Organ Transplants

Know Thy Self – Measuring Your Quality of Life

Last Fall, PatientsLikeMe introduced our Quality of Life (QoL) tool which is displayed on the profiles of members in the HIV community.  By answering a few questions, patients can see how HIV is impacting them – physically, socially and mentally.  Today, this same QoL measure is used by thousands of patients across the HIV community and other communities, such as Epilepsy and Organ Transplants. PatientsLikeMe Research Scientist, Michael Massagli, recently spoke with us in a PatientsLikeMeOnCallTM podcast interview about the goal, outcomes and benefits to measuring your quality of life. Listen here: “[In the HIV community], we’ve taken a look at the relationship between QoL and CD4 level and find the average score of patients with CD4 below 200 is significantly lower for physical, mental and social well-being.  People with the most comprised immune systems have worse quality of life, across all 3 domains, than other patients… “ To date, several of our members have at least three QoL scores on their profile.  Mike says, “Multiple uses of the QoL instrument by the same person over time helps researchers determine how small a change in QoL scores is meaningful to patients or important enough to evaluate how a treatment is …

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Meet Our Transplant Community’s BionicMan

Since the launch of the PatientsLikeMe Transplants Community in March, more than 1400 patients have come together to share and learn from their transplant journeys. Thanks to our partnership with the National Kidney Foundation serving New England, BionicMan was one of the first transplant recipients to sign up and played a critical role in helping us shape the community before it was launched.  Recently, we interviewed BionicMan to learn more about his transplant journey, his experience with PatientsLikeMe, and his participation in the U.S. Transplant Games. — (PatientsLikeMe) You’ve been a member of PatientsLikeMe since we started testing the transplants community months ago. How did you find out about PatientsLikeMe? (BionicMan) I found out about PatientsLikeMe from National Kidney Foundation serving New England.  I think it has benefited me because I like to talk to people and give them the benefit of my experiences. (PatientsLikeMe) With both a heart and a kidney transplant, how has your life changed over the years? (BionicMan) As both a heart transplant (1992) and kidney transplant (2007), my life has changed in so many ways.  I try to live life to the fullest each day, and appreciate every moment I have with my family. Over …

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PatientsLikeMe Teams Up With The National Kidney Foundation Serving New England

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 …

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PatientsLikeMe – Out & About and OnCall

The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare.  You may have heard about our executives at industry conferences, government hearings, or even on TV.  Highlights below. Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how industry is engaging directly with patients and tuning into the “unvarnished truth” patients are sharing about their real-world disease experiences. Watch the latest business video at <a href=”” mce_href=””></a> Earlier in March, we launched our PatientsLikeMeOnCallTM podcast series to bring to you our leaders’ perspectives on topics that impact you, the patient, and the healthcare industry as a whole.  We kicked off the series with Ben’s interview regarding Fast Company recognition.  You can check out that one and the rest of our podcasts on iTunes or click on the links below to start listening to a specific interview.  As podcast host Aaron Fleishman says, “thanks for stopping by and listening and we’ll talk to you next time.” Listen | Ben Heywood (Co-founder, President) answers questions about the launch of our new organ transplants community and our collaboration with Novartis Listen | David S. Williams III …

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Capture and Share Your Transplant Journey

Following up on last week’s launch of the PatientsLikeMe Transplants Community, we present you with the next in our podcast series – PatientsLikeMe OnCallTM:  Transplant Community Walk-Through.  Podcast host, Aaron Fleishman, interviews Product Manager Maureen Oakes about new and upgraded functionality rolled out with the launch of this transplants community. Topics covered in this podcast include: Patient Profile: get a glimpse at how transplant recipients capture their experiences on their profile by providing a transplant history, taking a quality of life survey, and entering lab and test data New Timeline Feature: patients in the transplants community can record and share every step of their transplantation journey with this new timeline feature Upgrades to the Patients Tab: a change made across all the PatientsLikeMe communities, members will find searching for patients like you much clearer and easier to do with these new upgrades to the Patients tab Stay tuned for more from the PatientsLikeMe OnCallTM podcast series, and don’t forget to spread the word about the new transplant community.

It’s World Kidney Day! Share on…

It’s World Kidney Day 2010 – a global health awareness campaign focused on the importance of kidneys and prevention of kidney disease. According to, “Many people are currently not aware that their kidneys are damaged and they might find out too late. Dialysis and transplantation can be prevented if kidney diseases are detected early.”  Here are some more interesting facts from the site: Diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD). There are currently over 240 million people with diabetes worldwide. This figure is projected to rise to 380 million by 2025. The number of people with renal replacement therapy have increased from 426,000 in 1990 to 1.5 million in 2000 and is expected to rise to 2.5 million by 2010. Did you know also know there are more than 83,000 people in the United States currently on the kidney wait list?  As members of our new transplants community can tell you, it can be a long and trying journey to get a new organ.  (Watch this video to learn more about our transplants community which launched earlier this week.) Let’s raise awareness of the risk factors for kidney disease.  And thanks …

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PatientsLikeMe and Novartis Unite to Launch Community for Organ Transplant Recipients

Recognized by Fast Company as two of the 50 Most Innovative Companies in the World, PatientsLikeMe and Novartis have united to launch a new community for organ transplant recipients (including kidney, lung, heart and liver).  In the news release announcement, PatientsLikeMe President Ben Heywood and Novartis CEO Joe Jimenez discuss what impact this community could have for organ recipients.  Ben also discusses the community in more detail as part of our PatientsLikeMeOnCallTM podcast series.  Listen in to learn more about our new programs PatientsLikeMeMentorsTM and PatientsLikeMeInMotionTM.

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