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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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“I am slowly building my self-esteem “ – PatientsLikeMe member SuperChick shares about her journey with PTSD

PatientsLikeMe member SuperChick is a veteran living with post traumatic stress disorder (PTSD), and her story is one of learning to cope with emotions and frustrations. She’s living proof that things can get better – she’s a loving mother of two, has a great husband and is managing several other mental health conditions. Below, she shared about the sexual abuse she experienced while serving in the military and explained how her previous husband physically assaulted her. Superchick also describes the symptoms of her PTSD and how the community on PatientsLikeMe has been “a huge help” to her. Read about her journey below. Note: SuperChick shares about her story of abuse, which may be triggering. Can you speak a little about your PTSD and what led to your diagnosis in 1986? I was originally diagnosed with PTSD after being raped while I was in the military. I believe I was more susceptible because I had been molested as a child and didn’t have good family support or dynamics. I worked through it, but was diagnosed again in 2007 after leaving a severely abusive marriage, where I was raped multiple times and choked at least twice. I was emotionally abused and didn’t …

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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.

What do you know about cervical cancer?

January is Cervical Health Awareness Month, but it’s not just a month to learn more about cervical cancer, it’s about learning how to prevent it. Since the 1950s, there’s been in increased effort to raise awareness for prevention screening, and from 1955 to 1992, the cervical cancer incidence and death rates declined by 60 percent.1 But there’s still work to be done, as the NIH estimates that over 12,000 women will still be diagnosed with cervical cancer in 2015.1 Our own Priya Raja spoke about cervical cancer awareness on the blog about a year ago, and she stressed the importance of Pap smears and making them available to all women around the world. During January, the awareness focus will be on preventative screening as well as cervical cancer itself, because as Priya said, “being screened just once can reduce the likelihood of having cancer.” You can learn more by checking out the National Cervical Cancer Coalition’s website and the Center for Disease Control and Prevention’s infographic on cervical cancer (featured to the right). And if you’ve been recently diagnosed with either HPV or cervical cancer, reach out to others like you in the PatientsLikeMe community. Share this post on Twitter and …

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“…about 10,000 baby boomers are turning 65 every day…” – An interview with Dr. Sarika Aggarwal

Sarika Aggarwal, M.D. is Executive Vice President and Chief Medical Officer at Fallon Health, and it’s her job to make sure all plan members get appropriate, effective and high-quality care. We caught up with Dr. Aggarwal for an interview, and she talks about how she came to spend the last 26 years practicing medicine in Massachusetts, what the new partnership between Fallon Health and PatientsLikeMe means for members, and a bit about her work—especially her focus on helping seniors stay and get care in their own homes whenever possible. A bit of background: Dr. Aggarwal graduated from Grant Medical College at Bombay University and then completed her residency at UMass Memorial in Worcester, Massachusetts. Before joining Fallon Health in 2012 as Vice President of NaviCare Clinical Programs, Dr. Aggarwal was Medical Director in the Office of Clinical Integration at UMass Memorial Medical Care and an Assistant Professor of Medicine at UMass Medical School. Dr. Aggarwal, we know a little bit about your background in India. What made you decide to come to the United States? My husband had been studying in the U.S. for about six years and went back to India to visit his parents. [That’s when we met, …

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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 and USF Health collaborate to empower cancer patients

Partnership Marks the First Between the Patient Network and an Academic Health Center CAMBRIDGE, Mass.—December 4, 2014—PatientsLikeMe and the USF Health Internal Medicine Department have partnered to improve health outcomes for multiple myeloma patients. People living with multiple myeloma and other cancers will be directed to PatientsLikeMe to access patient-reported symptom and treatment information and connect with others to guide their treatment discussions and decisions. The partnership is PatientsLikeMe’s first with an academic health center. The companies will exchange and publish information on multiple myeloma on their websites and work collaboratively with PatientsLikeMe members to continuously enhance the health and education of people living with the condition. The organizations also expect to collaborate on specific research initiatives in the future. USF Health, an integral part of the University of South Florida (USF), is a partnership between USF’s health-related colleges and schools and the USF Physician’s Group. “It is an honor as a cancer physician and scientist to become part of a larger community of patients with multiple myeloma,” said Damian Laber MD, Hematology/Oncology division chief at USF and senior member at Moffitt Cancer Center. “This partnership enables patients and their families worldwide to receive the most relevant and current medical …

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“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about his experiences in a recent interview, everything from his handicap-accessible house to how physical therapy helps him stay mobile. Read his story below. What went through your mind when you were diagnosed with RRMS back in 1994? I didn’t really know too much about MS at the time. I’m not sure if I had even heard of it, so didn’t know what to think. The diagnosing neurologist said, “you have a mild case of MS.” I was young and carefree at the time and didn’t really worry about it too much. I kind of just went on with life. It looks like you’ve done a lot of work on your house to make it handicap accessible. What are some tips and tricks you can share with the community? I would say that everyone’s needs are different. It’s a good idea to have an occupational therapist that …

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Depression Awareness Month- What does it feel like?

Here at PatientsLikeMe, there are thousands of people sharing their experiences with more than a dozen mental health conditions, including 15,000 patients who report major depressive disorder and 1,700 patients who report postpartum depression. What do they have to say? This word cloud has some of the most commonly used phrases on our mental health forum. It gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health. But the best way to increase awareness and knowledge, we believe, is to learn from real patients. To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?” “My last depressive state felt like I was in a well with no way to get out. I would be near the top, but oops….down I go. I truly felt that I would not be able to pull myself out of this one. I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.” “It feels like living in a glass box. You can see the rest of the world going about life, laughing, bustling …

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Jamie delivers keynote presentation at DIA 2014

Our co-founder, Jamie Heywood, recently traveled to San Diego to receive the Drug Information Association’s (DIA) 2014 President’s Award for Outstanding Achievement in World Health. With the award in his hand and speaking to everyone who was attending the event, he accepted it on behalf of the quarter million PatientsLikeMe members (this is for all of you!). During the DIA’s 50th annual meeting, Jamie gave the keynote address, and he touched upon his personal journey in the world of healthcare and patient-reported data. He spoke about his brother, Stephen Heywood, who passed away from ALS in 2006, and how Stephen inspired the creation of the ALS Therapy Development Institute (ALSTDI) and PatientsLikeMe. Jamie also shared about “healthspan” and the potential that personal health data has to change the way we look at treatments and research. But that’s not all – watch the video below to hear everything Jamie said. Share this post on Twitter and help spread the word.

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