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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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Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog. 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 create the most effective tools for measuring disease.

A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood

Earlier this week, PatientsLikeMe announced a five-year collaboration with Genentech. Our goal? To bring your experience – the patient experience – to a company that wants to learn more from the people who are living with serious diseases, and to better integrate your insights into their decision-making as they develop new medicines. PatientsLikeMe Co-founder and President Ben Heywood talks more about the work ahead. So, why Genentech? What do you hope to achieve through this partnership? Genentech is a leading biotech company and an acknowledged leader in oncology (which is where our initial focus will be). We spoke with their teams for quite some time before embarking on this collaboration and I have to say that we just really like their approach. We’re very much aligned in our goals of defining a more patient-centric approach to research, development, and care delivery. Their goal in working with us is to explore the use of our PatientsLikeMe network to develop innovative ways of researching peoples’ real-world experience with disease and treatment. I think we also hope and expect this collaboration will encourage broader engagement of others involved in the delivery of healthcare to support a stronger voice for patients like you. How …

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PatientsLikeMeInMotion 2014: Celebrating 6 years of PatientsLikeMe members giving back to their communities and raising awareness

It seems like it was just yesterday when PatientsLikeMeInMotion was launched, but it’s been going strong for more than 5 years now – wow, how time flies! We’re celebrating the 6th year of PatientsLikeMeInMotion with a recap of 2013, the biggest year so far! We had the honor of supporting 1,611 members across 27 states who participated in everything from a JingleBell race and the MS Muckfest to a golf tournament and a motorcycle ride. These people raised money for their favorite nonprofits and rallied everyone to promote awareness for their health conditions. If you’re unfamiliar with how it works, check out our guidelines – we sponsor 3-star members (super health data donors) who form teams and fundraise with their local nonprofits. And these advocates receive a donation, free team t-shirts and more! Here’s what a few members had to say: “I feel so fortunate every time my family and I can contribute, with [PatientsLikeMe’s] help, to the financing of research for the cure.“ “We love participating in the PatientsLikeMeInMotion program. It’s a wonderful opportunity for our cause to not only earn money, but we love having our volunteers sport the blue PatientsLikeMe shirts at our events! It’s a win-win for us!“ …

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Patients as Partners: The WHYSTOP Scale questionnaire results

We’re really excited to launch a new series here on the blog called Patients as Partners. The series will highlight the results and feedback that PatientsLikeMe members give on questionnaires from our Open Research Exchange (ORE) platform. 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 create the most effective tools for measuring disease. So to kick the series off, we have results from the WHYSTOP Scale, which measures how diabetes can impact appetite and how people decide when they’re done with a meal. Back in September, we launched this as one of the first-ever questionnaires on ORE with our research partner William Polonsky, Ph.D., CDE, from the Behavioral Diabetes Institute and University of California, San Diego. More than 700 type 2 diabetes community members added their voices, and all of the answers and feedback shaped and influenced the health measure to make it the best possible. …

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Stand up and be counted during National Multiple Sclerosis Education and Awareness Month

  Here at PatientsLikeMe, every experience counts, whether you’ve just been diagnosed, are trying a new treatment, or managing your symptoms. This month, we’re standing up and focusing on Multiple Sclerosis (MS), a neurological condition that affects 2,500,000 people around the globe—including more than 400,000 in the United States.1 To help raise awareness about MS, the Multiple Sclerosis Foundation (MSF) and its partners have named March “National MS Education and Awareness Month.” Together, we can stand up and help those living with MS be counted. There are many different awareness activities you can participate in over the next few weeks. You can also submit a photo to the MSF as part of their “MS Awareness: Make It Count” contest. You’ll need three things: A camera (still or video) Lots of people wearing the color orange (here’s a picture of the PatientsLikeMe team) A homemade sign that says “SUPPORT THE MULTIPLE SCLEROSIS FOUNDATION – BECAUSE MS COUNTS!” If you’ve been recently diagnosed with MS, check out our MS patient interviews and blog posts. And you could also join more than 33,000 people with MS at PatientsLikeMe – it’s one of the largest communities on the site, and there are always some great …

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Subjects no more: what happens when trial participants realize they hold the power in clinical trials?

