affects people of all ages, genders and backgrounds. There are four types of SMA – Types 1, 2 and 3 all affect children and adolescents, while type 4 is usually limited to those above the age of 35. And although SMA is classified as a rare condition, think about this: SMA affects approximately 1 in every 6,000 babies, and about 1 in 50 people are carriers for the condition.1 So …

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Patients as Partners: Managing High Blood Pressure questionnaire results

In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about preventing life-altering conditions that result from high blood pressure, such as stroke, heart attacks, heart failure and chronic kidney disease. Over 500 PatientsLikeMe members who are living with hypertension worked with our research partner Tamara Kear, Ph.D. R.N., CNS, CNN from Villanova University on our Open Research Exchange (ORE) platform to help make the instrument the best it can be. From one person we heard — “I have been diagnosed with white coat syndrome. I wore a monitor for 24 hours and it was regular.” What’s that? Read on in the results. What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s …

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