When I first became involved with online communities back in 2002, I moderated a small forum for patients with ALS/MND in the UK at King’s College Hospital to connect with one another, share tips and support, and to help our care center to serve them better. One area that remains controversial even to this day is clinical trials. ALS is a rapidly fatal and incurable illness, and as a young researcher I was often trying to field questions that patients had about the trials process: “Why aren’t there more trials taking place?” “Why do we have to have a placebo?” “If researchers think commonly available treatments like dietary supplements or antibiotics might slow my disease, why can’t I just take them anyway rather than being enrolled in a trial?” Given the severity of their situation and the slow pace of clinical trials (it’s estimated that it takes over 10 years for a new discovery to go from the lab to the clinic), I certainly sympathized with their frustrations and did my best to get the answers they needed, asking my medical colleagues where I could and translating the technical jargon. A few patients decided to go a step further than …

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Living with hope – An interview on AKU with Alycia and Nate

We’ve had the pleasure of talking with and featuring many PatientsLikeMe members on the blog over the years, but Nate is the youngest by far. He’s just 5 years old and is living with Alkaptonuria (AKU), a rare metabolic disease, sometimes called Black Bone Disease. Recently, we had the chance to chat with his mom, Alycia, who spoke with us about Nate’s experiences with AKU and her role and philosophy as his caregiver. To get started, what would you like everyone to know about your son? My son is an extremely happy and energetic 5 year old. He has recently started school and loves playing sport. His favourite sports are cricket and Australian Rules Football. He has a younger brother who he loves getting into mischief with. He also has a rare Metabolic disease called Alkaptonuria. However, we have chosen not to tell him about his disease at this stage. Do you remember what the first sign or symptom was? And can you talk a little about the diagnosis process? The only symptoms he had were black urine and dark ear wax. We never really thought much about his dark urine because we only noticed it when he had accidents …

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Putting patients first: An interview with partners CoPatient and PatientsLikeMe

                What’s this partnership all about? Michael- Every day on PatientsLikeMe, our members are sharing their real-world experiences. They’re getting real support from people just like them, people who get what it’s like to have their condition and be on that journey. In the forums, they chat about everything from their diagnosis experiences to treatments they might be taking, but also share things to make each other smile, like funny pictures of cats doing crazy things. The forum is also where members chat about their frustrations. And there are topics that come up time and time again like how expensive, and confusing, it is to deal with insurance, billing and overall medical costs. So when CoPatient approached us about working together, we thought it’s worth exploring a potential partnership. They consider themselves “medical billing advocates” and have put together a team that want to make sure everyone is getting the best, most knowledgeable assistance possible. If there’s a way to take the stress out of this healthcare journey for our patient and caregiver members, we want to be able to highlight it. CoPatient seems to offer services that can do just that. On the other hand, CoPatient wants to …

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PatientsLikeMe in real life: reporting back from the PFF Summit

Dave, Rishi, and I spent a few days last month in sunny La Jolla, California – site of the biennial PFF Summit. Well, La Jolla is usually sunny… this year it was unseasonably cold and rainy! Nevertheless, not even the nasty weather could dampen the enthusiasm of more than 500 clinicians, researchers and (most importantly!) patients and caregivers who turned out from all over the world to meet up and share the latest research on pulmonary fibrosis. The PFF Summit was hosted by the Pulmonary Fibrosis Foundation (PFF), who we met a few months after announcing the launch of the PatientsLikeMe IPF Community. We were very enthusiastic to help support the PFF’s work by sponsoring and contributing to the research exhibition at the summit. While I spoke with patients, caregivers and clinicians about our open patient registry and the history of PatientsLikeMe, Dave and Rishi learned about the latest advances in PF research and shared our study of the impact of PF on patients’ sleep. If you haven’t heard about it yet, here’s what we learned about PF patients and sleep: A total of 66 IPF patients reported having or possibly having sleeping problems, and 47% of these had sleeping …

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